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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 29180 times)

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Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #15 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  ;)
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 #16 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #17 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  ;)
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 #18 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #19 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  ;)
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 #20 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.

Offline fluttersby

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #21 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #22 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  ;)
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 #23 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.

Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #24 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
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 Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #25 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  ;)
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 #26 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #27 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  ;)
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 #28 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.

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #29 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  ;)
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
;-)















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