KNEEtalk

The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: Brambledog on June 11, 2012, 06:54:13 PM

Title: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 11, 2012, 06:54:13 PM
Hi,

I've got CRPS/RSD in my left knee following an arthroscopy in August 2011 - it was diagnosed in November that year after crazy pain, colour changes, temperature weirdness.....you know the form ::) I'm taking Lyrica at the moment, but it only seems to hold it off for a few months before my dosage has to be upped or changed.

Surgeon has said he won't touch it until he has to, and  I'm looking at a TKR when I get to 'that point' where I can't do anything and the arthritis is rampant in all compartments. At the last check I'm grade 3/4 in the patella femoral, grade 1and 2 in medial. Hopefully got a good few years in it yet!

I've been lucky enough to 'meet' a KG with it in her foot, but I'd really like to hear from anyone with it in their knee!

Hope the knees are behaving out there!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 18, 2012, 03:49:51 PM
I slipped and fell on the sidewalk on my way into work in February due to ice. After a pretty clean MRI but ALOT of continuing pain and some purplish discoloration over my knee area, my doctor believes I may have CRPS. I have started some pretty aggressive physical therapy, including a TENS unit for home use. They are ordering a knee TENS, which I am not sure exactly what it is, but the PT says it is like a brace with the electrodes in it. I have to have a bone scan and have been referred to a pain clinic. We will see if worker's comp is going to agree to pay for any of this. Somehow I doubt it.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 18, 2012, 05:04:05 PM
Hi fluttersby,

I haven't tried any TENS therapy, I suppose the pain management docs vary with their approaches, but mine didn't think it a good idea. Sadly, CRPS seems to be one of those where nobody is really sure about how best to treat it, what actually definitely works, and what definitely doesn't. ::) Bit of a 'suck it and see' approach with each patient I suspect....

I'll be interested to hear if the bone scan shows anything, I haven't had one since diagnosis and I do worry about whether the CRPS has done any harm in there. The pain clinic is standard fare, mine have been ok if hard to contact, and I can't be sure that her ideas on treatment are 'right' for me or not!

It's a pain and no mistake. Apologies for the pun, lol.

Hope your workers compensation pays up, if they refuse then ask your GP and the PT (and anyone else you see medically!) to write strongly worded letters of support, it's amazing what they can do...

All the best, hope the knee isn't too bad at the moment and you can get about ok. Mine hasn't liked the bad weather recently and I've had a lot of pains in my toes - fairly freaky stuff! Nice colours and chills with the knee too, and I managed to bang it today on my desk. Ouch! Muppet. :-\

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 19, 2012, 07:37:10 PM
I don't know if the bone scan will show anything, but I've read that bone loss can start very quickly with CRPS. I know it is not a definitive diagnostic for it, only a tool. It is scheduled for Friday but I haven't heard anything either way from WC.

I am still hoping this is not CRPS. I do not have much pain from a light touch, but I do have deep muscle burning, like someone is wringing out my muscles and tearing them to shreds. My physical therapist keeps saying that my skin would probably be burning, but it doesn't much, although I am super tender. I have noticeable purplish discoloration on my knee, especially if the room is cool, and also white splotches. I know my doctor wants to catch it early if this is what I have. The TENS unit is for desensitization, which apparently if done within like the first 3 months of onset of CRPS can halt its progression or put it in remission. I know that it does help to some degree with the pain, and any relief is welcome.



Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 19, 2012, 09:01:30 PM
I'd have to say it does sound a bit like CRPS from your description, although it might not be, as you say!...there are so many different things, and you don't get them in a neat pattern, just randomly... I get the purple splotchy look, but my splotches with that tend to be orange! I do get the skin burning sometimes, but not the super-sensitivity much. My toes have started with it recently, and the sensitivity is much worse there. That deep muscly pain thing I recognise tho, horrible stuff.

I find it responds very noticeably to cold and hot. If I'm cold in a cold room, my knee is guaranteed to be purple and dead-looking :o Mind you, it doesn't like the sun either and I burn up very quickly!! You just can't win...

Interesting on the TENS thing with the pain, I know the theory of TENS after pregnancy, lol, be good if it can kill it off quickly. My pain doc was saying I could beat it and she wouldn't be seeing me again... I've got an appointment in two weeks time! ::) I'll be feeling like a bit of a disappointment... At least the TENS helps with the pain, that's the main thing.

Are you on any meds yet for it? I'm on Lyrica at the moment, which has worked pretty well at getting rid of the worst pain.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 19, 2012, 09:27:44 PM
I have tried Lyrica in the past for fibromyalgia. It did not agree with me. For the first few days I felt like superwoman and thought it would be wonderful. I started feeling like a layer of water was under all of my skin. It also made me so forgetful. I just couldn't deal with that. I am on a low dose of neurontin right now, but not for CRPS--for the fibro. I haven't had any bad reactions to it so far. I am also on Topamax for migraine prevention. Topamax is an anti-seizure med that is used for nerve pain. I have to stay at a low dose of that too because it makes me forget everything also.

I am on vicodin, but have been for a long time. It does help the pain, but not for long enough. I also take Zanaflex, which is a muscle relaxer.

Having fibromyalgia in the first place is what will more than likely gum up the works for me as far as worker's comp goes. I never had a bit of pain in my knee (either knee) before I fell. Now it feels like my life is controlled by it. It is very different from the fibro pain and consistent.

I don't think a pain doc should be telling you you can beat CRPS. From everything I have read and heard, yes, it can be possible to keep mobility, it never truly goes away and can turn back up at any time. As for the TENS, they are ordering me one that is like a knee brace with the electrodes in it. I think I would rather have the regular unit so I can move the electrodes around instead of having them in the same spot constantly. I will have to discuss that with the PT. 
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 19, 2012, 09:47:42 PM
Sorry you've got fibro, I know that is very unpleasant. Having CRPS too would be quite a whammy....I will keep fingers crossed that it isn't.

The forgetfulness does drive me mad. I am also clumsy, dog-tired in the morning and late afternoon ::) and am gaining weight horribly.... It does seem to supress the crips though, so I am scared to go off it. When I see the pain doc again early next month I am expecting her to mention changing the meds - had an awful time when I changed before. I had a hellish week reducing and coming off amitriptyline, and then starting Lyrica and building it up. Felt like crap, loads of pain and burning. Nasty little vision of the uncontrolled version!

Thanks for saying that about the pain doc. I felt that myself, but you hope they know best and are right. Which is great if it does go.... But leaves you feeling awful if it doesn't! Damn docs, the more of them I see, the less I hold them in any kind of awe! I know there are really good dedicated docs about tho... ;D

How often and long are tey saying for you to use te TENS brace? Know what you mean about being able to move the electrodes freely, I'm not sure about having it in a brace. Mind you, it might be a fantastic neat gizmo that gives you a bit more freedom?!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on June 19, 2012, 10:06:36 PM
Hey both

Just chipping in to the fun...I'm the CRPS foot person (Brams and I have bonded over this!). Mine started after a big toe fusion last year - I was diagnosed extremely rapidly at about 20 days post surgery and they think the CRPS set in about 17 days after - in fact I can pinpoint the start of it. Mine has stayed localised to my scarline on the outside of the foot, my fusion site and a large blob on my big toe and tips of my other three toes along. It is still bad ebough for me too to be on Lyrica and also on Fluoxetine (Prozac) as a combination to help mood and to work with the Lyrica. Generally I am pretty controlled - my pain doc has never said I'll beat it but he is optimistic it might just kind of go away....to be honest in 12 months it has improved but I certainly wouldn't say it had gone into remission. I got a blister on the CRPS site on hols a few weeks back (attempting some trail jogging in hot weather..) and the whole CRPS areas went mental. It was terrifying. The symptoms you describe do sound like they might be CRPS but it is very hard to diagnose. I kind of nodded when you spoke of things being wrung out and torn to shreds. :-( Personally I think its better they kind of think it could be rather than leave it for ages and then not get you to the right treatment. I have all fingers crossed for you that it isn't, as it really isn't a nice thing to acquire.

Interestingly I googled TENS and RSD yesterday and found a few links about it being used in a bespoke knee brace. I think they've found that in normal TENS use and RSD/CRPS the effects of pain control haven't be transferred when the unit is off....but with this brace and more constant usage at different settings they've found some better results of pain reduction without the unit. Must be worth a try. Brams I will dig out the links.

One thing I find really useful is Epsom Salts - proper pharmacy grade ones, not cheapie bath salts with perfume in. Being in my foot I can stick some in an old trainer sock and kind of make myself a little sock immersion. Sometimes I wet my foot or put another warm damp sock over the one with salts in. Puttin them in a bath is also helpful. The theory is that they act as calcium channel blockers and help the pain signals stop firing. Not sure why it works but it sure does for me. Vitamin C is also important, and I find that if someone else can touch the area for me then it helps with that tenderness you describe.

It sucks that you also have fibro to deal with. I am convinced that these types of body responses are linked in strange ways. I think some of us are wired to react in an off the scale way. It is frustrating. I have every hope that mine will go away - to be honest if I didn't believe that I would sink. I am VERY active now through forcing myself to use my foot. I am lucky my surgery was 100% successful so the fusion has worked, but I traded the pain pre op for this now! The bone loss worries me as of course my foot is held together with screws - I don't want those failing on me and my bones falling apart.

Good luck on Friday and keep us posted. There are not many of us out there (special we are...Yoda voice..) and good luck with the WC too.

Lottie x
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 20, 2012, 02:42:46 PM
Thank you so much (both of you) for all of the information. I have a feeling I probably won't be getting the bone scan on Friday since I have not heard anything from WC. The hospital will not just go ahead and do it without their approval. Depending on the report from the IME doctor that I visited on Saturday, I could lose all treatment, which I know would NOT be good if this is CRPS (or anything causing this pain, but especially CRPS). My OS took me out of work last week pending the IME report. I can't tell you how much better my knee actually feels not running around on a concrete floor for 8 hours a day. Not working I can stop and sit if I am in pain, but not at work.

That is interesting about the knee TENS. I have looked it on on the site of the manufacturer and it looks great. I have 2 knee braces though, so I don't really need the brace. The electrodes stay in the same spots all the time. My PT has told me to move the electrodes around for desensitization and better pain control if one spot gets used to the stimulation. I would not be able to do that with the one inside the knee brace. I can place the electrodes where I want them and put my brace on over them with the free electrode unit. Also, if God forbid this is CRPS and it spreads, I could use the same TENS unit for other spots. I am trying to think logically and frugally also.

I like to hear that you have remained active with CRPS. I know this is an awful condition, but the more positive stories I hear make me more hopeful. I guess it really is "move it or lose it."
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on June 20, 2012, 02:51:28 PM
Hi Flutter, bad news on the bone scan and I really hope they don't pull treatment from you.....you are bang on with move it or lose it with CRPS. There is of course a fine line - 3 months post surgery and still with pretty swollen/red annoyed foot I spent 7 hours assisting at a local fete in a heatwave (uncommon in UK!). They were hideously disorganised and I literally spent the time running about like a headless chicken sorting things....ooooh big angry foot for about 7 days after. Too much is not good...too little is also the enemy....

I am really active so there is life with/after/during the condition. I train at the gym 5 times a week, spin, weights, row, lots of balance work and core stuff...I am fitter now than I was 20 years ago with a better body than I've had for the same length of time! I walk a fair bit, although again...too much in hot weather is not good....but I did about 12 miles one weekend with a friend's dog on a beach on a weekend break and was dead impressed with  myself! I can stand on tip top (not easy with a fusion!), I can do plank and push ups on my toes and foot...I can never really discount the impact of my foot and possible flare ups but it is manageable for me with my current meds, apart from the flare ups when I do something silly e.g. trail running on a hot evening in thin trainer socks = blister on CRPS site = big big pain and bad reaction. But the fact I could do the run was really great!!!  8)

I still have everything crossed for you that it isn't CRPS. It is an awful condition but it feeds off negativity - literally. When I get anxious or upset or down it gets worse - because of the systems involved. Brams and I have meltdowns to each other and it is good as we truly get it. Keep us posted on here and we'll be here to support whatever the diagnosis is. I have all fingers and cats' paws crossed that it isn't.

Lottie x
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 20, 2012, 06:32:42 PM
I am so sorry. I feel like I hijacked this post and I did not mean to. I was just trying to share according to the question asked. Thanks though for the info and the support.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on June 20, 2012, 06:48:12 PM
You haven't hijacked anything! Anyone with or possibly with CRPS needs as many people as possible to share with - and that includes me and Brams and anyone else reading. Your input would be really interesting regarding the TENS.

Lottie
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 20, 2012, 07:06:49 PM
Thank you. I did talk to the PT today about the knee brace TENS and she did agree with me that it would probably be best to get the one with the free leads. The goal right now with the unit is desensitization (and pain relief), but mainly desensitization. If I were to leave the electrodes in one place, those spots would just become sensitized to it and there is no way to move them around with the knee specific TENS. My reasoning sounded correct to her and she said though that it was up to me which one. Since I have 2 very good knee braces, I don't really need the support and I can wear the TENS under either brace.

Still no word from WC about whether they will pay for the bone scan. I guess if I don't hear by tomorrow I will have to postpone it until I know they will cover it. My worst fear is that they pull me from any treatment, which could make this worse if it is CRPS. I will fight it though, I have a good attorney.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 20, 2012, 09:43:07 PM
Hi flutters by,

My computer is determined that you should be 'flutters by' rather than without the space! No question about whether you should be here - I'm really glad you responded to my post, and interested to hear how things go :).

Good to hear you are all read up on the TENS stuff, definitely a good idea to move those electrodes around. I'm interested in how it works with the pain - do you feel any relief straight away or is it gradual? Does it last long afterwards? Do you get any redness etc at the electrode sites? I could probably think of a dozen other questions, but you get the idea!

Darn money issue always raises its head.... ::) Hope you hear from them in time. Having said that, I haven't had a bone scan for mine, and I don't think Lottie has had one either, so it's not the end of the world! Best to adopt a c'est la vie approach to these things we find!

CRPS is damn weird, there's no getting away from it. If you've got it, you'll cope, because that's what you have to do, and life still goes on... If its not CRPS then you can have a happy little (careful!) dance around your kitchen, vino in hand, lol, and we'll be glad to hear it!

Keep posting! As Frasier said.....I'm listening.  8)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 20, 2012, 11:29:07 PM
For me, I think the tingles of the TENS are a distraction from the pain. It does leave the area numb after a little while on there. The one they use in the office has WAY more settings and one day she had it on in a way that felt like a massage and at first it hurt but after I got used to it it was great. I haven't been able to get them to figure out how they had it that day. When I go in, my PT does ultrasound very lightly for heat, then does some massage and pressures for desensitization. For the past 3 sessions I have gotten iontophoresis (sp?), which is a way to get a steroid into the area without a needle. They place an electrode with a pad for the dexamethasone on my affected leg and another electrode on the other leg. It gets hooked up to a little blue box that is like a little jumper cable box. It has the leads with the clamps that hook onto each electrode. One is positive, and one is negative. The negative one is the side the medication goes into. It burns like crazy because it is an electrical current pulling the med in through the skin. Amazing stuff!! I don't know if either of you have ever had it done or heard of it. I don't know if this is why, but the swelling has gone down significantly in the past few days. Personally I think it is because I am not pounding the concrete floor at work since I have been out for a week now. I think the steroid may have something to do with too though. I know the shot the doc gave me didn't do a darn thing.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 20, 2012, 11:47:10 PM
Hi flutters by,

I'm intrigued by the TENS now.....my pain doc seemed to think that because CRPS is the nerves jangling, that to excite them with the TENS is a bad idea. Just goes to show how it all depends who you get, and their approach. I've had no exciting things like yours tried at all! I'm quite jealous, lol. I'm just taking the nerve meds and painkillers as required, I have physio (very basic exercises, no massage, no gizmos or gadgets), and I get on with things as far as possible.... ::)

The steroid thing sounds very clever, might mention that to the pain doc in two weeks when I see her. The OS told me there was no way he was doing a steroid injection into the knee with the CRPS there, and that he wouldn't advise it into the joint anyway as it degenerates the inside of it. Presumably this method circumvents all those risks. Hmm. The swelling is one of the worst things for me, it really swells up sometimes and looks like a rotting whale carcass or something ;D.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 21, 2012, 01:23:21 AM
I don't put the electrodes over the most tender spots, just as close as I can get to them and if it hurts, move it or turn the juice down a bit. I have been researching quite a bit since being pre-diagnosed with CRPS. It seems like TENS is pretty common, and desensitization is a must. Tonight it is not helping as well with the pain inside my knee but I know that I am not only using it for pain control but for the desensitization aspect of it.

I can't believe I live in a tiny town in northeastern Michigan and I seem to be getting more up-to-date care than others. I am thankful, but I know that WC can stop it at any time. If they don't approve the TENS I will have to send it back to the company it came from. Bummer if that happens. Also being off my feet and not running around on a concrete floor at work for a week has really helped in my opinion and I am AFRAID AFRAID AFRAID of going back to that pain if they tell me I have to go back to work right away. It was all I could do to work a full shift, make it out to my car, into  my apartment and into bed. Forget about washing dishes or cleaning the house. I have actually stood in the kitchen and washed 2 full sinks of dishes this week. It's hard to work and then not be able to do the things that absolutely HAVE to be done to survive, let alone not want to do anything fun or active because of pain or fear of pain later. I have so much respect for people with CRPS and other chronic pain conditions that can push through it and do those things. I want to be one of them. I just have to figure out how to do it.

I forgot that I was going to say that yes, CRPS is a nerve thing. But from everything I am gleaning it is not the same nerves that the TENS stimulates. CRPS affects the sympathetic nervous system. TENS is very non-invasive.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 21, 2012, 09:27:57 AM
Hi fluttersby,

Yes, the desensitisation is very important. I don't use TENS, but I do touch and rub my knee all the time (looks odd, but sod it!) which is cheaper and less complicated, lol ;D. As far as the nerves themselves go, I'd have thought the TENS unit fires off the sympathetic nerves AND the deeper main nerves like the saphaenous (?). I'll have to look at this now!

I totally get your second paragraph (and I know Lottie does too). It is hard to just try and carry on as normal when it's the last thing you feel like. I'm so scared of falling over and grazing my knee now. I knocked it against the edge of my desk the other day and I got the initial knock pain, and then like a masive whoosh this deeper burning over-the-top type of pain that I knew straight away was the crips. And that didn't break the skin! I dread to think what a graze or cut would feel like.... The thing is that you can't do it. You can't think 'what if...' all the time or you wouldn't get out of bed! ::)

I used to work in a specialist shop, and loved it, but it was all walking and standing and unpacking and carrying....my leg was swelling so much before I even had the arthroscopy! Afterwards when recovery didn't go as planned i couldn't go back when I'd planned to, and then once the crips was diagnosed but physio didn't progress as hoped I just KNEW. We really needed the money too! So I had to quit, and I've now started up my own business doing tutoring, which I can sit down to do, and pick and choose my hours... You do what you have to.

Ah, hark at me! I haven't got this all worked out, and some days are dark and hopeless. But not many! 8) ;D

Take care out there today!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 21, 2012, 09:52:33 PM
AFter I wrote that about the TENS and the sympathetic nervous system I thought twice about it myself. They say it does 2 things--relieves pain through the gate system (which I guess is similar to when you hurt yourself and rub it to relieve the pain) and it is supposed to also release endorphins. So I am guessing it works on more than one level as well.

Had to cancel the bone scan for tomorrow because I haven't heard anything from WC. I don't even know if they are going to pay me while I'm off if they don't agree with this stuff. I don't have the report from the IME yet.

It's not been the best day here. Yesterday the swelling had been down to almost not noticeable.  Today it's noticeable and I had an appointment with my GP and he clearly saw it and noticed the assymetry of my knees. Color was good today though. It was a WARM examining room. He said he will help me in any way possible with WC since he's been treating me for about 4 years and I have NEVER mentioned any knee pain at all.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 22, 2012, 09:39:49 AM
Hi fluttersby,

Glad to hear your doc will support you, that's half the battle! Hope you hear about the WC soon, it must be very frustrating... ::)

It's annoying how changeable stuff like the swelling is - mine's always got some going on, but at times it's really bad and I'm afraid to stand up in case it all explodes! Now there's a thought....

I remember them mentioning the endorphins thing when I had a TENS for labour (lol) so I can see that argument for using it. And I recall my GP saying something about the gate system. I shall be seeing the pain doc early in July, so I'll write down some questions to drive her mad with!

Have a good day there. It's grey damp and chilly here, which the knee is not fond of. I have my first course session today of relaxation and learning to control pain through meditation. Am not a believer in that kind of thing, but the mind is a powerful thing, so I'll give it a good go.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 22, 2012, 04:38:32 PM
I did not get the TENS from or on the advice of a pain doc. It is part of PT and from my PT so that could be a difference in thinkiing there.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 25, 2012, 04:53:46 PM
The iontophoresis (dexamethasone) through the electrical currents is during my PT visits also. The first one seemed to help but now I'm not so sure. I had a really bad weekend. I hope I can get to the bottom of this soon. The discoloration in my knee seems to be getting more and more obvious.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 25, 2012, 08:37:49 PM
Have to confess that those words mean nothing to me! ;D But sorry you're having a bad time with it, the skin discolouration thing is very cripsy.... Hmm, hope it's not tho. I managed to tear half the nail off my thumb yesterday and nearly went through the roof with the pain, everything seems to overreact now! All ok now tho, think its just the initial nerve jangle thing that the crips gets a bit wrong ::)

Hope things have improved by now.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 26, 2012, 07:27:02 PM
The iontophoresis delivers dexamethasone which is a steroid through the skin by electrical current instead of with a shot. I explained it in an earlier post I think. You get one electrode near the affected area (in my case near my knee) and one on the opposite side for a ground. It gets hooked up to a small machine through what looks like little jumper cables. The medicine is in a little pad in the electrode and is drawn in through the negative current. I don't really understand it and it does hurt some because of the electrical current. It hurts on both sides but they can turn the electrical current down to where it is tolerable. The lower the current the longer the treatment takes. I thought it was helping but right now I'm not really sure. I am still waiting to hear anything from WC and I am still not back to work and not sure if they are even going to pay me for being out of work at this point.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on June 27, 2012, 08:43:15 AM
I need to dig about but there is evidence that suggests steroid use into a CRPS site is not beneficial......let me have a hunt about. I know the delivery method is different to a direct injection but the dexamethasone is still having a steroidal effect and its pretty potent stuff (had some in vial form for an eye issue last year..)

I am sorry you've had a bad weekend. I'll return to the Epsom salts suggestion - it is simple and cheap but it can help without any contraindications using it in a bath etc whilst you're trying for a diagnosis. Also I am assuming you're not being told anything daft like to ice it or do contrast bathing - ice is a big no no  and contrast bathing is actually pretty pointless and can confuse the system more.

Can you post a picture of the discolouration when it happens? Does it happen spontaneously or only when you stand?

Sorry this is still going on. Good luck with hearing from WC,

Lottie
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 27, 2012, 09:03:57 AM
Hi both,

Yes, I'd heard about the steroid thing being a bad idea as well, recently from my surgeon who said that they can always tell patients who've had steroid injections when they operate because of the calcification of tissues inside the knee, and CRPS would make it worse.

BUT  ;D that is steroid is delivered by injection, so a diffuse method like fluttersby is describing may indeed be less harmful, although as Lottie says, it's still steroid... ::)

I find it very difficult to find definitive information on this danged condition!!! No-one seems to agree....

Fluttersby, sorry you're still in so much grief with this. You are wise to question it with your doc before they do it again. With CRPS anything that causes pain can set off the nerves over-firing, and if the treatment itself is causing pain then that may be why it's hard to see a benefit. I can back up the Epsom salts thing - Lottie introduced me to it, and it really does work. It seems to take the heat out of it and calm everything down. I have a piece of cloth I use; I damp it and then put a couple of spoons of epsoms in and fold it neatly and put it on the red bit.....within ten minutes you can literally see the difference. Give it a try, you can get the salts online.

Well, I have painful tingling in the top of my thumb and middle finger, less so in my first finger. I am getting twitchy about this not going, if anything it's getting more noticeable and hurts now when I type! I'm rubbing them and doing the stuff I should, but it's not making a difference yet. Knees, toes and fingers were like that first thing - really great start to the day! :-\

Hope you both have good days.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 28, 2012, 02:36:51 AM
You are both correct and today my PT told me she wasn't going to use the iontophoresis anymore because she is starting to believe it really is CRPS and would not be helpful. There are other things going on in my knee as well such as a tracking problem with my kneecap and that in and of itself is painful.

My PT put me on some exercise machines today for the first time. First the bike, which was difficult but after my knee loosened up some it was a little easier. I still did most of the work with my other leg and arms. Then some squats on the total gym and then the stepper that you sit down to use. She is very concerned that I keep a good range of motion and  keep weight bearing ability. I have no problem straightening my knee but I dont' have a good range bending. She did infrared treatment and massage and noticed all the color changes and said it was very typical of CRPS that it changed colors so quickly and there were many colors on my knee. Tonight my knee is very swollen, probably from all of the exercise today at PT.

Two weeks ago when I went to visit the OS, he injected a nerve with lidocaine to try to diagnose a neuroma. It left an awful bruise. It is 2 weeks and the bruise is still very blue and has hardly gone away. I even asked my PT about it wondering if maybe a difference in blood flow from possible CRPS could cause a bruise to dissipate slower(????????) I've never had a bruise last that long.

I am going to sit in the tub with epsom salts. I bought some specifically for that and I know it is a good treatment for any kind of body aches and it is even supposed to relax you and help you sleep.

Thank you both for the info and encouragement. It's appreciated and I hope that both of you have restful evenings.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 28, 2012, 09:23:15 AM
Hi fluttersby...(and Lottie!),

Right, I need to get my head around the timezone thing - I'm in the UK and it's 9 am now, whereabouts are you? I'm guessing the US or Canada?! Whatever time it is there now, hope you got some sleep...

Three cheers for the Epsom salts!  ;D Glad you got some. Try the damp sock type of application as well, it's honestly really REALLY good at taking the heat out of the burning type of pain that you get sometimes. Glad also that your PT has decided not to use the machines anymore - I think that's a wise move while the possibility of CRPS is in the air.... The colour changes and swelling are quite typical of it, but it'll be interesting to see what the docs think.

The nerve injection thing sounds quite painful. Did it have any effect? Was he using it to diagnose? I agree that the bruise thing hanging about too long could be a CRPS thing - it is associated with poor blood flow ::) Did the epsoms help last night?!

I am off to meet up with a KG friend today for lunch and I suspect some shopping ;) The weather is going into be amusing I think - heavy rain at times, but otherwise humid and potentially stormy!! Might be rather a bit of dashing (of a kind) for cover!

Have a good day,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on June 29, 2012, 06:20:27 PM
I am in northeastern Michigan in the US. I did not get to use the epsom salts yet. I need to try it. It's just been so darn hot here. It was 87 degrees last I saw. It's my birthday today, not a very great one with everything so up in the air for me. I am still waiting to hear ANYTHING from worker's comp. They are playing games with me now I think.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on June 29, 2012, 07:46:05 PM
Happy Birthday fluttersby!!!!!

Hope you have a good time anyway, the WC thing could take a while so just enjoy your birthday - sod them!  ::)

Do pease try the salts - dealing with heat is what they do best, they feel very cool on your skin - its lovely!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: milligan1967 on July 13, 2012, 07:33:09 PM
I have RSD in my R knee following multiple surgeries over a six month period.  These surgeries came after injections and draing of the knee and draining twice after surgery and one more shot.  Pain management doctor said it was caused by the surgeries being to close together.  Seeing new ortho doctor, who ordered bone scan, which shows the zimmer implant device might be coming loose.  Have to have sympathetic nerve block once a week for five weeks to see if it is going to help the RSD.  Tired of sitting in recliner and wearing TED hose on that leg..  Dread the possibility of another surgery, would love to go back to work.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 13, 2012, 08:27:43 PM
Sorry you're having such s tough time Milligan... :-\

Hope the sympathetic blocks help with the pain. Sorry to be dense but what is a TED hose? What does it do? And more importantly, does it help the CRPS?! I don't know what a zimmer implant is either! Sorry... ::)

Surgery is definitely a scary prospect with this thing. I know that when my time comes I'll just be remembering the awful pain and sickness after last time... The pain people say there are things they can do before and after though, now they know it's in there. Will be crossing everything, that's for sure!

Take care of yourself,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 13, 2012, 11:54:38 PM
Hello all. I have good news as far as the worker's comp doc agrees that CRPS is the likely diagnosis for my knee and has recommended that I get the bone scan and the referral to the pain clinic. It's a relief to know that they are going to take care of it so far at least.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 14, 2012, 03:12:17 PM
Well, I'm so sorry the CRPS diagnosis is pretty much confirmed....not the news we were hoping for you, but hey, you belong to a select band of Special Ones now. Welcome, fellow traveller. Lol.  8)

But.... As far as the WC goes - Hurrah!!!!  ;D
Thank goodness for that, let's hope the bone scan and pain doc appointments come quickly...

I've been thinking about your comment about the CRPS affecting a bruise, and I think you're right on the money there. I was sat a couple of days ago with a tray edge digging into my lower legs for about half an hour. It wasn't painful or anything, but afterwards on both legs I had that indentation and redness you get. It disappeared from my R (normalish) leg within a few minutes, but it took nearly two hours to even out the skin on my L leg. I got quite alarmed as this dent just stayed there looking just plain wrong.... :o The blood flow being diminished would logically affect things like indentations and bruising, because with both, it's the blood flow to the tissues that resolves the damage.

Now the doc does think it's the crips, definitely stay away from ice, electrical impulse stuff and stress!! Stroking, touching, rubbing etc is all good though...looks weird but the crips likes it.

Take care of yourself, a bit of pampering and relaxation is definitely a Good Thing with this :)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 14, 2012, 04:10:47 PM
The bruise from the injection on my knee is still dark blue and it was given to me 4 weeks ago. When I saw my ortho about a week and a half ago he said it can be normal in some people and that he probably nicked a blood vessel (that's how you get a bruise anyway I thought). However, my PT's think it is very strange that the bruise is still as dark as it started out and it is not dissipating or turning green, yellow, etc. like you would expect a healing bruise.

I only have one more PT session before worker's comp has to approve more, but I'm sure they will with the opinions of their doc being what they are.

I don't really know the rules about posting links here, but there is another forum I visit called "healthboards" and there are pages and pages (upon pages and pages) of peoples' experiences with CRPS/RSD and I've really gleaned some good (and not so good) info over there. Mostly good though and alot of good support so if any of you get a chance to check it out, you just register as you do here and search under Reflex Sympathetic Dystrophy.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 14, 2012, 07:03:19 PM
Yes, I know about the RSD/CRPS boards and have read bits and pieces.....

The issue I have with them is that they seem to fall into one of two grooves, the ones where people have had their lives destroyed by this, spend their whole lives in terrible pain, and tell really REALLY awful tales of dreadful things that make you afraid to be alive with it in your body.... And the others where it is predominantly over-cheery people saying things like 'omg, my leg fell off today and I was in so much pain I nearly strangled my dog I was hugging her so hard, but I laughed it off because you have to don't you, lol, and went and ran a half-marathon and cleaned out dog kennels for a charity all evening, and now me and all my doctors are enjoying champagne and canapés on a yacht overlooking Sydney harbour while I have a spinal cord stimulator fitted.....' I may well have misunderstood some stuff...no offence to anyone intended.

You can, as you say, pick up some interesting and useful info, but there's just too much scary stuff for my liking, and I'm not ready to spend my days panicking about every little thing and picturing the worst just yet.... And I know that if I read too much of that stuff, that I'll get sucked into the spiral of obsessing about it!! Don't get me wrong, I do worry, and I do have problems with this horrid thing, but so far I'm in fight mode, and trying not to let it affect me too much. Maybe it will get that bad, maybe it won't. Maybe I'll get run over by a bus next week. Who knows? The docs certainly don't seem to.... ::)

Obviously, I am devoting a certain amount of my time writing on KGs about it!!!! ;D But not too much I hope....

I don't know the answers, and I'd love some useful advice and tips on things that help. Equally if I have anything to say that helps anyone else I'd be stoked.....dream on Brams!

Hope you're all having a good morning, afternoon or, as we are here in the uk lol, evening!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 14, 2012, 08:09:23 PM
I definitely agree with you about most of the forum boards. I do like "healthboards" which is the specific name of the board and website actually. Not sure if you've been to that one. I know what you mean about everything you say though. BUT I really can see the value in that forum (and from what I can see really only that one because the other ones do seem to be more the way you say). There are ALOT of people in there with very advanced cases. I pray I NEVER have it to that extent, but consistently I hear get diagnosed early, get treated early, and hear the meds and treatments that are current, not only here in the US but all over the world. I take what I feel I need to know and then I know if my docs are treating me with current and common treatments, etc. Also I realize that for alot of those people on there, there is no one else in the world that understands what they are going through and that they can be truthful with about how they feel.

And I'm not trying to diminish in any way the help I've gotten here. I haven't even been "officially" diagnosed yet. What I get between the two boards are that if I don't want this thing to take over my life I need to make my doctors listen, get diagnosed and treated early, work through the pain (gently though) and most valuable I think is that if I give up and don't move it no matter how much it hurts, I will lose mobility and that's the worst thing that can happen. I hate that I only have 1 more PT session until the next series gets approved.

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 14, 2012, 09:16:44 PM
You're right there.

There's a lot of valuable stuff around, and you do have to 'filter feed' your way through everything to find it. I agree that it's sooooo important to look around for what treatments help to fend CRPS off - as you say, early treatment is important, and the idea is that if you get on top of it early on then you will hopefully NEVER develop into one of those awful, tragic, extreme cases....

As you say, you haven't been officially diagnosed yet, and there's a chance that your doc is wrong and that it's not CRPS, but if it IS then you have a really good attitude I think, and every chance of keeping yourself healthy. The tricky think about CRPS is that there is no consensus on treatment, so it really is very much up to us to research our options and push to get the treatment we think will benefit us. I'm finding that part of it very difficult, having always relied on doctors to tell me what treatments THEY decide will be used.

I agree completely on the physio thing. Mine was stopped a few weeks ago after months of PT, and I think I was lucky to have it for so long, but it's definitely harder to motivate yourself without that regular checkup with your physio!!!

Take care Fluttersby, have a great weekend.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on July 14, 2012, 09:43:22 PM
One of the MOST useful things I discovered when I was diagnosed was some random person's blog about how he'd "beaten" his RSD in his hand. He mentioned Epsom Salt wraps, DMSO and exercise.

Being me, I immediately ordered Epsoms, DMSO and went hiking.  ::)  I still use the Epsoms today - after a flare it is the SINGLE best thing at taking away the pain, swelling and redness. I am "lucky" I guess that my RSD is SO localised, you can draw it onto my toe, joint and tips of other toes. Easy to stick them into a sock filled with the salts. I bought the DMSO - google it.......it is not licensed for use in humans but they use it a lot with horses for inflammation. Well, I stuck it onto my bad bits, 3 times a day for a week. It made my skin wrinkle a bit, it sure didn't smell that great...but to be honest i think it helped! I haven't used it now for a year or so but I still keep it in my drawer - bought some weaker 60% with wintergreen so it is kinder to the skin....never ever use anything stromger than 70% on yourself!

I also follow a blog about someone who has overcome terrible RSD first using meds and now following a high raw vegan diet. I haven't yet managed to drag myself to that level but one day.....I guess I should try it...I am convinced we CAN get our bodies to start to behave and revert.....it is very hard to find a way to do that though.

Moving is a huge thing. PT is important but to be honest, following a schedule of basic exercises and just bending the joint, trying to use it as it should be...my top joint of my big toe was solid when I was diagnosed. The other one where it joins the foot is fused, so it was meant to be! My doc MADE me gain control over the top joint. That bit was bright red, sore, tender, yet numb. With loads of effort and constant flicking of it, trying to fire it...it now works like a dream. I can claw it into the carpet! I am always moving it, along with my other toes, ankle and knee on that leg. Do as much as you can with bits around the RSD affected area, it seems to help.

Good luck and keep us posted,

Lottie
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 14, 2012, 10:22:52 PM
Ahhhhhh the Epsoms, Lottie....... 8) :)

I love the Epsoms. They are like magic on my knee when it is red and raw and flaming....

You do what you can, and you do what you have to - and you keep on and on doing them. Ad infinitum. ;D

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 15, 2012, 09:33:41 PM
I have tried sitting in a tub with epsom salts. I think I need to do it more. This all started in/around my knee but now I have a slow burn from the top of  my thigh to right above my ankle. Having anything on those areas for very long hurts like crazy. So, for me, it has spread from the site of original pain. I told my PT I was going to start wearing skirts and dresses but I live in the snowy white north, so there needs to be a much better option. The fan blowing on my leg hurts but if I cover it that hurts. It's hot so I have no option but the fan/and/or AC blowing.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 15, 2012, 10:11:58 PM
Ouch...

I can never remember the technical term for that over-sensitivity thing - I hate that, the leg of my joggers is rolled up at the moment as I'm typing because I can't bear anything on it! I do touch and stroke it etc like you have to, but I can't do that ALL the time!! :o It's not red though, so I'll hang fire on the epsoms for now.

Mine has spread from my knee to two-thirds up my thigh at times, with one Great Red Spot in mid-thigh, but luckily it's not all the time. It has spread to my left foot though, and at the moment my toes are fat, red and hurt like hell. They're loads bigger than my other toes and feel like some demon is sticking pins all over my toes and ball of my foot. :-\ Time to get the old sock of epsoms out I fancy.... ::)

I had horrible jaw and toothache this morning, but it seems to have passed for now. Im in fear of having to have something dental done, I hate dentists at the best of times anyway! I've got an appointment tomorrow for a check in case there is something amiss, so will have all fingers crossed. I've got to take him an info sheet on CRPS so that if he does have to plan for anything he can be prepared. I read about crips and dentistry this morning and apparently they need to use a different numbing injection to normal, and use more of it, etc. Great.

Hope your leg has calmed a bit by now. It might not be the crips spreading, sometimes you can get a thing called the RSD rash, it doesn't mean your crips has spread, just that it has set off a different area for a bit of a lark ::) I'll hope it's not that anyway!

I find fans painful if my knee is sensitive. I prefer to rinse a cold flannel, wring it put andut that on quite firmly. I find that firm touch is lesser full than light stuff like fans or clothes. Tricky if the whole house is roasting though... :P Sometimes you just can't win.

Keep smiling when you can, and have the odd nip of something nice. Ha a small tot of whisky earlier, it was lovely!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 18, 2012, 04:37:20 PM
Well, it seems my worker's comp company wants to play with me again, so this is going to be another fun few days or weeks.

My sister was in town from Texas over the weekend and I think I overdid it a little spending time with her and her family. My last PT session was yesterday until my doc (who is out of town until next week) approves the next plan of treatment (and the WC has to approve). I'm concerned since yesterday evening that my foot on the same leg started aching and feeling that weird sensitivity. I have already pretty much decided to wear dresses and skirts as much as possible to keep everything off of my leg, especially to keep the pain down in public so I can function as much as possible when I have to. Not sure what I will do if it starts affecting my foot like that. This is truly scary stuff and I haven't been "officially" diagnosed by the pain management doc yet.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 18, 2012, 07:35:32 PM
Eek. You definitely need to be checked properly and diagnosed or not - and they need to stop mucking about and do it ASAP. This stuff is indeed scary, and needs treatment started promptly. A nerve treating kind of drug like Lyrica (pregabalin) or amitriptyline or Gabapentin might help - it worked well for me to start with. I hope you can get seen soon, this WC lark seems like a complete pain in the arse.

Just try not to panic and think the worst. I hate people saying it but it's true - anxiety makes CRPS worse.... ::) Oh how ironically marvellously cruel! It's also very important to keep the limb moving, weight-bearing etc, so don't stay still for too long, do as much as you can bear. Also keep rubbing and touching it, treating it to different sensations - the worst thing you can do is to sit still for hours with it held immobile and untouched - the crips really kicks off then - I find mine is always worse at night when I sit down and try to relax and watch a bit of tv, etc.

My jaw/tooth pain thing was checked over and it was just me clenching and setting the nerves off, thank goodness. More relaxation, more meditating, more calming things....and less pain would help as well....oh well, I'll try!

I've had a busy day, sat down after tea, put the tv on....so my knee is cold and icy, and my left foot toes are on frigging FIRE. Fat and red and painful. Ouch. My R toes are also hot and hurty, but not as bad. They'd better not have any ideas....

Take care of yourself, and keep on at whoever you can to get you seen quicker.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 20, 2012, 05:33:14 PM
Thank you. All of your advice is exactly what I have heard and read everywhere else. Yes, when I get stressed or panicked, the pain is AWFUL. I told a friend last night that I felt like my leg was  having a baby (in labor). Isn't that crazy. She did look at me like I was crazy, but that's how it feels at times and I have to slow down and breathe at those times or I can't carry on a conversation. I don't even want to get out because I don't want to get like that out in public. Wow!! I sound like a baby, but this is how I feel.

It's a nice cool day out today though so I think I WILL try to get out and walk a little since I'm not in PT anymore at the moment. Thanks for listening to my venting. I don't usually do that too much.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 21, 2012, 11:52:59 PM
Hi fluttersby,

Don't worry about the venting thing, I think that's what KGs is for!  ;D

I understand the fear of going out, but you have to try to ignore it otherwise you can end up being afraid of every situation and not doing anything. Things only get worse from there.  You will get used to the weirdnesses of the crips and be able to deal with it better, getting some decent treatment is the first step. Might be worth going to see your GP and asking to be started on one of the magic three in case the diagnosis is confirmed.....amitriptyline, pregabelin (Lyrica) or Gabapentin. I had some relief within three days when I started it, it's made all the difference. I still have some pain, but it is much less and behaves itself slightly more.... ::) Early treatment is key, so push for them to try something rather than keep you waiting.

It's important to keep doing your PT as much as you can, CRPS and inactivity are a painful combination. Sadly, R and R don't work with this!

Take care and have a good weekend. The nice weather has finally arrived here (long may it last...) and the smell of BBQs was everywhere this evening!!!

Brams  ;)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on July 23, 2012, 03:46:04 AM
I have been on Neurontin already for awhile for fibromyalgia, although a pretty low dose. No doubt it needs to be increased. Lyrica does NOT agree with me--caused so much fluid under my skin I couldn't stand it and couldn't remember anything either. Thank God I have a pretty much standing script for Norco or I would be going crazy. I know some people don't agree with opoid meds, but it's been a lifesaver.

I have the bonescan tomorrow, so things are rolling in the right direction.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on July 23, 2012, 10:20:19 AM
Eek! That Lyrica reaction sounds horrible... :o Glad your bone scan is at last here - hopefully it will be able to answer a few questions. Hope everything is well and healthy!

It's suddenly summer here and the temperature has gone up by ten degrees in a couple of days - don't think the crips is keen at all! Luckily we still have a nice cool breeze, which I think has stopped things kicking off more than they have... ::) I'm finding that I burn very easily now, so the factor 50 is being kept busy. Pain in the a*#e!! ;D

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on August 03, 2012, 01:01:05 AM
I haven't replied on here in awhile, but now I finally have some news. I had a bone scan, but it was negative for any changes. I also finally went to a pain specialist today and he officially diagnosed me with RSD. I'm not happy about the diagnosis, but I am glad that now things can move forward. I get my first sympathetic nerve block tomorrow. I think  I got a really great doctor. He is coming in on his first day of vacation to do my block and he said he will make sure worker's comp doesn't give me any trouble over this.

I am hoping I get some relief from the block.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on August 03, 2012, 01:24:23 PM
Hi again!

Well I'm really sorry that you did get the diagnosis, but as you say - at least you will get proper treatment now. I'll have my fingers crossed for you with the nerve block... Please let me know what happens and if it does help, because it's something I haven't been offered yet, and if it really works it might be worth pushing for!

Take care of yourself and keep that knee moving, CRPS hates sitting about!! Darn... ;D

Off to do some tidying and practice what I preach!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on August 04, 2012, 05:11:57 AM
The nerve block actually did help. Immediately after I did't have the sensitivity. It's been pretty good all day with just small bouts with the pain, nothing like before. But now it's almost worn off I'm afraid. But this is good, it means I have a good chance of responding to the blocks. By the way, it was painful to me anyway. I did have some sedation==versed and fentanyl.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on August 04, 2012, 11:31:58 AM
As you say, it's good that they now know your pain is sympathetically maintained, they can target your pain relief more successfully (hopefully!!). Ouch though, it sounds like it was a painful procedure. Do they ask you to stop all meds before they do it? I completely forgot my meds a couple of days ago - I went away for a night with a friend and just forgot in the distraction of the journey on the first day - and really paid for it. Made me realise what those meds are keeping at bay. Scary stuff.

We're completely rethinking a holiday we had planned for next year....the crips didn't like travelling or heat!!

Glad your doc is a good guy - I'm still trying to find one of those ::) Seeing a different doc in the same hospital next week, I have everything crossed that they're not a cold unsympathetic woman like my pain doc at the moment... :-\

Trying to galvanise the children into helping with the housework today....hmmm. Optimism all the way!!

Have a good day.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on August 05, 2012, 03:56:55 PM
The only meds I would have had to stop would have been like NSAIDS or anything that would thin my blood. Man, I can't type anymore. I used to type 90+wpm but now I am so dyslexic with typing and leaving out letters, etc. I think it must be CRPS related. I've heard it makes cognitive changes.

The block did help me for that one day but of course I couldn't do much with my new found pain relief because I was supposed to take it easy for a few days and I couldn't drive for 8 hours. I am back to the old cripsy self now. I go back for the next block this Thursday.

I can't imagine going somewhere and forgetting my meds. That had to be an awful trip.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: fluttersby on August 10, 2012, 02:13:37 PM
Well, the 2nd block actually seemed like it was going to be more effective than the first. Immediately after, my whole leg got hot and pinked right up with improving blood flow. Of course my back was sore where they did the injections, but I had no RSD pain----until later that afternoon when it crept back in. Not sure what will happen now. I don't know what worker's comp is going to approve but I know the doctor is starting to talk about longer acting pain meds (thank God) or the fentanyl patch.
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on August 10, 2012, 03:51:23 PM
Hi fluttersby,

Wow, that doesn't seem long for the block to work - is it meant to last longer or is it just a diagnostic thing to see if it's sympathetically maintained? Hope they can now sort you out some form of pain meds that don't involve having needles stuck in your back every few days... ::)

I've been reading up at the brain changes with CRPS, some very weird stuff - one recent study said that your ability to make reasonable emotional decisions is affected, as well as quick mood changes with anger and frustration, also the good old confusion, speech issues and language hiccups. All sounds about right... 8) I suppose it's good to be aware of these things.....

It's really hot here at the moment - I'm wilting a bit to be honest, it seems to make my foot in particular much worse, and I burn VERY quickly now, so I can't be out in it too long....grrr!!!

Take care and good luck with the pain meds.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 03, 2012, 04:16:13 AM
Hi everyone

I'll join in....
I have just been diagnosed with CRPS.  After 4 knee arthroscopic surgeries over the last 3 months, 3 and a half weeks in hospital with unbearable pain (and blood clot and staph infection) and a knee that refuses to bend the OS has finally named it as CRPS.  The OS said he suspected this a number of weeks ago but had to wait for all my other problems to settle down before he could say anything.

At my worst, my pain caused me to scream and cry all day (and an ambulance trip to hospital) - I couldn't move or touch the leg without spasms of pain.  Now, I am on Kapanol and Endone through the day and night and I can live with the pain.

The main concern now is that my knee is so stiff that it refuses to bend.  I have had 4 weeks of physio and made no improvement at all!  I am also having trouble weight bearing through the leg b/c of pain so it will be a while before I get off the crutches.

At this stage I am just happy to have a 'name' to my problems.  I need to go read up and talk with pain DR and physio about what the next stage is.

I'll read through this thread in more detail as well.....

A big Hi to Lottiefox who has been encouraging me on my post op thread.
Kaddydee (Katherine)

A
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 03, 2012, 11:13:28 AM
Hi Kaddydee,

Sorry you've been diagnosed with CRPS in your knee......bloody thing  ::)..... Still, as you say, at least you know what it is now and can do your research and find your way through the fog. You'll get there. I remember all too well my first couple of months out from my arthroscopy when doctors, physios, surgeon et al, all were scratching their heads and saying I shouldn't have that much pain after a 'simple' arthroscopy with its attendant biopsies and debridement..... An infection and blood clot on top sounds like hell - no wonder your poor knee is in shutdown.

Sigh. Ah well. At least, having been diagnosed, you should now be able to start on the journey back to reality! The biggest thing I've found with having it in my knee is that you have to keep it moving - for you that means that somehow you will need help to start the thing off, and that means pain meds and a good physio who knows something about CRPS. I had a lovely physio but she didn't know a thing about the crips, and was a bit scared of it. Most sessions we didn't do many exercises, just talked and planned. That in itself was helpful, but I'm waiting now to see a pain management physio with a special interest in CRPS. At last! Well, at some point hopefully.... ;D

You do really have to push for everything. Docs will hang about waiting to see what happens before making decisions, which can mean two or three months between appointments and decisions - and before you know it a year has slid by. I've not met many who actually know what it is, so you have to do some kind education along the way and explain stuff, which seems very odd.....I'm sure it was meant to be the other way around!

I would really really recommend a hydrotherapy course - it was the thing that turned the corner for me with movement. The warm water is very soothing, the people knowledgeable and kind, and the exercises gentle. You dose up on painkillers just before, are assisted into the water, and get kitted up with floats and things to help with the movements. They're very gentle to start with, but they will get your knee moving if anyone can. Along the way, the physios have been the ones to actually DO things and teach me about how best to actually deal with it. Even if they don't know CRPS, they know bodies, muscles and joints, and pain.

Make sure your pain is controlled, and give your GP some grief if you need stronger stuff to help you with physio.

Sorry if you already know lots of the above, can't help myself!! I know Lottie, and she has had CRPS for longer than me in her toe joint following surgery (as you'll know!). She's been a big help, and we jolly each other along and share the woes of it with a fellow sufferer....it all helps. ;) The knee is a big joint though, and things like the muscle weakening and tightening (joys of crips ::)) come into play a lot more with the knee I think. I'm finding it's becoming more noticeable now, although I have managed to finally get back my quad to some extent and my walking is a lot better now. You do have to work hard, there's no escaping it!

Anyhoo..... If there's anything I can help with then do ask or pm me. I'll be interested to hear how things go - everyone seems to get different treatments and pills and opinions, and you might be first with some wonder treatment that I can try.... ;D Getting on amitriptyline was my turning point with the pain, although I then had to move to Lyrica. The nerve treatment drugs (like those) were far more effective in sorting the deep pain than any painkiller.... I hope you can get what you need and have that knee moving a bit soon.

Take care and keep posting!! I'll drop into your post-op thread and read your story a bit. My post-op diary hasn't been updated for ages (bad girl), but all my early stuff is in there from op through pain and confusion to diagnosis and light at end of tunnel, so feel free to browse if you get really bored one day!!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on September 03, 2012, 03:11:54 PM
15 years with RSD in my left knee...if you need to know any just ask away....NETTAN
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 03, 2012, 04:34:26 PM
Nettan.....you did ask..... ;D

What do you find aggravates the CRPS most and 'kicks it off'? I find too much walking will start it off, other times of course it just starts for no reason... Is there anything particular you avoid doing?

Have you found anything that really helps when the pain and burning are bad? What painkillers work best? Have you doing any natural remedies that help?

Gosh, I need to think about this some more... 8)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on September 03, 2012, 04:44:22 PM
OH Kaddy.  :(  I am not pleased to see you here. Please don't take the wrong way! I was reading your post recent updates and had a horrible thought about whether you might have CRPS rearing its head. What treatment plan has your doc got? For me, getting into treatment early was the key but I guess having it in a big toe and tips of 3 other toes is a lot less invasive than the knee although I too went through the weight bearing, pain, etc etc....

Brams gives good advice and Nettan is a continual source of information on here for those with RSD/CRPS. There is also another KG member Silver14 who is currently battling RSD diagnosed a few weeks back and has had one block with good results initially but is awaiting further treatment. Make sure you get a proper plan of action in place - read up, ask questions. Treatments vary tremendously and you need a proactive team around you who will fight with you to get things controlled and your leg moving again. Movement is key for CRPS but with extreme stiffness and pain it can be very hard. Nettan is probably well placed to advise on options?

Avoid some of the horrific internet sites on CRPS. Some of the more well balanced ones will provide many useful tips and information snippets. One of my saviours has been Epsom salts - in a bath or in a damp sock. Super pain relief!! Cheap, non toxic and looks like cocaine along the floor of the bathroom in hotels.  :P

CRPS is vile but it feeds off despair. Like you, once I had a name for what was going on I was actually happier. I knew what I was up against then. You're a strong girl, I know that from reading your diary! Feel free to vent on here and to ask......as said it is not widely recognised and many docs seem ignorant of it or its effects. My GP who is great keeps calling it RSI. RSI in a fused big toe joint?! Wow, I'd be very unusual!

As said, I wish you weren't here if you know what I mean but welcome to the party anyway  8). Take care and keep us posted on the next steps (literally and metaphorically!)

Hugs xxx
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 04, 2012, 04:37:33 AM
Thanks Lottiefox and Brambledog for your thoughts and ideas.
Yesterday the OS and physio was certain it was CRPS, today the pain Dr says he is sure it isn't.
The OS has seen inside the knee 4 times and says it looks perfect and there is no mechanical reason for pain, hyper-sensitivity or severe stiffness.  The pain Dr says that I don't have skin colour change or burning pain (at the moment) and thinks all my pain problems are mechanical. He did say that I had many of the CRPS symptoms but not some of the main ones.   So, I'm stuck between the two Dr's!
WIth or without CRPS, they say the treatment for me is the same - pain meds and lots of physio and hydrotherapy to try and get this knee moving more than 20%.
My OS will see me in 7 weeks and if my pain has settled down he will do a manipulation (MUA) to get the knee bending.  That will test  if I have CRPS!!!!  Not looking forward to that!  If that doesn't work then we will discuss what comes next. 
No sure how I feel after today - as confused as ever.  I'll just keep doing all I can do and see where it leads me. 

Like you've all said, more and more I'm realising that it is up to me to be proactive and get the answers that I'm looking for.  Even though I think I have a great medical team around me, I know my body best and need to do what feels right for me.

It is wonderful that you all share your stories for novices like me to read and get hope/ideas from.    It has really helped me a lot on this journey.

Have a good day,
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 04, 2012, 09:14:57 AM
Hi Kaddydee,

Well I understand your frustration! On the other hand, it might be good news - the colour changes and temperature changes were my first symptoms (apart from the pain ::)) - if you don't have those then there IS a good chance you don't have it, which would be great news. It is really important to get that knee moving again though (CRPS likes an immobile site to start in), and it sounds like they're concentrating on that with the hydro and physio. I wouldn't worry too much about what you can do in physio yet - the hydro is far more likely to have a positive effect. Push for the earliest appointment you can get....

I will keep fingers and toes crossed that it isn't the CRPS causing your pain, and that things get moving soon. It'll be painful to start with, but if you do all your exercises it should get easier.... :)

Bloody doctors......I wish they'd all sing from the same flipping hymn sheet!!!

Take care,

Brams  ;)

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on September 04, 2012, 05:59:58 PM
My pain doc works off this:

Table 3 Proposed clinical diagnostic criteria for CRPS
General definition of the syndrome:
CRPS describes an array of painful conditions that are characterized by a continuing (spontaneous and/or evoked) regional pain that is
seemingly disproportionate in time or degree to the usual course of any known trauma or other lesion. The pain is regional (not in a specific
nerve territory or dermatome) and usually has a distal predominance of abnormal sensory, motor, sudomotor, vasomotor, and/or trophic
findings. The syndrome shows variable progression over time
To make the clinical diagnosis, the following criteria must be met:
1. Continuing pain, which is disproportionate to any inciting event
2. Must report at least one symptom in three of the four following categories:
Sensory: Reports of hyperesthesia and/or allodynia
Vasomotor: Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry
Sudomotor/Edema: Reports of edema and/or sweating changes and/or sweating asymmetry
Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes
(hair, nail, skin)
3. Must display at least one sign at time of evaluation in two or more of the following categories:
Sensory: Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or temperature sensation and/or deep somatic
pressure and/or joint movement)
Vasomotor: Evidence of temperature asymmetry (>1°C) and/or skin color changes and/or asymmetry
Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry
Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes
(hair, nail, skin)
4. There is no other diagnosis that better explains the signs and symptoms

CRPS is hard to diagnose but in honesty it is better to have it mooted and treated as if it exists in the short term whilst you start physio etc as what you definitely don't want is someone saying it ISN'T then changing their minds 12 months on. CRPS has a window of when it is most likely to respond to aggressive multimodal treatment - I don't mean aggressive in terms of physical aggression! Common thought is diagnosis and treatment within the first 6 months gives the best results.....which you are well inside. I too hope you don't have it, I keep convincing my brain I don't have it some 18 months on....sometimes I believe it for a while!  ;D  My pain doc said you don't need all of the sudomotor symptoms as those indicate vasomotor instability rather than direct CRPS pain response...I got a bit lost but he is a really lovely and experienced doc and he and my foot surgeon saved my foot I am sure by picking it up so rapidly and hitting it hard.(not literally....)

I am a bit baffled with the concept of an MUA testing if you have CRPS or not? How is he coming to that conclusion?! Movement is indeed key. You are doing the right thing by reading as much as you can and being aware of your body. You may already be doing this but can I suggest you keep a written record of how the knee is in terms of pain, colour, temp, hair growth, etc etc...it is really useful when you're explaining things and so much more evidence than relying on memory.

Good luck, I have fingers and kittie paws crossed it isn't CRPS!

Lottie
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 04, 2012, 10:58:03 PM
Thanks Lottie
What a great summary! If we went by that for diagnosis then I have CRPS but I am still hoping that pain Drs are right and that I don't. 
My OS says he will need to either break scar tissue up (MUA) or remove it (arthroscopy) at some stage.  He's hoping that CRPS (or whatever it is) dies down and we can do it in 7 weeks before the scar tissue has formed too much.  He is scared that if he does it too early the CRPS and the unbelievable pain I had will flare up again.  That worries me as well - I never want to go through that again!  If the pain doesn't go away then he will do arthroscopic surgery at a later time.

One thing that has helped me a lot is my thigh high compression stocking (for DVT). At first it was really painful to get on and caused a lot of pressure on the knee but now it makes a big difference.  Through the day my sensitivity, spasms and pain is fairly controlled but once I remove the stocking at night I feel every little touch/breeze. I've started wearing a tubey grip stocking over my knee at night to add a little pressure and protection and this makes a big difference.  I forgot last night and I spasmed about 10 times - everytime John rolled over and moved the doona over my leg. My knee ached all night and I had very little sleep.  I didn't know what was going on until I went to take the stocking of and realised it wasn't there! 

THanks for the tip of keeping a diary - must do that!

Kaddydee

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on September 05, 2012, 09:23:23 PM
Kaddy

Bizarrely I too use a tubigrip on my foot quite often. It seems to reduce the symptoms for me quite a lot if I am having a flare up, not sure why but who am I to wonder why. Thanks for the summary on your OS's thinking...I think that you will hopefully have got some gains with PT and can avoid the surgical invasion if at all possible.....saw your comments on the hydro situation too. How frustrating that places don't think about people getting to and into the actual pool. I will aloso again suggest the Epsom salts - buy some proper ones without perfume etc in them and have a soak in them if you can. They really calm things down and it might help with the gentle bending. I am also hoping that you don't CRPS too - fingers crossed!

Lottie xx
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 05, 2012, 10:09:39 PM
Epsom Salts is on the shopping list!!
Mum has looked up all the benefits and she is keen for me to try as well.
Not sure if I can soak in the bath yet but will try the sock/cloth trick.

Have a good day
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 06, 2012, 01:10:13 PM
I also use the Epsoms with the burning and it really helps. Sorry you had problems with that aspect of the hydro - the physios at mine were great helping us between the pool and changing rooms, but I can see how that all depends on the staff themselves.

OS's are rightly twitchy about surgery etc on a CRPS site, you definitely don't want that pain ramped any higher -once it's calmed a bit they have techniques pre- and post-surgery to try and minimise flaring things up.

Right, on that note, I'll leave you to Lottie's expert care... As on other threads! ;D

Good luck with the knee, will hope your symptoms ease up on you.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: katsinger on September 11, 2012, 08:25:22 PM
Hi! This is my first time to this site.  I have RSD in my right knee.  I was injured on the job back in 2009 and still can not work.  I am in constant pain and it seems to be getting worse.  I take 3600 mg of Neurontin per day just to be able to function.  My doctor told me that my knee cap sits off and really needs to be put back into place :P but he doesn't want to do this at this point b/c of the "catch 22 I'm in.  I have good days  :) & then really bad days  :-[.  I am not walking with a cane.  The worse thing for me is how a person who was very active can not enjoy life as I once did.  I am anxious to see if others out there are like I am, in pain almost 24/7.
Have a great day and I hope to be talking to you soon.
Katsinger  :)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 11, 2012, 09:24:32 PM
Katsinger.....hello and welcome!!! :D

I do understand the situation you're in, and I feel for you. It's so hard not to have the life you once did. How was your knee injured originally?

The decision of whether to operate or not is HUGELY complicated with CRPS. Most surgeons don't want to touch the affected area at all, and with good reason, as surgery to the CRPS site can make the condition worse all on its own, whether or not the surgery fixes whatever the surgeon was trying to fix! But it's hard when you just want to feel better - most folk have a knee issue, have some sort of operation, recover and then carry on. Some of the long-term KGs on here have found themselves stuck on a merry-go-round (and not a very merry one) of operations and recoveries and pain and problems that just don't get resolved. I think ours is a slightly different issue - in a way it almost doesn't matter what is going on inside the knee anymore, the surgeon won't operate until you pretty much can't walk... My kneecaps are wonky with arthritis underneath, but my surgeon told me I have to wait until I need a full TKR and then he'll do them and chuck the medical cabinet at the CRPS while he does the op!!

I too have good days and bad, don't walk with crutches, and take Lyrica to control my nerve pain to bearable levels. My CRPS started in my left knee after a simple arthroscopy to find patella femoral arthritis, but has now spread to the toes of my left foot and seems to be crackling up my thigh a little too often for me to shrug it off... I have found (from a fellow sufferer) that Epsom salts help to take the burning sting and redness out when it's bad. Make sure you have the unperfumed ones, wrap some in a damp tea-towel, and put it over the bad bits for a while. It's quite soothing and does help. Epsom salts works as a calcium channel blocker (or something like that, lol) to block the pain signals. Give it a go - you can get them off the Internet.

I'm in pain all the time. Most of the time it is background bearable levels that I am almost used to. In the evenings, especially if I've overdone things, it can become awful, with the fiery sensations that make it so miserable. Sometimes I'll just sit and sob. It is a nasty condition, with unexpected and fun other symptoms, and a cruel sense of timing!

It helps to know there are others out there feeling as crap at times. I hope your good days (and mine!) get a lot more common!!!

Take care and keep posting.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on September 11, 2012, 10:22:29 PM
Hi and welcome

Sorry you are also joining the RSD club. What treatments have been tried with you? Have you had the RSD ever since 2009 and the original injury? Neurontin doesn't always have such good effects on RSD - Pregabelin (Lyrica) is the drug of choice in the UK when its prescribed (costly for our NHS) as it works slightly differently on the gaba pathways and is showing slightly better results. Did they try anything like spinal blocks when you were initially diagnosed? Where in the world are you - having a proactive pain management team can be helpful especially if you feel things are worsening. The surgery is indeed a nasty option. Operating on any part of the body on a person with RSD brings the risk of it spreading but operating on the affected part is usually avoided unless its essential and if it is, they need to do all they can to try and prevent a further reaction of the system.

Epsoms are a good way to damp down the pain. I am convinced that using them every night on my foot has been of huge benefit. Losing the activity you loved is very hard. I guess I have been *lucky* in that my RSD has remained extremely localised and on my Lyrica I am extremely active. Mine came from a specific nerve injury when the dorsal nerve was severed in a foot operation. Perhaps having that defined type (is that Type 1, my memory fails me) has been easier to manage and contain, who knows. RSD seems to affect every one of us differently nd doctors are often pretty much dumb founded by what to do.

Please feel free to vent on here, we do get it. I hope you find some relief soon

Lottie
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 11, 2012, 10:52:26 PM
Hi Katsinger

Sorry to hear about your pain and problems with RSD.  It must be so hard, as you say, to go from super active to super limited b/c of pain. My heart goes out to you....
You've found a good spot here - great people with lots of ideas/suggestions and encouragement.  I'm only starting this journey and still hoping that I haven't got CRPS but things aren't looking too good.

While I'm here - has anyone experienced night spasms?  I've had them now for about 10 days.  I'm getting about 10-15 a night in my left upper thigh and knee (my bad side). They last about 5 seconds and then relax.  Last night was the worst as my knee seemed to tighten the most - that really hurts!  I really struggled getting out of bed this morning as my knee was so sore and couldn't handle any pressure. 

I saw my local Dr two days ago and was given10-20mg Endep (anti-depressant) to take at night.  I'm dozing a bit better with it but I haven't noticed any difference with the spasms.  Any ideas?
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 11, 2012, 11:53:52 PM
Hi Kaddydee,

I get spasms sometimes, usually in my quad muscle, not at night, but during the day. Not too often, usually if I unexpectedly put weight through my left knee, if I stumble or something. Sometimes it goes at other times for no reason, but I tend to be standing up. The speed it can twitch at never ceases to surprise me! It normally twitches for anything from 5 to about 30 seconds on and off. Weird feeling. Normally seems to start off an episode of heat and redness btw, be interested to know if you find that?

Mine has been very sore tonight like my soft joggers are rubbing the skin raw. I went out this afternoon and walked around a garden place with my mum, and it seemed to swell more while I made tea, that tightness seemed to trigger the extreme soreness thing.

It's a lark and no mistake!!! ;D

Take care everyone, hope you sleep well.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 13, 2012, 05:54:00 AM
Hey Brams,

I don't often get spasms through the day unless I don't have my compression stocking on - then I find touches to my thigh will set off a spasm (pulling up my pants etc).  I'm not sure what sets me off at night - sometimes trying to move position, sometimes the doona cover moving, sometimes getting a cold chill but other times seem very random. I don't get any heat or redness afterwards.

The tablets don't seem to be making a difference with the spasms.  They are making me sleep better ( a bit) but I'm still spasming just as much.

Hope you are feeling better today.  It's sad that doing something enjoyable can lead to so much pain!
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 13, 2012, 09:31:18 AM
You're so right!  ::) You'd think it would let us get away with just a little bit of enjoyment every now and then....

The spasms sound like we are having the same thing but just from very different reasons or stimuli. Weird. But then CRPS is known for every patient experiencing the damn think differently. Following on from your duvet comment, do you find that you are predominantly a hot or a cold person? I've always had cold hands and feet, had the odd chilblain episode maybe once in 3-5 years, but I find it's getting worse and I tend to wear a fleece most of the time, even through most of what I will laughingly call our 'summer' when my family were in t-shirts. I'm actually worried about the coming autumn and winter and thinking of looking for some really cosy slippers for wearing during the day.... 8)

I also find my hands are shaking sometimes, especially if I'm stressed or in a hurry. Tablets? (I take Lyrica) CRPS? Me being weird and unstable?  ;D

Ah the joys...

Take care everyone, hope you have a good day today and life is kind.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 19, 2012, 10:29:41 AM
Hi Brams,

I've been a 'cold' person lately.  It's been a really warm beginning to Spring here in Australia and I'm the only one wearing a jacket.  If I get too cold my leg tenses up, spasms and I feel like I'm almost going into shock.  I notice this most at Hydro.  Everyone else gets out of the pool and can happily walk around wet in their swim suits.  I get out and I freeze - lips chatter and leg spasms.  It gave the therapists a real shock last week so now they have the hot shower ready for me and towels put over my shoulders as I'm walking up the pool ramp.  It's a bit embarrassing getting all that attention but I need it. 

Usually I hate hot weather but I can't wait for it this year!  I feel sorry for you going into the cold weather - hope your house is warm one!

Ok, going to put the kids to bed and put my feet up - sigh of relief......

Have a good day

Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 19, 2012, 11:03:28 AM
Hi Kaddydee,

You made me smile wryly at the description of the hydro - I thought it was just me being a wimp!!! I had just the same thing, thought it was the abrupt change from the hot water to the cold, in fact I thought they kept the changing rooms too cold and it was a bit much considering ;D Oh dear, I do feel guilty now for thinking that! Thank goodness I didn't say anything!!! I ended up being draped in towels too as I came out too, they were very kind. I really envy you going there, my sessions ended ages ago, but it was the only time my leg really warmed up in the autumn/winter. I've got a heated blanket though, and I sit under that while I'm not doing stuff. Keeping the knee moving is vital, but I have to strike a balance between time upright and time resting it... ::)

I tend to be a cold person, my knee definitely so, although it burns up in the evening on bad days. Maybe that coldness thing is a CRPS thing? I wore a fleece through most of our so-called summer, even when my family were in t-shirts. My house isn't that warm, I'll keep the heating on low though and get some warm slippers and keep moving when I can. Hey ho. I could do with a warm office job!

hope you have a good day today. I'm cold even though we've got nice sunshine here - it dropped to about 7*C last night, proper autumn weather. Even thermal socks don't seem to keep my feet warm. Well, off to put the washing out, tidy up a bit, and then off to a singing group this afternoon. Haven't done it for over a year, so I hope my voice still cooperates!

Take care,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 20, 2012, 03:53:36 AM
Ha Ha! Maybe we are just both wimps!  ;D
I have enjoyed hydro - it's warm, I get my heart rate up and the knee doesn't hurt as much when trying to bend.  I find it soooo exhausting which is sad considering I was super fit 4 months ago.  At this stage it doesn't seem to have made a difference with my ability to bend my knee - still at 45 degrees- but hopefully over time I'll notice a difference.

As much as I enjoy hydro at this hospital pool it takes 2 and a half hours to get there, do the class and get home - twice a week. There is no way I can keep that up once my work starts up again.  I can go to my local pool but I think I would struggle with getting in and out of the pool.  We'll have to see what's happening in a few weeks time.

It's a beautiful Spring day here today.  I've been watching the lorikeets, cockatoos and top-knot pidgeons on all the bushes in our yard while I've been doing a uni assignment.  It's a lovely sight!

have a good day,

kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 20, 2012, 09:19:40 AM
Mind you - my CRPS didn't like the 'hot' bits of this summer either!!!! Can't win sometimes... ::) ;D in-betweeny weather is best I find, although it doesn't like the pressure changes of rain etc too! Lol, what a daft thing to try and deal with.

Two and a half hours to get to hydro is dedication :o That makes it pretty much a day out for just one session! I'm with you on the local pool thing - I chickened out as it wasa just too big and cold, and joined a small health club which has a nice little pool and jacuzzi (hmmm) and gym, beauty treatments place etc. and not too far to walk anywhere, lol. They keep the pool relatively warm (for the oldies I suspect!) so it feels nice when I get in.....have to take a towel though so I can wrap myself up when I get out....brrr!

Seems so strange to imagine you going into Spring now as we're heading for the cold bits. What kind of winter did you have? Do you get much in the way of minus temperatures?! Hope your spring and summer are nice, kind, gentle things....

I'm intrigued by the studying - I studied for a degree in Earth Sciences with the OU and graduated a few years ago. The very word 'assignment' just takes me back! It was wonderful and I really miss it. Every summer, I know the admissions are just around the corner and think about taking a course....but it's not cheap and funds are strained now, so I haven't so far. Hope you're enjoying yours.

Well, best get on today. We finally sold our second car yesterday, so I've got to get all it's documents together for the guy to pick it up at the weekend. Bless it, it was a great car, but I couldn't do the manual gears thing anymore, so we've got an automatic now. I hope it's going to a good home  8)

The dishwasher is quietly gurgling to itself, the cat and dog are both fed and asleep making little contended noises every now and then, and I am off out this afternoon with a friend for lunch and a possible (short ::)) shop. It's sooooooo quiet......just for a while.....

Have a great day and hope the knee is on good form!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on September 20, 2012, 05:36:59 PM
Hi everyone!

How are you doing ? Thought I would join your discussion.
Am fighting with the hairline fracture that I have on my tibia plateau. And that is the same leg as I have my RSD.
As I'm allergic to all nervpain meds I'm on morphine. So pain now with the fracture has been tough to deal with.
So we took another route and have made one cast that is removeable and I have also gotten 2 new braces.
I use them in different situations and that has made me more able to move then before with pain not pushing up to far.
My painlevels at rest is always around 6. Now with the break have touched 7. When I move around I'm an 8.
As I also have a partial spinal cord injury I'm in wheelchair 24/7. I have now lent another wheelchair with legrest for my left leg and that is also helpful.
Just some words how my life is now.

Nettan
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 20, 2012, 06:31:52 PM
Hi again Nettan!

Nice to see you on here. That fracture sounds horrible, and scary the jump in pain levels that it has caused. Must admit that I am proper scared about the pain levels should anything else happen to my knee. I know you can't live your life being scared in case something goes wrong, but the pain I've had just from minor bumps and scratches gives me enough of a clue that the CRPS really does ramp things up! Pesky thing.

Have you always been allergic to the nerve meds or has that happened gradually? Can't imagine being without mine now - if I forget to take one I really know it.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 20, 2012, 11:20:49 PM
Hi Nettan,

So sorry to hear about all your ongoing problems and pain.  RSD and your allergies really complicate things for you - not nice!
Looking at your knee history worries me - I started off with a partial meniscectomy and have had 4 operations and will need more.  It's crazy that something so simple can lead to so many problems!

Lottie - great to hear you are studying Personal Training.  You'll have a real understanding of clients with pain or chronic issues.  There's not enough personal trainers out there with that understanding.  Enjoy!

15 years ago I did a bachelor of music in piano performance.  Since then I have taught piano and run little children's music classes - I love it!!!  At the moment I'm doing my post grad diploma of early childhood education (a real mouthful!).  3 subjects to go!  I started the study to give me more knowledge in my other work but I may end up teaching if my knee continues to give me grief.  My kid's music classes are very active - I jump like a frog, run like a puppy, crawl like a caterpillar.  If I can't demonstrate it is very hard to run an effective classs.

I was also doing gym instructing before I hurt myself.  I don't think I will go back to that.  Thankfully, I have my music to depend on.  As long as I can play piano and sing I will be happy!

It's my big day today - physio and then hydro - and then I can rest and enjoy the weekend.
THinking of you all,

Kaddy
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 22, 2012, 06:50:54 AM
Hi Ho!

Another question for you all....
I've been reading about the 3/4 stages of CRPS.  Stage one has burning or aching pain, skin changes, spasms, rapid hair growth, skin sensitivty etc  I've got all of these things in varying degrees.

It says that this stage lasts for 1-3 months before moving on to stage two.  However some people remain in this stage.  I've also got the muscle atrophy and joint stiffness that can be found in other stages.

From your experience, have you stayed in stage 1, moved to other stages or didn't follow any stages at all?

I am a bit scared what will happen if I move to stage two......

The one thing that I'm holding on to is that my pain levels continue to be under control.  My knee aches but it is not bad - nothing like I experienced for the first 5 weeks.

One negative is both my phsio and hydro physio said yesterday that we won't get any bend back until I have a MUA or more surgery.  This is what I had thought but I was hoping that something amazing would happen and it would start moving by itself.  I am really starting to get worried about the pain that might happen after another procedure! :(

Still trying to stay strong...just having a bad couple of days.  Even chocolate is not working :)

Hope you are all having a better day.  Enjoy the weekend!
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: RLE on September 22, 2012, 07:41:48 AM
What kind of doctor diagnoses CRPS? Or is it the OS who does it?
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 22, 2012, 08:05:27 AM
Hi RLE,

In my case the OS said I had CRPS - he'd been inside my knee 4 times and said there was nothing mechanically wrong and could only explain the pain, stiffness and sensitivity as CRPS

My hospital pain DR disagreed - he thought there was something mechanically wrong.

My physios (3 different ones)  all suspected CRPS but aren't qualified to label it.

My local DR said she is not qualified enough to comment.

Does that answer your question?!?!?!?! 

I may have it, I may not.  Time will tell


Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 22, 2012, 10:17:42 AM
Ha Ha
I too have thick black hairs growing out of my knee - the rest of my legs are thin blonde hairs!  Very attractive!!

You're right - at this stage it is too hard to tell what is CRPS and what is repeated surgery.  Cramps are a wierd symptoms though...

Fashion parade sounds fun. Enjoy yourself and forget about all of this stuff

Spring has well and truly sprung - hottest day so far!

Better go do this uni assignment.  Grrrrr

Kaddy
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: zecrich on September 22, 2012, 10:23:02 AM
I am now 2.5 years post TKR and I have CRPS, it was my 13th knee surgery and I am in chronic pain 24/7 and use a wheelchair. I wish I had never had the TKR as I am so much worse, please please think it through very carefully
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on September 22, 2012, 10:32:50 AM
So sorry to hear of your pain Zechrich!  Sounds awful - it must be sooooo hard living with that constant pain.

CRPS can impact people's lives in such a negative way!  I've only lived like this for three months and I've had enough! 

I really don't want to have another procedure but my knee only bends from 15 degrees to 40 degrees and the physios can't get it to move at all.  I can't live like this......but I don't want to live with full blown CRPS either.  What can I do but hope for the best?!?!

This time I really am getting back to Uni....

Kaddy

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: zecrich on September 22, 2012, 11:10:55 AM
I get the CRPS pain and I also get a mechanical pain when I move my leg, yesterday I asked the doc about amputation as I think I might at least have a chance to fight back but he said no!

I agree it is very difficult living in constant pain and its made worse by having no sign of recovery, I spend 99% of my time laid up but when I do get a lower pain day, I make the most of it and with the help of family, I go kayaking, I only last about 30 minutes to an hour and I have to use outriggers to stabilise the kayak, after this my pain levels shoot up and I pay the price but its worth it, its good to feel alive even if its only for a short time.

I hope you find a way to get to uni, its very important to keep focused otherwise the fight is that much harder

Zec x


Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 22, 2012, 12:30:57 PM
Hi everyone,

Crumbs you lot have been busy! I've had two days from hell so haven't been about as much. It's a bugger sometimes this danged thing...

Hi Zecrich, good to have you posting on my thread - its so helpful to hear from others who have this in their knee. It's such a nasty condition to have, and knowing that someone else understands what you're experiencing is a real help. 13 knee ops sounds terrible anyway, to end that lot with a TKR that left you with CRPS is just, well, mean. Know what you mean about stuff that lakes you feel alive - just feeling part of life itself feels like a mountain climbed some days! I would massively read up on CRPS and amputation before even thinking about it. Amputation can make the pain worse, and cause the CRPS to spread. It does help for some peoplle, but the odds are not great, and it's a huge risk. I hope you have a better day today  :)

Hi RLE - my surgeon diagnosed CRPS about two months after he'd done my arthroscopy. On the two appointments after the op before that, he couldn't understand why I was still in so much pain from a 'simple look-around, tidy up and biopsies'... ::) When I saw him at two months my knee obligingly was stone cold and purple and looked like a piece of meat, and after a few pointed questions he was pretty darn definite. I then saw a physio (at hydro, lol, my land physio didn't know about it!!) who confirmed it, and my GP who confirmed it. I think it's normal for people to see several docs before its diagnosed, so I suppose I was lucky it was recognised quickly.

Hi Kaddydee! How are you? I understand from a lot of reading about that the so-called stages of CRPS are a bit flexible or ignorable to say the least, and most docs have abandoned the idea of them all together now. The important bit is to start treatment ASAP and not hang about for months. Whether you get that or not depends on your doc unfortunately, and some are more 'wait and see' than others. Good for you, going back to uni. I was talking to my husband last night about the fact that I needed a focus or I was going to go mad. I might start another OU course, maybe history or something - I've done nearly all the science ones!

On the subject of symptoms, yes I get the thick black hair thing too, especially right on the front of my affected knee. On the other hand, I've got less hair on it generally, including my shin. Not a good look! I used to epilate before my op, I daren't now!! I also increasingly am getting cramps and tightness in my leg muscles, so I do a lot of stretching to try and ease it. Doesn't seem to work in terms of the discomfort, but not doing them doesn't seem to be a good option either!

Since my long long day at the Paralympics a couple of weeks ago, my CRPS has been a lot worse and is definitely in flare mode. My whole foot swells and goes red now, and my knee is either icy cold or hot and red, nothing in between. I'm fed up generally and hacked off with the damn thing and wish I could have my old knee back!!! Not much point in that thought, but some days you just can't help it. I'm pretty cheerful about it all generally, but this is just relentless. I've got an appointment with a specialist pain physio who specialises in CRPS on Monday, and I'm really hoping that she has some good ideas and can give me some practical advice. My pain doc is so annoyingly blunt, just says things like 'well it's best not to think about the future' and (when she had confirmed it had spread to my foot and I said I was worried about it spreading elsewhere) 'it's not really helpful to think about that'. I mean WHAT?!!! And I don't know who else I was meant to mention my CRPS worries to!!

Lol, you have to laugh sometimes. I told her I couldn't wait to see someone who actually knew what CRPS was as my new GP (mine retired) and my land physio knew nothing of its existence at all! My GP actually got his book down and looked it up! Oh how rare and special we are.... ::) ;D

We have made Friday nights movie night in the house now, and have a list of what me and my husband consider classic (lol) films like Top Gun, etc. that we feel our children should see. Last night we all watched The Truman Show and our daughters really enjoyed it - my youngest, going up to bed afterwards, stuck her head back round the living room door and said 'good afternoon, good evening and good night!' ;D Bless.

Hope you all have a good day. The sun is shining after clear skies and it being flipping cold last night, so it looks very idyllic out there.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on September 22, 2012, 04:27:01 PM
I know foot crps isn't quite the same as knee and hope my waffles don't seem.too irrelevant or preachy. This things sucks what ever bit it attacks. Hugs to all body bits

Lottie. X
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 22, 2012, 05:26:21 PM
Not at all Lottie! CRPS is horrible anywhere, I think we all know that, and anybody's experiences and opinions are useful when you're fighting through the fog....

Yes this thread is aimed at the knee and CRPS unhappy union  ::) but it doesn't mean you can't post on it!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: RLE on September 22, 2012, 11:45:28 PM
Sorry, another question. Does CRPS move around or does it stay in one spot? I know it extends like from the knee up and/or down. But if it's on one spot on the knee can it go to the other side while the pain leaves the original site and that site is now without pain but the other side now hurts?
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on September 23, 2012, 12:09:03 AM
Wow. I'm not exactly sure on that one RLE. I have read quite a lot aout CRPS now, and i know that some people have pain that spreads and moves to another area - but ive not heard of it then leaving the original site pain-free. It can stay in one discrete area and never spread (isolated), it can spread to an adjacent area, ie from knee to foot like mine, or it can start up in the opposite joint (mirror type spread) - ie from left knee to right knee. Some people can end up with whole body CRPS, but that's pretty rare and is usually the poor folk who were diagnosed very late and didn't get treated early on.
As far as going from one spot on your knee to the other side of the same knee....that sounds weird! Is that a long-term thing, or within the space of a few days or hours? I've had patches that have strangely been unaffected during a particular episode - had a spot in the middle of my knee once that was completely normal, while the fire ranged all around it. Very peculiar. Be interested to hear other people's experiences on that!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on October 28, 2012, 06:24:27 AM
Hi guys,

What would I do without Knee Guru?  I've learnt so much over the last 5 months about meniscus tears, plicas, CRPS and arthrofibrosis (and lots more). 
Since I last posted, I've been told I have got arthrofibrosis - still only 20 degrees movt (25-40), fully stuck patella, very weak quads and the feeling that my knee is stuffed full of tissue.  The positives are that I'm limping with one crutch, driving again, sleeping pretty well, back doing music classes and feeling generally pretty happy.  Being off pain meds helps a lot.
I saw my OS on Monday and he's really scared to touch me.  He said I need at least a LOA (lysis of adhesions - arthroscopic surgery) but doesn't want to because he is so scared of how I will react.  So, I'm booked in for a MUA (manipulation) for mid Nov even though, last visit, he said he doesn't do MUA's after the 3 month post-surgery mark and this will be 4 months post surgery.  He did say that it will be an aggressive MUA and that I will be in hospital for at least three days and that the pain Drs will be ready for me. How comforting! 
After all my research I know that I need arthroscopic surgery (not an MUA) but if the Dr's not willing to risk it then I guess I have to try an MUA first.
Have any of you had AF and CRPS? How have you dealt with surgery? How did you stop the cycle of inflammation/pain and the excessive growing of lesions/tissue? 

I'd love your support on this one.  I'm feeling a bit overwhelmed by this!
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on October 28, 2012, 11:06:31 AM
Crumbs Kaddydee, sorry you've got AF on top of the darn CRPS... ??? As if one of them wasn't enough!

Good to hear you're generally feeling a bit perkier though, positive thinking and all that jazz... ;D

I chuckled whn you said about your OS being really scared to touch you - mine is just the same! He's said he won't go anywhere near my knees until they both have a TKR. Nice.

As I understand it, the aim for CRPS area surgery is to minimise the pain signals so that your already heightened pain network doesn't go into overdrive, also it is particularly important (both because of the CRPS and scar tissue growth) to be able to get the knee moving ASAP after the surgery - and if you're in too much pain you won't be able to. If a procedure is likely to cause serious pain to a normal person (lol) they might decide to use a nerve block in the thigh which stays in place for a few days afterwards, or an epidural before and after, both of which block all pain signals from the area. The downside is not being able to feel your leg/s for a while  :o There are other options too, but the main aim stays the same. The idea with CRPS, from what I've read and been told, is to have a pain management plan for the procedure - ie, what if anything they will do beforehand, handling the procedure itself, and how to control the pain in the first few days post-op, and then longer-term. You as the patient should ideally be involved and aware of what is going to happen. Personally, I don't think being told that the pain docs will be ready for you post-op is enough info!! It might be worth a phone call to your OS's secretary and asking for details of what they plan to do pre and/or post-op as you're concerned about it. If you're going to wake up with a nerve block in place, it would be nice to be prepared... :)

If you use this site's search box, there's at least one person who had major surgery with CRPS, they might have put some info on it. I think one I read about was a TKR, and from the little I remember I think it went ok pain-wise.

Try not to worry - if your OS is scared of the CRPS then he will be putting serious thought into even an MUA!! I'll be keeping my fingers crossed for you.

Well done on the music classes and everything else, it's good to do anything I think! I've started singing with a local choir again and it's lovely to just get out. If only I could find a job it would be even better! I'm seriously considering going back to a crutch as my knee is not so good at the moment and with the cold it seems to be even worse. I slipped on some stone flags last week and managed not to go over, but it shook me up and made me realise how precarious I am right now. The thought of a fall is NOT good!!

Take care of yourself,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on October 29, 2012, 04:25:02 AM
Hi Brams
Thanks for your ideas/support!
 I will see the OS again next week and he said that he will have a detailed plan for me - I'm assuming that will have pain control as a part of it.  I always seem to walk out of OS appointment with more questions than answers.  My OS gives the info so quickly I think I miss a lot of it and then have to go home and research!  I had one orthopedic resident in hospital who was excellent as she spent lots of time with me explaining every issue clearly.  If only they were all like her....
Had to let you know that I can now get out of the hydro pool without spasming or going into shock!  I knew I was getting better when the sensitivity to cold  didn't effect me.  I'm no longer a wimp!!!
So glad you are part of a choir - music does wonders for the soul.  The longer I'm injured the more I'm turning to music.  Unfortunately I can't play the piano yet because my knee can't bend under it but I am finding I'm singing more and even writing kids songs again.  I've got to find the positives in all of this!
I'm going to try a body pump (weights) class at the gym tonight.  I can't squat or lunge and I have a lot of difficulty getting down to the floor but I'm determined to give it a go.  I really miss my gym classes and my gym friends!
Have a good week,

Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on October 29, 2012, 01:29:02 PM
Kaddy

There is a KG member silver14 who also has AF and CRPS diagnosed this year. She has a thread in the AF section but I don't know how often she visits at the moment. If you want I can send her a facebook message as we hooked up on there. I hope Body Pump was good. Great to try these things - I bet you will feel fab having done it even if the leg work and the getting up and down is tricky. The whole social side is equally important. I am sorry you've been told you have AF too but it sounds like much of your CRPS might be improving - I also noticed you said you are not on pain meds, this is a big step with CRPS control so soon on. Good luck and keep us posted

Lottie  :)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on October 29, 2012, 04:18:45 PM
Hi Kaddydee,

Know what you mean about the questions thing, I usually end up sitting in the car park afterwards thinking of all the questions I should have asked.....grrrr! So frustrating! I always record my appointments now (just on my phone with an app) and go in with any questions on a bit of card. Mind you, even then something will come up and I don't get the chance to think it through until afterwards! :-[

I am so pleased that your body has got used to the hydro! I know that the reaction thing used to worry you, as it did me, so you must be stoked that the awful shaking and shivering thing is giving you a break now. Hurrah! Any tiny step up is so great... ;D I am hoping to start hydro privately soon, as i swear it was only the hydro that warmed my frozen knee at all during the winter months! I can't imagine not having it when everything is so cold outside....

I play the piano too! I have to stick my leg out to the side sometimes when things are bad, but playing does take my mind off it a bit... I'm lucky it is my left leg affected, so I can still use the sustain pedal! What sort of music do you play? I play mostly classical, but I'm hooked on some of the musical pieces at the moment, Andrew Lloyd Webber stuff, Phantom of the Opera etc. Fun but lightweight! I like playing Einaudi, and my daughter is hooked on his work - sometimes when one of us gets up off the piano, the other sits straight down! Otherwise, I play Debussy, Mozart etc. I hope you can play more again soon, it is,mad you say, good for the soul :)

How did your gym class go? It's great that you're doing that, I'm quite envious! I go to my gym, but haven't summoned the courage to do a class yet! If you're go well, I might try one... :o ;D

Take care in the meantime,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on October 31, 2012, 08:13:44 AM
Hey Brams and Lottie!
Since I last wrote everything has changed!  I am no longer having an MUA mid Nov but now having arthroscopic surgery to remove all the tissue/adhesions (LOA) and MUA.  It's been all a bit confusing because I'm working with 2 OS's.  My private OS works only one day a month at the public hospital so when he's not around I have to see another OS, who then reports to my private OS.  Last week I met with the public hospital OS and I really didn't feel confident with his idea of an MUA.  I emailed my private OS and he came back saying that an MUA wouldn't be effective and we need to do an LOA.  First though I need to come off my blood clot medicine - grrrr!  And then I need to get on the waiting list for surgery - hopefully not too long!
Lottie, I do feel fortunate that my CRPS pain hasn't continued.  My leg aches all the time and I get a lot of mechanical knee pain whenever I try to bend it but I can live with it.  I had weeks of not sleeping and feeling really anxious so I came of the pain meds and now I'm sleeping well and feeling really positive.  I'd rather put up with pain than feel tired and anxious.  Having said that, there was no way I could have lived without pain meds in the early weeks - I'm just lucky that that pain didn't linger too long.
Brams, I grew up as a classical pianist - even did piano performance at University.  I loved the Romantic music - Brahms, chopin etc.  Since having kids I don't have time for hours of practice so I tend to play more popular music - lots of wedding music/background music.  My favourite thing to do is to sit down and improvise - everyone can tell how I'm feeling by the music I'm playing!  My daughters love Taylor Swift so I'm teaching them how to play that at the moment - all a bit of fun!

My Pump class was great! I didn't squat or lunge, I needed help from 2 people to set up but I worked my arms, talked to lots of people and sang along to the loud music - it was good to be back!!!
OK, better go...time to put kids to bed.  Always a nice time of day.
K
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on October 31, 2012, 01:44:59 PM
Hi Kaddydee!

Lovely to hear you sounding so happy  :) I'm glad you have a clear plan now and are happy with it, that's worth gold all by itself! Am wowed that you are a classical pianist with performance experience :o I shall keep very quiet about my lowly standards, lol - I've never even done any grades, but was assessed at school as Grade 4 so I hope I'm about grade 5 or 6 now! I think playing helps to keep your brain a bit sharper and away from the CRPS fog, it definitely helps me feel brighter too, if only it could take the pain too!

I know what you mean about the pain meds, I find it bad enough taking the Lyrica and amitriptyline for the nerve pains, if I added in pain meds I'd be a regular zombie - ok for today, lol but not long-term... 8) I had my wheelchair assessment today, and I said to the therapist that I'd rather be me in pain, than a drugged up zombie in less pain but able to do less in terms of actual living. I've finally got my voucher and green light, so I'm going to the stockist to order it this afternoon - I'm quite excited!

I'm glad your gym class went well, I promise I'll have a look at the board at mine and have a go at something... ;) I'm off for my concert tonight - we're singing Mozart's Ave Verum Corpus, the Sanctus, Nella Fantasia, And The Glory of the Lord, and then a choral arrangement of Fix You by Coldplay! Bizarre, but it's actually very nice to sing and sounds amazing. Bless him, our choirmaster is very Gareth Malone-y, young, dark haired, easy on the eye  ;) and very enthusiastic and passionate abut his music - he sings professionally in a quartet all over Europe, so I think we're very lucky really. I'm nervous but excited too. Wish the ami didn't make my mouth so dry! I have to keep a bottle under my chair...

Anyhoo, take care of yourself and keep up the good news. I like  :)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on November 03, 2012, 04:59:09 AM
Hi Brams,

How did your concert go?  It sounded like a great programme.  If my knee doesn't get any better I think I'll join a choir too.  The last time I sang in a choir was when I was at Uni, 14 years ago.  Since then I've lived in a small country town with no choir, had kids and then discovered I loved exercising and doing adventure races.  If I can't spend hours exercising then a choir would be where I'd choose to spend my time. I don't know if I've said this before but one reason I've stayed so positive through all of this is because I know I have my first love, music, to return to.  

That's exciting news about the wheelchair.  What sort are you getting?  I'd love to have one so that I could go on family walks and bike rides - that's what I've missed most over the last 5 months!  We have a great foot path at the back of our house that runs along a creek and is really bushy.  It was so nice on weekends to walk along the path and see the different birds and get some fresh air.  It's very hard to get that same experience if you can't walk or ride.  I'll see what happens over the coming weeks and it might be something that I look at in the future.  Time will tell....


Hope you are enjoying your weekend.  
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 03, 2012, 10:41:44 AM
Hi Kaddydee,

Oh my word, get one! I've used my wheelchair twice now and I love it. Yesterday I actually went shopping with my family for some outdoor gear for my husband and daughter who are really into their rowing (but dont want to freeze on cold mornings like today  :o) We went to a huge store that I just wouldn't go near these days, and I browsed for the first time in ages! Could go off by myself to look at things, didn't have to look for seats etc...it was great. There are so many things that I've just stopped doing - shopping trips, walks to just look at the world  ::), going into town to look around shops etc, not to mention the stuff I still can't do like the sports I loved  :( Oh well, you just have to find new things, I know... ;)

When I had my assessment, I had a long chat with the therapist about the whole wheelchair psychology issue (I may have mentioned it before, lol). She said everyone goes through it, feels like a fake, doesn't want to be seen as 'disabled', worries about people's reactions, etc... She said people who know you will get used to it very quickly and just see you as you still, and who cares what strangers think! I thought that was very wise. Anyway, having gone out twice in it (to fairly anonymous places to start with, my high street has to wait until I have more confidence in it on wonky pavements!) I would say don't wait. I've wasted a year when I could have been doing things that ultimately make me feel normal and like myself again. Yesterday, I almost kind of forgot about how I was getting around, it was just so nice to do it!! :) Just don't get a cheap chair off the Internet like I did initially - disaster. Cheap, heavy, badly made, off balance. Put me off the whole idea again for a couple of weeks.

I got a voucher towards my chair from the NHS, after going for a wheelchair assessment, then I ordered one from a supplier in a big mobility store. I got a low to mid range model, a basic chair, but the frame is aluminium instead of steel, so it's a bit lighter. It's still a bit of a heft to get into the boot, but I can do it by myself if I have to, and the wheels pop off to make it lighter as well. Mine is currently in the boot of the car, which is with my husband at rowing  ::) so I'm not sure of the make and model!! I'll let you know...

The choir performance was great. I thought we sounded amazing at some points - not all, mind! but we do have quite a lot of kids involved, and some are like deer in headlights when we perform, bless. It's such a rush to perform, not like the adrenaline rush I got from my tennis etc, but a decent proxy... I highly recommend it. I did suffer a bit through the performance as we were meant to stand through it all, but our choirmaster knows of my problem and he is fine for me to sit down if I have to, as long as I don't change my mind half way through a piece! I think as long as you are upfront and don't pretend to be 'normal' lol ;D most people are very accommodating. I stood for more pieces than we had planned, just because I wanted to. I paid the price that night and the next day, but it was worth it, and the applause was better than a painkiller!

Later today I'm going to do my first supermarket shop in a while with my husband in a big place where I'm more likely to meet someone I know... :o  8) Looking forward to it as well, how sad is that?! I'm sure the novelty of food shopping will wear off again, lol. Then tomorrow the family is coming here for a big roast tea, which is always rowdy and lovely and cosy :)

Have a lovely weekend, and I hope the knee behaves itself! Mine have been rubbish recently and the CRPS has been flaring regularly, but I'm hoping it'll calm down now. I'm off to see what my youngest is up to in her room (lots of banging!) and then the joy of laundry and tidying. Oh the fun and games!

Take care and enjoy the sun of you have some!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: piglet46 on November 06, 2012, 05:48:34 AM
Ideveloped RSD after my second medial femoral condyle bone graft in Sept 2012. I am 7 weeks post surgery ( left knee AVN diagnosis 2008 , this is 5th surgery to correct AVN) and my shin is numb and my foot feels like a block of ice. Have been told it"should" get better once I can start bearing weight, but no idea when that will be. Previous allograft died due to bone failure to re-vascularize. The surgeon has no idea if this autograft will be successful .
Anyone else had simiilar problems? Would love to know how others proceeded next
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 06, 2012, 09:26:56 AM
Crumbs piglet46, sorry you've got RSD/CRPS now following your bone-graft  :( that's not nice on top of dealing with a 'normal' recovery too. Hope you're feeling ok today and it's not hurting you too much - I know the cold icy sensations hurt anyway... I don't have any more than sketchy knowledge about bone-grafts, but I know they can fail. You must have everything crossed that this works, I'll hope for a good outcome for you!

CRPS 'can' indeed resolve if recognised and treated quickly, as yours is hopefully being, but it's a tricky customer and sometimes you can do everything right and still have a fight with it... It's really important to keep the joint moving, with the aid of stronger painkillers if necessary. Whatever allows you to do the physio  ::) Must be a nightmare being non-wb for now, but even gentle movements make a difference. Just don't let your knee be still for long periods of time, as CRPS doesn't like that - It does seem harsh sometimes when all you want is to rest it!!

Are you on any medication since your diagnosis? Amitriptyline, pregabelin or Gabapentin (lyrica) are all typical ones as they are used to treat the nerve-pain, sometimes with pain meds on top if needed. When my knee or foot (or both) go icy-blue, I have a little warm pad that I put on, alternating if they're both playing, lol. It helps with the worst of the cold, which seems to help the deep pain. When they're red and hot, Epsom salts are the thing - you can get them online (unfragranced) fairly easily. They work as calcium channel blockers, or something like that  ;D and ease the pain as well as cooling things down. Magic stuff! I cut out the back of one of my kids' t-shirts, damp it with cold water and lay a 2-inch-wide line of the salts along the middle, then fold the cloth up in fish'n'chips style, lol, and lay it on my knee. A damp sock with the stuff in works for the foot. Ah, the glamours of CRPS!! 8)

I guess you're just in a waiting game now as far as the graft goes, and time does drag ::) What stuff are you doing to pass the time? Good old tv, movies, music, computer, games, crafts, reading? Wild parties?! Hope you can keep occupied, I know sitting being bored did zero for my mood! I'm thinking of starting a uni course (from home of course, lol) to keep my brain from seeping out through my ears.... :o

Take care of yourself and I hope things improve quickly for you, let us know how you get on.

Brams  ;)

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on November 06, 2012, 02:24:09 PM
Welcome piglet

Sorry you have to join the RSD club. Brams gives sage advice, and yes it can indeed resolve or improve if its caught early and things can be arrested.....but it does have a way of being SO different in every single person it is hard to know what might happen. As Brams says - activity is vital as much as you can manage. I have it my big toe, the joint and other 3 toes and sometimes in my forefoot. If you can. try and work the toes on that foot. Mine got worse when I held my foot so still and stiff. Can you do ankle pumps? Ankle rotations? Can you try and squeeze your toes onto something on the floor even if not weight bearing? e.g.a small ball. Can you tie a little theraband around the toes and try and flex and bend them against it? I had to do that 100 times, 3 times a day as my big toe had solidified at the top joint. It hurt like heck but it now moves freely.

Good luck with the graft. Waiting is horrible and dealing with RSD on top of the AVN seems very unfair. Keep us posted

Lottie  :)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: helencatherine on November 07, 2012, 11:01:29 PM
Hey! Well, seems like I'm now in the CRPS club after pain management clinic diagnosed it on the 1st Nov2012.

I had major reconstructive surgery back in April 2012, TTO, MPFL Recon & ARTHROSCOPY.  Initially I had all the usual symptoms of recovering from extensive surgery, pain, mobility issues, range of movement etc but it's never gotten better.  I was recently referred to a specialist at the pain management clinic after describing a deep burning, itchy, hot then cold leg, purple blue and orange spotted skin, sometimes it just looked pale, other times it looked and felt like it was on fire plus stiffness, inability to do my physio and a whole host of other issues, all in all at it's worst, my leg feels it's in some torture device from a Saw movie that's being crushed and burnt lol.  Now I don't know much about CRPS, I don't even know what type. I have, I'm assuming since it's been there 6 months it's possibly type 2.  I need to vent.  I'm trying to build my leg strength back up after surgery, but how on earth can I do that when I'm so heavily medicated and still sore?!?!? ARGH!  I'm currently on ametryptaline, Dihydracodeine, diazepam, ibuprofen, paracetamol. That's all I think lol!! It currently amounts to 5335mg per 24 hours? Yet I'm still in agony!!! Ugh!!

Time for sticky toffee pudding and some netflix, sod this agony lol
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 08, 2012, 12:02:58 AM
Well hello helenkatherine, sorry you've joined the club, of you know what I mean...  :)

Hope you're feeling a little better right now, and the knee of doom is giving you a bit of a break.

Your symptoms are just sooo familiar  ::) I can completely relate to them. As far as what type you have, I wouldn't get too concerned. It's just that Type 1 is where they know it began after a definite injury to a major nerve, Type 2 is where they don't know exactly what set it off. Both result in the same symptoms and are treated the same!

CRPS is a funny one. The docs aren't really sure how it starts, why, what mechanisms within the body keep it going, or how to treat it. There are drugs that can work well against the nerve pain, but equally there are cases where they dont know how to... The best place to go for info is a good CRPS website that gives the facts about it without scaring you rigid  :o ::) with nasty pics of extreme cases, etc. Read up on several different ones and get your own balanced view of it... Six months in is sort of thought of as being past the earlier stage where some cases resolve spontaneously, but you shouldn't give up hope. I'm 14 months in myself, and that window has definitely closed!

Building up strength through physio exercises that hurt like hell? Yep, still there, feel that pain, and in that same boat. Not good. I do know that CRPS hates inactivity, and movement of the affected part is crucial to stave off a worsening of symptoms. Even if I can't bear to do the exercises, or am just feeling zonked and tired and weepy, I still try to keep moving about regularly, wiggle my feet to keep the blood moving, etc. Try not to sit still for long periods....sorry if this is obvious stuff!!

If you feel things aren't right with your meds then see your doc and ask them to review it, or at lest explain their reasoning behind it. I'm fighting the pain ones as they make me so tired that I can't function properly, and being a zombie is not an option with kids! But...the pain itself is wearing me out, and I'm not sleeping well, so I have to balance it all somehow. There's no denying that it's complicated, and that you can't rely on your docs to get it 'right'. You need to read up on this thing and be aware of what your tablets are trying to achieve, it does help a bit with getting your head around it! Don't be afraid to suggest things, in my (limited) experience, a lot of docs just don't know what it is, let alone how to treat it, and they look the damn thing up in a book! ::) Take an active part in your treatment, and make sure they are constantly looking for ways to help you more. Have you got a 'team' treating you? ie your GP, a pain management specialist, a physio, psychologist, etc? It's good to ask what they think of the others' ideas, you can get new ideas from them if you're lucky, lol.

Sticky toffee pudding and Netflix sounds like a plan. Add vino to that and you have a potentially winning combination... ;D Laughter, conversation and good food are still the best painkillers I've found so far - sitting on my own makes everything worse, shame I get a bit too much of that during the day while everyone's at work and school!! I would dearly love to work again, but don't know if anyone would employ me now ???

What else do you enjoy? Any major hobbies?! Can you still work? I play the piano and cello, and have a little kitten who amuses me no end, plus I have LoveFilm through my TV  ;) Try not to watch too much though - the brain rot is bad enough anyway!

Take care of yourself, and vent away on here. When someone else says things that I can relate to, it makes me feel less alone and less 'different'...so thanks!

Let me know how you get on,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on November 08, 2012, 08:18:54 AM
Hi Helen

I remember your diary - you're in Scotland and make those fab cupcakes don't you?! I am sorry you're joining the club. For a rare complication we sure seem quite good at developing it.  ::) I won't jump in too much as my RSD isn't in the knee and hence my problems were different,  but I would say that to push your pain team for a) a decent medication review - apart from the ami none of those meds will do much for CRPS and general thought is that you need something to work on the GABA pathways to reduce the burning sensations and allow the nerves to reboot hence why Brams and I have both been put onto Pregabelin (Lyrica). Ami *can* help but it has different neural pathways and probably needs something else in the mix. NHS pathways seem to try ami first then additional things but you may need to push for a decent regime as Brams said. No one likes drugs but with CRPS the whole aim is to dampen down the system and try and restore some normality. Secondly can you try and see a physio who understands CRPS. Normal protocols go out of the window with it. Pain levels need to be established and there is a clear window of how and what to do with it plus all sorts of different things that they can try and help with. Not sure what they've said regarding ice but with CRPS NEVER ice your leg. It is very bad for the nerves and can create further issues. Have you been checked that your bone healing is all done now?

Vent away on here. This is a challenging, frustrating and downright painful condition. Sticky toffee pudding works well though, and you're in safe hands with the other knee CRPS-ers on here.  8)

Take care

Lottie x
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 08, 2012, 10:29:16 AM
Hi Lottie, you're so vigilant on here and you know everyone!  :o Thanks for going over my advice so quickly as usual and mentioning a couple of things I hadn't - although in my defence, I had only finished for the day cos I got tired (rough day, lol), and was coming back this morning.... I would still advise Helen to research the condition herself, as I think we would be the first to admit that we're not experts ourselves (though we know more than some doctors and physios... ::)) and can only base our views on ourselves - and we don't know everything about it either!! You never know who might find something new that will benefit us all....fingers crossed!  ;D

Hope everyone is having a better day and getting out and about. I've off to see my physio later - I have to tell him that long mirrors of the type one needs to view a whole leg and might have at home are bloody awkward to manoeuvre!!! I've ordered one that I hope will be lighter, and that I can keep in my room and not have to retrieve from someone else's, lol - mine are stuck to the wardrobes! ;D Lookimg forward to maybe doing some exercises and getting more ideas....

Take care Helen and everyone else,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: RSDFighter on November 14, 2012, 07:15:37 AM
These are 2 things I've posted on other forums and some people have said theyv'e helped

http://www.openfocustraining.co.uk/exercise.html

http://www.paintoolkit.org/assets/downloads/Pain-Toolkit-Booklet-Nov-2012.pdf



Please read my post Worldwide Awareness Campaign
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 14, 2012, 09:16:30 AM
Thanks RSDfighter, will have a look  :)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 14, 2012, 06:33:08 PM
Hi! How is everyone doing today? I've been out and about with my crutches, and my leg is doing the cold icy fire bone pain thing now  :-\ It was great to get out though, had a coffee with my mum and a piece of cake  8) ahh, happy times!!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on November 19, 2012, 09:13:49 AM
Hi CRPS friends,

It's been a little while....
Just letting you know that my LOA/manipulation is on Friday morning.  I've been trying hard not to think about what can go wrong but this week I'm freaking out.  I need this surgery as I still have only 20 degree movt in my knee but the OS's are scared about how I'm going to react with CRPS.  I am too!  I have bought and wrapped all my Christmas presents, fully prepared for my daughter's birthday party in mid Dec and frozen lots of meals just in case I spend another month in hospital with severe pain.  I am prepared for the worst but hoping for the best.

The plan is that I will spend at least three nights in hospital.  I will spend a lot of time on the CPM machine, a lot of time icing and a lot of time with my foot elevated.  It's the unknown which worries me the most.  So many questions that no-one can give me answers to.  The surgeon said that we are taking a gamble and no-one can predict the outcome.  They don't know what they will find in surgery and they have no idea how I will react afterwards.  That's scary!  CRPS and arthrofibrosis just don't mix!!!!

Even though I am freaking out a bit I am still pretty positive about everything else in life.  Sometimes I just have to laugh at all that's gone on this year - especially last week when one daughter needed surgery for a badly broken wrist, another daughter had the vomiting bug and my husband side-swiped a car.  All we could do was laugh - crazy but true!


I hope you are all doing OK.  Keep doing the things that you love and keep finding some normality in all the frustration and pain of CRPS.  I'll keep you updated - hopefully, it's all really boring!

Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 19, 2012, 12:17:09 PM
Hi Kaddydee,

I can understand your worries about the LOA and MUA - I'd be freaking out as well! I am a bit worried that they're talking about icing afterwards though - I know the surgery and MUA will cause swelling, but ice and CRPS are generally acknowledged to be a bad idea. Not saying I know what's best, lol, just that in everything I've read about CRPS recently, they say not to ice as the vasomotor system in the affected area is already functioning poorly, and icing could just make that worse. Please just talk to your docs about it first if you haven't already!

Must be horrible to be preparing for such a rough time, I really hope you get the best of the scenarios and can come home after the three days without too much pain. Pain is so scary, but on the other hand you're already having a lot of pain and with minimal ROM....sometimes the risk has to be taken I suppose. No one can decide except you :-\ Caught between a rock and a hard place, us CRPS gals. 'Taking a risk' is a scary thing anyway, without the CRPS thing to dance around.

Will you be able to update from the hospital or wait until you get home? I'll keep my fingers crossed on Friday for you and hope to hear good news soon after.

Can't believe your last week! You poor thing, you must have been frantic with worry about them all! I hope the family are much improved now after everything, and you feel able to trust them to themselves while you're away! How is your daughter's broken wrist? Sounds nasty. And those vomiting bugs are horrible, they really wear you out - I'm glad you didnt get it as well. Is your husband (and car!) ok after his scrape? Crumbs, you'd be shocked if all that happened in a year, let alone a week!

Fingers crossed for that boringly average and dull post-surgery update Kaddydee... 8) Postive thoughts all the way!!

Hope your week beforehand is uneventful and easy on your mind and body :)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on November 19, 2012, 09:47:13 PM
Kaddy,

Good luck on Friday! I have to say that I fully echo Brams and the icing concern. Ice and CRPS are SEVERELY contraindicated. Ice on a CRPS affected limb can cause serious damage and spread. Check out the RSD sites for some more in depth arguments about this but Brams says it in a nutshell.

http://www.rsdhope.org/ice-and-crps.html

However swollen my foot ever gets ice is a no no for it now - in fact I probably would not use ice even on another injury such as a sprain for fear of it setting off a CRPS reaction. I know you've made a great recovery from the initial CRPS pain etc but really, ice should not be on the list. :-( Cool flannels perhaps, but not ice. Oh goodness I am sounding like a broken record! Sorry for chiming in, but you might need to educate your post op team about this - it seems we as patients are often better informed about the nuances of CRPS than some doctors.  ::)  I don't want to add to your pre op stress at all, but I had to comment!

Sorry about your daughter! It never rains etc........hope the family are settling down! I am sure you'll be back at Body Pump with a more bendy knee before you know it. Keep fighting and keep smiling

Lottie xx
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on November 20, 2012, 02:24:53 AM
Thanks (as always) Brams and Lottie!

The plan is to 'try' CPM, ice and elevate for arthrofibrosis but last time I couldn't do any of these because of the pain so I'm expecting the same this time.  I think we (the surgeons and me) are hoping that CRPS won't rear it's ugly head and we can have a "normal person's plan" but we are very aware that it could all change within a day or so.  I've talked on here about the spasms and pain that I got from ice/cold last time but I hadn't realised that it could cause damage/make it worse - looks like I have more reading to do....I've really struggled with inflamation/hot knee (and still am struggling).  If  I don't ice and my knee is inflamed then the scar tissue will grow quickly again.  How can you control that without ice? Any ideas.

Honestly, I don't think anyone really knows what to do for me.  We are just giving it a go and we'll adapt as we go.  I really hate the unknowns!

Brams, I will have my little laptop with me in hospital so I will update.
My daughter is fine - she had more X-rays at the end of the week and all the bones look to be lining up correctly so now she just has to put up with the big full arm cast in this hot weather (and no swimming).
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 20, 2012, 09:35:50 AM
Hi Kaddy,

Just a quick one before I dash ((hollow laugh)) off to get some stuff done....

Ice is definitely not the way to approach CRPS, and there's a lot of evidence and studies to back that up. Having said that, it's up to your surgical team what they think is best - BUT only if one of them is a CRPS expert and aware of the ice thing!!!

To reduce swelling without ice, I elevate my foot/knee and use a cold flannel, refreshing it every 10-15 minutes to keep it cool. If its on a non-open wound, you can use Epsom salts wrapped in a damp cloth. They work better because of the epsoms doing their calcium channel-blocker thing to stop some of the pain signals. Having said that, my knee is ALWAYS swollen to some degree because of the CRPS.... In terms of stopping scar tissue growth, then in between cooling sessions, you need to keep your ROM going as much as you can. It'll be hard work, but worth it. If your knee sits still for periods of time then you risk losing some movement. It's going to be a tricky balancing act after the initial post-op period but should be possible.

I really feel for you here Kaddy, when you said about no-one there really not knowing what to do....not what you want to hear  ??? You'll have to make sure that YOU are the one with the information, knowledge and ideas pre-op, and that your team listen to you before and afterwards, so that no random nurse packs your knee in ice for an hour because that's just normal protocol... Make sure your partner, friend or whoever is going to be there afterwards knows the plan and the issues as well, so that you can get some R&R and not be anxious. If the team aren't sure, you really need to take that seriously and be strong with them beforehand - CRPS and surgery are a tricky combo.

Oh dear, sorry! Lecture over!  ::) Don't want to make you more anxious.

Glad your daughter is ok and her wrist healing well, must be a relief. Tell her no skateboarding or horse-riding while you're recuperating!! Glad you will be able to post from hospital once you are over the initial post-op stuff, I'll be crossing my fingers and wishing you a good experience. Healing thoughts and all that jazz  8) I shall get out my crystals and whale music......

Now don't forget to pack a couple of lovely nighties for the nice doctor-man. You dont want the ship-issue ones :o No crinoline or high necklines tho ok?

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on November 20, 2012, 07:37:33 PM
Kaddy

Read through the AF tutorial on here by Noyes, it is excellent. It doesn't say about the CRPS but it is very definitive about AF rehab. Also, you might want to ask a question or start a thread down in the AF section as some of the experienced AF success stories don't always check out these threads. Pam, Renn, etc all have great advice on complex rehabs.  :)

Good luck for Friday, keep us posted

Lottie x
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on November 23, 2012, 07:37:32 AM
Hi guys

Well, so far so good!  I haven't talked to the OS but all they did was a manipulation.  Apparently, there were some huge 'cracks' to get it moving but after cracking they moved my knee from 5-140.
I woke up with heaps of pain but managed to get that under control with morphine within half an hour.
I am now on the CPM machine and just got to 90 degrees - unbelievable!!  Last time the CPM machine gave me soooooo much pain so I'm really happy that it's moving with only a small amount of pain.  A great start!

I'm going to keep the machine on until 10pm ( 6 hours) and then sleep for 4-6 hours with my foot elevated and then start it up again tomorrow.

For me, the big test will be in a day and a half - that's when the severe pain usually kicks in.  I'm really hoping that it won't this time because I didn't have arthroscopic surgery.  We'll see.

The only negative is that I've been vomiting.  This is strange because I haven't reacted this way to anaesthetic before and I was only asleep for 15 minutes.  Oh well, if that's the worst of it I can handle it

And just to let you know.....the nurse asked if I wanted ice and I said NO! 

That's it for now.  I'm going to have another snooze.

Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 23, 2012, 07:55:05 AM
Yay!!!  ;D

Great news Kaddy, I'm so glad things went well and you aren't in top much pain. And well done on the ice refusal!! I'll keep fingers crossed that your pain doesn't kick.in too much - must be a positive sign that you are feeling good now, hang on to that!

Will hope the good news continues...well done so far  :)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on November 23, 2012, 01:58:35 PM
Kaddy, all the best to you !!

Brams and Lottie, thanks for being there for my friend Malin! :)

I apologize for writing but never get back on here.
So much going on in life now.
My break I had in my left knee, my CRPS knee, is not healed yet. 8 days ago my other knee, the right one got stucked when I sat in my wheelchair in the kitchen, then a loud sound like pistol shot when I finally got it to move. Swelled up so in to ER and took out fluid.
The last of my lateral meniscus crunched and I also have a lot of cartilage damages in there.
I am moving to a new apartment in February, so until then we will try just phys and after that surgery.
So much fun...NOT !
I really don't know right now which knee to baby or not.

I hope the rest of you are doing as well as you can...will try to pop in more often from now on and also read up on what everyone is up to.

/Nettan
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 23, 2012, 02:24:43 PM
Welcome back Nettan  ;D good to hear from you again, don't apologize for being elsewhere!!

Can't believe your bad luck with your poor knees. Sounds so painful especially the 'pistol shot' sound, eww :-X, and after last night I can totally sympathise with the 'which knee to put my weight through' panic - I was getting up from the sofa and had terrible pain through my (ha) 'good' knee and fell back. It did ease after a while, but it does make you think what you would do if that knee went as well! I hope you can still get about ok and you aren't in too much pain. Good luck with the physio work, all fingers are crossed. How is your CRPS knee holding up with the break? How is the pain?

What's your new apartment like? Hope it's a move you're excited about, even if you have to negotiate every thing around your knees  ::) Not fair, is it?!

Have a good day and a better tomorrow :)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on November 24, 2012, 04:37:39 AM
Oh Nettan and Brams, look after yourselves!  It's no good to hear about your good knees playing up - I couldn't imagine having 2 bad knees.

My daily update......I had a great night's sleep from 10-5am with leg elevated.  I love being sleepy with GA!
I woke up this morning with more pain, had an endone and started slowly on the CPM machine. It was was pretty stiff and sore so it took almost two hours to get back to 90 degrees but I made it.  I then saw the physio and went for a little walk with crutches - this was quite painful and I couldn't get my heel down as my leg was at a 30 degree bend but it was nice to be up and about.

I then tackled the CPM machine again and got to 95 degrees and stayed with that for a couple of hours.  This was with 2 endones.

So, I just got up for a toilet break and walk and my leg is getting really sore - GA is wearing off.  My leg is bending up again when I walk (like it did  in previous ops) and my knee is very swollen (double the size)and hot.  I'm staying positive but am aware that this is how I felt after the last procedures. 


I'm going to put a cold flannel on now and keep my leg extended for a while.  I've been given 2 more endones so I will probably have a snooze as well.

Lottie, I have read the Noyes information a few times and regularly read AF posts on here.  I will try and post on the AF site later to let people know my progress but also get some advice.

Have a good weekend
Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 24, 2012, 09:12:53 AM
Hi Kaddy,

Hope that pain has come down a bit by now and that poor knee is cooling down. I can imagine your worry with the GA wearing off and stiffness, pain, swelling and heat coming in.....but try not to stress if you can (although you sound pretty calm normally  :)) I know you'll know this but I can't help myself Kaddy  ;D - please make them keep on top of that pain level, and give you a bowl of cold water so you can refresh that flannel (well wrung out, of course!) when you need to....

I can't cross any more bits of me and still get on with anything, lol, but I'm willing this to go gently on you, and that you get home soon with minimal pain. Must be horrible not really knowing how things are going to pan out there day by day - we all know any surgery carries problems, but adding CRPS on top (and the AF) just chucks all the toys out of the pram. You're so strong though Kaddy, and you've got your wits abut you even with a GA! I have lots of faith... 8)

Take care of yourself, and well done on the sleep - 7 hours with hospital noises and chaos is pretty darn good!!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on November 24, 2012, 03:07:21 PM
Hi Brams and Kaddy!

Brams, my crps knee is a mess also, but pain is though better then it was after the break. I can do more while sitting in my wheelchair before I need to have a break and put it up to elevate. I have brace on 24/7 almost. Just take it off sometimes when elevating. Also sleep with in on or I awake in pain and have more swelling. I know I need surgery on this one also. But has to wait until the break is healed and the other my right knee is more urgent.
My right knee get stucked now and then, so I have to be careful in how I get around and how I sit.

Brams, I can really relate to this having problems in getting up and just think of what's going on. Hope it does ease and is not more problems.

The apartment is what I have wanted. In middle of downtown. So I am so very happy. I will move in 1st of February. It's 2 room and a kitchen and bog bathroom. All will be rebuilt to suit me an new decorated. I will live in walking distance from our Malin. :) (am visiting her now...and it's rough here...)

Kaddy, you have a tough fight in what's enough and not enough. I hope you can balance this all and get the best out of it. And I hope that pain will be controlled as much as possible.

You all take care and have a nice weekend!
/Nettan
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 24, 2012, 04:13:07 PM
Hi Nettan,

How lovely that your apartment will be so close to Malin! It sounds like it will be just the best thing for you, personally designed and everything 8) You lucky gal!

Sounds like your knees are vying for your attention, surgery-wise... ::) Darn things, would be nice if both could leave you in peace - at least for while ;)

My right knee is ok at the moment thanks, still functioning without too much pain, think that was just a little 'moment' to stop me getting complacent!

Have a good day, it's miserable here, cold wet and flooding all over the place. Eek. Not us though, we bought a house on a hill  8)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on November 24, 2012, 04:21:17 PM
Thanks !!

I will give M a hug too. She's awake again. I also took a nap here. Such girls we are. We should party and here we are!!
Time for some dinner. I have ordered pizza delivery to us, so must get out and get that now.
 Take care and enjoy Saturday!!/Nettan & Malin
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 24, 2012, 05:15:50 PM
Oh, that's so nice! Pizza, tv and good friends supporting each other  ;D that's about as good as it gets...

Yes, do please give Malin a hug from me, she's one brave gal, you're another, and I'm pretty feisty myself, lol! I hope you have a wonderful evening and you're both feeling pretty good consdiering ;) Me and the family are settling in to watch Top Gun tonight with plenty of popcorn and a roaring fire (if I can get it started - haven't done it for six months! The old firelighting skills haven't deserted me thus far so should be ok, lol). Be thinking of you both - enjoy that pizza.....mmmmmm...... 8)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on November 26, 2012, 01:12:27 AM
Awake with thousands emotions in my head and so is my friend Malin. Good that we have telephone. :)

So worried about her but also my own situation. I guess this is what I call typical RSD/CRPS life. You are awake when you are and sleep when you sleep.

Tomorrow is a big day on my fronts. There are decisions and plans made.

It's raining here full force. That makes sense for more pain. I guess another painpill is on the front and then try to sleep some.

We will update tomorrow me and my telephonefriend.
Good Night!/Nettan
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 26, 2012, 09:39:34 AM
Yes, telephones are lifesavers  :)

Hi Nettan,

Hope Malin ok this morning when you speak to her, give her my love please - I don't know her so it's a bit weird, lol, but think of her so much.

So how are you doing really? Sorry your pain level so high, hope it calms down now with pills. Which painkiller do you use that works best? I have several, don't know which way to go sometimes...

I hve had hideous night. Electric shock pains all over my body in random places for hours, making me jump, so painful, like a knife stabbing into me in various places. Left thigh, left wrist, right thigh, left hand, right nostril  ??? hip, toe, finger, shoulder, etc etc etc. So so tired. This morning I still feel crap. Left side of face tingly like sunburn, left hand tingling and painful, left wrist stabby pains. Plus of course the normal knee and foot crap. Honestly Nettan, I am so scared at the moment, just want this to turn around and find an even keel - but I don't think CRPS has one of those! Have rung doc, awaiting reply, but he doesn't really know the beast, so no doubt will focus on the words left side and pain, and just do cardio checks and say they are clear so off you trot... :-\

Hard to find the positives today I suppose. Tomorrow is another day though, must be better  8)

Take care of yourself Nettan, I know its hard when you are caring for someone, but take it easy where you can.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 26, 2012, 06:06:57 PM
Just an update really...

Saw the doctor this morning, he was a bit spooked I think. Admitted he doesn't know why it is happening, but I've got to come off the Lyrica ASAP and go onto Gabapentin to see if that works better. I am NOT looking forward to the change, hope to goodness the gaba does the trick though!

The electric shock type pains (more at kids game levels now, lol) are still there. Taken tramadol to no effect whatsoever  :( Wish somebody somewhere could invent a drug or treatment or whatever for CRPS that actually WORKS. I hate this 'better give this a try then' attitude....

Hope everyone else is having a good day out there. We've got terrible flooding here (our house is on a hill tho) and most of the roads are closed around us. Feel sorry for everyone with this damned water in their house...

Take care folks.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on November 27, 2012, 03:41:36 AM
Ok, here's the deal. I have been crying for the second night, but guess it's all to much now. Not the normal me.
You know the update on Malin. It's hard to be her friend and follow so close, as we are very close.
Me myself had a meeting with my neurosurgeon. With signs of spreading of my CRPS we have no other choice then to do a surgery on my right knee ASAP. It get stucked several times a day now and the inflammation and swelling and problems just turn out to be more and more.
We discussed it all and I will have to stay in hospital for a longer period after with epidural to have a good chance to come back and rehab without spreading of more CRPS. Tomorrow I will be set for an unloader brace and surgery is scheduled for 10th of Decemher.
I will have an osteotomy and cleaning up. I will get to know more later this week. Life is fun huh ? NOT !
But I'm thankful for being me and that I can continue do things still, but though take it easier then before.

Brams, sounds like some reaction on meds. Meds can be nasty. So could be an explanation. Not fun to react like that.
Hope it's temporary and all goes away quickly.

Going to try to sleep now. Almost 5 in the morning. PT tomorrow!
/Nettan

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 27, 2012, 09:50:53 AM
Oh Nettan  :( more surgery. I really hope this can ease some of your problems wth that knee, must have been such a difficult decision to make. How is your CRPS spreading? Mine went from knee to toes, then my whole foot, and now my opposite big toe. It's a strange beast isn't it?  ???

An osteotomy does not soound like fun, no. Why on earth would you think that?  ;D I think the epidural route is a good idea, having read up on a few people who used that approach of stopping all pain signals for the first few days after surgery, it definitely beats the alternative! Are they going to do one before surgery as well? I've read that the idea of doing one before is to get the pain under control and stop the incessant CRPS pain signals to the area, then operate when your system is dozing so to speak. I'll be following your surgery with everything crossed that it goes smoothly for you and leaves you in better shape...  :)

10th December isn't long, but maybe that's better than a long lead-up - even a few days waiting is anxious enough!

Keep in touch in the meantime, and I'll be thinking of you. (((Hugs Nettan)))

Brams  ;)

Yes, I read about Malin's surgery, my word she's having one rough time. I hope to goodness this cycle stops for her now and she can start to get better. I think of her every day. You're such a good friend to her, must be incredibly hard when you're feeling bad for yourself - but don't compare your situation to hers or think that you don't have the right to vent as much. You're one brave cookie yourself you know! Give yourself a big pat on the back and keep fighting the CRPS beast  :)

Nearly forgot! I'm ok today thanks, some of the shock type stuff all through yesterday on a low level, and a bit worse again last night (but not like before luckily), but I'm doing alright, just wish the doc would get back to me with this med change plan and prescription quickly. I'm hating every Lyrica I put in me now, which I know is not a useful attitude, but can't help it  :-\ x
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 27, 2012, 10:38:20 PM
Just a little update...

Shock pains seem to have subsided during the day today, but I've had pain in my hand and wrist all day. Now, over the last hour or so, I've had increasingly bad allodynia  in my left arm and hand. I can feel it burning up, unmistakable and new. My left hand in particular is bad, and even my husband (my control subject, lol) thinks my left hand is slightly swollen. Is this even possible?! Also my left knee and foot have been worse than usual, and now things are firing up, my left shin is pretty bad - and that hasn't got involved before either!

It hurts to type with my left hand  :o Crazy stuff.

Hope anyone reading this is having a better time today!  :)

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: JTB on November 28, 2012, 02:13:09 AM
Hey Bramble,

Thought I'd check in here on your CRPS thread and notch the post from the other side of the pond. Have been following your thread... and Nettans.... as well as Malins... and I wish I had something wise to say or could help. The best I can do is to care and let (all) of you know that I admire your collective and respective strengths and spirit.

Am probably in some classic stage of denial about what ails me. If I don't heal (and I don't seem to be) this stage will pass, right? Sadly, my hope is that if I don't and it does, that something more fruitful than this slow motion fight for my knees will occur. I get so tired of this struggle to win back my old life and am terrified that I won't, but at the same time have some awareness that if I did wake-up "cured," I might be at a loss as to what to do with myself. That would be a nice "problem"

There's a lot of "I" in there and that embarrasses me.

Anyhow, only good thoughts and kindness to you Bramble (and all here). Keep the CRPS thread alive, you have much good intention/information.

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Lottiefox on November 28, 2012, 09:13:07 AM
Sending many hugs to Brams and to Nettan - you are both having a really rough week. I hope things improve and Nettan good luck with the impending surgery. I know we'll be in touch via Fb. Am also following Malin's brave fight - what a girl.  8)  Brams I cannot offer any wisdom on the arm and hand symptoms apart from to say hopefully they will pass and will be a blip - CRPS seems to have zero logic.

JTB - I operate in continual denial! Seems to work OK but I have been so lucky in my symptom control. Luck of the draw I think and denial stops me thinking "what if" most of the time. Functional?! Maybe not - but! Keep up the fight to win back your old knee - hang in there!

Hugs to everyone having a rubbish week.

xxx

PS Kaddy hope your recovery is going OK too, will check out your thread xx
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 28, 2012, 09:18:36 AM

Am probably in some classic stage of denial about what ails me. If I don't heal (and I don't seem to be) this stage will pass, right? Sadly, my hope is that if I don't and it does, that something more fruitful than this slow motion fight for my knees will occur. I get so tired of this struggle to win back my old life and am terrified that I won't, but at the same time have some awareness that if I did wake-up "cured," I might be at a loss as to what to do with myself. That would be a nice "problem"


There's so much truth there JTB.... I know exactly what you mean. As times goes on I think you can and do settle into a state of some kind of acceptance, and move on with your life, but I don't know that you ever stop grieving for what you had and what you feel has been taken from you. I've sometimes said that I'd just like a weekend off this, just to get a few things done and experience some stuff I hadn't yet done - but then I imagine the hell of this being switched back on again afterwards. Eek!

Don't be embarrassed about the number of I's JTB. The way I see it, this site is here for all that stuff you can't ask/say/moan about when you're at home - from medical stuff, to saying how much it hurts today when you're family have heard it too often and can't respond like they did at the start... I've used it about ten times in my paragraph above! But if I start counting them, that's crazy, and if I halter my use of them, then that's just something else to worry about. Life's too short.  8)

Thanks JTB, you're very kind and posts like yours mean the world. It made me smile.

Keep in touch, and I hope you manage to have a good day today.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Kaddydee on November 29, 2012, 01:09:01 AM
Hi guys,

I don't know what to say but I'm thinking of you all.  So sorry to hear of the pain and continuous problems you are having.  I can't even think of a funny story or joke to brighten up your day!  That's probably good news for you because I'm a hopeless joke teller.

When I was in hospital the guy opposite me was a real inspiration, like you guys are.  Strong and encouraging to others even though life it tough.  This guy was early 30s and he'd grown up with bad diabetes.  He had had a double transplant and was hospital this time with one leg and several toes amputated and a skin graft that refuses to work.  This guy was the life of the room- happy, talkative and he had an amazing relationship with his wife.  I was blown away his attitude and it kept me going when i was frustrated and in pain.  You guys do the same.  I know you are struggling but by telling your story and the highs and lows that go with it you help a lot of people - so thanks!

Hope you have some little 'ups' in your day today!

Kaddydee
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on November 29, 2012, 02:03:51 AM
Oh now let's see if my head is awake with all I want to write to you all and all I want to say.
Funny is when I write I have to more or less look with one eye or look from one side. The morphine makes it hard to see straight in middle and concentrate. Feels like my nose is sooooooo big and in middle of the way for my eyesight. Nothing new this, usually happens at higher levels of morphine. :P

Brams, I hope the change of meds will be it for you and that you continue to feel less of that nasty feeling you had.
Must have been horrible. :-X

No I will not have any epidural before just during the surgery, but I will go in the evening before and will be hooked up already then and then keep it for some days. I will also be able see Malin as we are really close in the hospital to each other then.
Great doc I have that have spoken to her doc and is trying to make it better for both of us! Yes miracles do happen. :)
Malin will be going to this hospital on Friday.

JTB, I have a structure that I follow. I live with what I have for the day and do what I can with it just this day that I live for the moment.
Then I take this day and turn into goals that I try to do and achieve the same week. Not really longer plans than that. That works pretty well.
It's all about to get a structure that is working and a balance that is possible for the time being. Of course all things I don't achieve but they are in my mind and I plan to try. I hope you understand what I mean.
Something that was hard for me was when I wasn't sure if I would be in wheelchair for lifetime or not. I thought every one else that had wheelchair could look so good and cool in theirs. It wasn't that I wasn't ok with the wheelchair, I just wasn't sure if my workd was with others with disabilities only or with the world I was more used to, without disabilities. Now I know I don't need to pick, that I can have both!! Weird thoughts I know cause there are no difference really. We are all equal, just live in different ways. And everyone of us is unique no matter how we are or who we are.
Let time tell and don't be in a hurry about what life will give and have in mind for you.

Lottie, I try to update on FB more close. I hope you understood the last I wrote. It's very tricky, but it is a must with this change.

Kaddydee, the story you wrote is to hear about Malin (MDJ)!! Yes, you are so right, sharing and having an open mind helps a lot.
What we can't help ourselves with, if we can do something for others that is helpful for oneself also. :)

Yes, am having surgery the 10th. But actually I look forward to it. Now my right knee get stucked now and then and left leg with my break has also to suffer more. I know I will be fine, but it will take time. Now with me moving and coming close to Malin ( she had her things moved to the new apartment today) will make it easier for us to help each other. I will have help when I get home after surgery and so will she.

Have had a rough evening and it's now 3AM, but I know I can sleep tomorrow morning and so I will.

You all take care of you....Nettan 8)




Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on November 29, 2012, 09:32:29 AM
Oh Nettan, you made me chuckle at your nose sensations on the morphine! Funny but not if you know what I mean.... ;)

The shock sensations have subsided a lot thanks. Phew. But they seem to have left behind that over-sensitive feeling in my left arm, I didn't have that before, but am hoping it is just a temporary thing and subsides quickly... Still no news from the doc about the med change, they do take their time  ::) I'm getting less and less happy taking the Lyrica though, after I've taken them I feel like they won't go down properly! Feels like they get stuck half way down and I have to drink a lot of water, then with my late ones before bed, I find when I'm lying in bed my stomach suddenly does this pop thing and some air comes out of my throat - cant describe it any better, it's not a burp, just an air thing. Really weird, never had it before the last couple of weeks. You ever had that Lottie?

Am so glad you will be able to see and talk to Malin when you're in for your surgery, that'll maybe help both of you with recovery. I'm glad she is being moved closer at last, you must feel so relieved. As you say, miracle doc. Hope the ones at the new hospital are as good!

Yes yes on the wheelchair thing. I haven't used mine for a week or so at the moment, and I know when I next do I'll get that little frisson of weirdness as I get in, then within a minute I'll feel great. Very odd. I saw a young woman in hers the other day going to see the floods we had in town, she looked so natural in hers and was coping just fine on her own, obviously had a lot of practice! I wondered whether she could walk on her own or just had a lot of difficulty doing so...funniy the things that go through your head. Like you it made me think that we just do what we have to, everyone is different, levels of disability are different, and a wheelchair is just a tool.

Not long to go until the 10th now, we'll all be rooting for you  :)

Take care in the meantime,

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on December 01, 2012, 10:35:15 PM
Hope everyone is doing okey out there in the cold icecold weather.
Snowing gently here off and on, but so very cold. Honestly I can't be out.
I get bonepain in both my legs, the pain you have in the skeleton. I remember had bad such after microfracture in my right knee in 2007.
Not even being in one spot though I have doubled my morphine, doesn't almost touch the pain.
I have had some burning on the lateral side of my right knee more almost to the back below my knee. I hope is not rsd/crps, more then pain from the cartilage damages. Oh well cross fingers and toes. I feel like the most whiney in this world.

I spoke with Malin like an hour ago, we whined and the cried and then laughed together. Then you feel really that you are the best of friends !!! :)
I have my son and his friend going there tomorrow with all her stuff. My home is filled now with music equipment, both hers and my sons, as he is a DJ. 8)


Brams, how are you doing today ?? I know this with meds when they get stucked. But stupid me is always swallowing without liquids nowadays.
I have been on meds for so many years and gotten used to it. So hard sometimes when out and find something to drink while you need it.

All best, over and out from la Swede! ;D

Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on December 02, 2012, 12:08:07 AM
Bonjour la Swede!

Oh hell yes I know (to some extent anyway) that bonepain thing, hurts way deep inside, horrible thing. I had it last winter a little bit, thought it was bad then, but this years it's lots worse and I can't bear to be outside even in our paltry cold so far! Within about five minutes my skin is screaming at me and my bones are ice in my leg. Mind you I can get the ice-bone thing anyway, even without the help of the British weather  ::)

Sorry your pain has been so bad. I count myself very fortunate not to have got near the morphine stage yet, and it's something that does scare me. When i had those horrible shock pains early in the week I took some tramadol and it did diddly-squat, didn't even make me feel woozy. Makes you think. Hopefully that right knee pain of yours will ease off and give you a tiny bit of peace. Bloody other body parts trying to get in on the act! How selfish!  ;D

Glad you got to speak to Malin and had a good confab together, must have made you both feel a bit better and made you feel less alone with everything you're dealing with at the moment. How are you holding up? Not long to go now, I will keep up my thoughts for a good outcome for you both, no less than you deserve  ;)

I'm eating a few bites of something after the tabs now, seems to help although I do feel pathetic about it when you see these folk just eating the damn things without so much as a sip of water to help them down  :P My right knee joined my left in a battle of 'who can be hottest and sorest' last night. When that happens I find it hard not to worry about the CRPS spreading there as well. It's wandered from my left knee down to my foot, and across to my right big toe.... It's only happened half a dozen times altogether though in the last few months, so I'm valiantly trying to ignore its shouts! My left is very fat this week, and gave wagon me this morning, which really shook me up. Hate it. There, that's my moan for the day...I think!

Take care of yourself Nettan, you and Malin are lucky to have each other for that support and closeness only the best of friends can give. I have some good friends, but my best friend lives a long way away and has done for years now. When we get to meet up we just fall straight back into conversations, and it's the same as ever, but our lives are very different and I miss her like mad. Hey ho. Can't have everything, lol.

Hope you get a decent sleep tonight and that the pain beast sleeps too...

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on December 03, 2012, 02:40:58 AM
03.40 AM in the morning and guess what I'm wide awake. My pain levels are no this world. :'(
Been on the phone right now with our friend, she was also wide awake.
I called and could take some more, but need to stay awake a bit cause of that.
Breathing can be effected. Am angry and sad!
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on December 03, 2012, 08:53:26 AM
Oh Nettan  :( I'm sorry you're having such a rough night. Hope you are asleep by now or feeling a bit better at least... Bit of a rough night myself with a return of the shock tactics, but only for a bit, rest of the wakefulness due to our old friend pain......sigh....? (((hug)))

Take care of yourself today and will be thinking of you and your friend there also having a tough time  ::)

May today be kinder to us all.

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Nettan on December 03, 2012, 12:41:22 PM
I hope for a good day for everyone. I got an hour of sleep, so will be napping and be today.

Tomorrow I will go to our friend, she's having a rough day today, but so far all goes well. The epidural is lowered slowly.

Brams, hope your day is a good one. Talk more later!
/Nettan
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on December 03, 2012, 02:34:40 PM
I hear you on the sleep Nettan. Wretched night here too, although I did get a few hours so won't be as zombied as you! Hope you feel ok. Will be thinking of your friend as that epidural is lowered...fingers crossed...

Well the day started well and went downhill!! It's 2pm now and I want to curl up on the sofa for the rest of the day! Shattered....

Not best start actully, husband had booked day off for us to go Christmas shopping, but youngest daughter is off school ill this morning with a sore throat and bit of a temperature. Nice. So we had to take the poor morsel with us... Drama getting out of house for hospital appointment due to stupid kitten escaping out of front door (not allowed) and then escaping up tree for fifteen minutes. Finally coaxed her down with some of last night's stew after standing around in the cold. Leg NOT happy one bit. Rang doc to let her know I'd be late, got there when I'd said, then still waited another 30 mins anyway  ::) Doc gave me titration plan, very complicated lark, need a chemist with a PhD to live with me for the next two weeks and make sure I get it right, lol. She is 'concerned we are not heading in the right direction with this' (love doctor talk) and is referring me to Bath for a 3-week stay  :o :o with weekends off for good behaviour. Eek. She warned me it's a long process, and they have to apply to the trust for funding, so have no guarantee will get it - there's always some poor bugger worse off... Also, she was not surprised the tramadol wasnt doing much, and was terribly sorry but she couldn't give me anything stronger for pain relief at the moment until I've got onto the Gabapentin. Nooo. That has done nowt for my mood.

Then to cap it off, I had to go to the hospital pharmacy to get the prescription - she said the queue wasn't too bad today (famous last words) - got there eventually (receptionist - "ooh it's not far love, just down there, turn right and it's on the left...) after a VERY long painful limp (took crutches didn't I....bloody idiot. Should've taken chair but wanted to look like I was making an effort. Wally). Half an hour wait. AND the pharmacy women were soooooooooooooooooo helpful and kind. Not. Too busy yakking behind the screens to get much done. Grrr.

Finally arrived back two hours later than planned, knackered, hungry and frankly a bit tearful and boohoo. And feeling very guilty for dragging sick child and day-off husband through all that! So I am in no mood for Christmas shopping this afternoon!!! ;D My daring long-suffering husband has just got back with some lunch, bless him (no coeliac rolls left of course, sod's law working overtime today) and I'm hoping once I've eaten I'll feel a bit more like it. Going to be a long afternoon though I fancy....

There you go. Thanks for listening  ;) I feel cleansed of the whole grisly experience, lol.

Hope you are having better days!

Brams  ;)
Title: Re: Anyone with CRPS/RSD in their knee??!
Post by: Brambledog on February 13, 2013, 11:59:09 AM
Hi CRPS folk,

Got out of the shower this morning and really noticed how shiny, dry and thin the skin around my knee is. Anyone have this? I'm not sure how much is due to this new fun big swelling I've had for the last three weeks, as I know it was a bit shiny before. But this was freaky!

I've got some monoi oil I thought I might try on it, anyone used anything particular?

Hurt my knee while physio trying to get me walking better three weeks ago, knee really flared up with big swelling, and it still hasn't gone down. I'm elevating and massaging the swelling away whenever I can, and still exercising gently and walking a bit, but am having to use crutches all the time again as my knee is so unstable and feels like someone slipped a big wet sponge inside my knee - I don't know quite what might happen every time I put it to the floor and put my weight on it. I know it's a flare, but I was told it would settle in about a week. Bit scary now tbh!

How are you all doing? Hope the pain levels are low and you are getting some fun in.

Brams ;)