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Author Topic: Anyone with CRPS/RSD in their knee??!  (Read 32800 times)

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Offline Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #60 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

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #61 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  ;)

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 #62 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
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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #63 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


Offline Lottiefox

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #64 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
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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #65 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

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #66 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  ;)
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 katsinger

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #67 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  :)

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #68 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  ;)
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 #69 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
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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #70 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

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #71 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  ;)
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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #72 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

Offline Brambledog

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #73 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  ;)
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 Kaddydee

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Re: Anyone with CRPS/RSD in their knee??!
« Reply #74 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