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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 28679 times)

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Offline Brambledog

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Anyone with CRPS/RSD in their knee??!
« 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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #1 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #2 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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #3 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.




Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #4 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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #5 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. 

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #6 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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #7 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
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #8 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."

Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #9 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
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #10 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.

Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #11 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
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #12 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #13 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  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #14 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.