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Author Topic: Reflex sympathetic dystrophy / CRPS  (Read 1805 times)

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Offline lbest

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Reflex sympathetic dystrophy / CRPS
« on: February 07, 2013, 09:32:56 PM »
. Hi everyone, hope you are all well! Last year I had an accident and my injuries included a dislocated knee cap which resulted in my kneecap being very unstable. In April 2012 i had an athroscopy where they done a debridement, removed my plica as this was catching between my knee and also resurfaced my knee joint. Unfortunateley this didnt make any difference to the stability of my knee cap so i underwent further surgery in June 2012 which resulted in an internal knee brace and band being fitted inside my knee and also had some tissue reconstruction. Again this didnt make any difference to the stability of my knee cap and i was still having subluxations and dislocations. In October 2012 i had another debridement and a medial release. Since then i have still suffered dislocations and am now facing the prospect of more surgery. This is possibly going to be an ACL reconstruction from hamstring graft. Prior to my accident  I had previous knee surgery on the same knee 9 years ago for patella stability. My pevious surgery included a lateral release, hausers procedure and a hausers revision. After the hausers revision my knee was great and didnt cause me any problems at all. Since my accident last year ive been suffering severe painand a burning sensation in my knee. My knee gets really hot regularly and also at times goes a purple and/or black colour. This happens on a daily basis particularly if its cold or if im on my feet longer than 5 or 10 minutes. Also i have severe muscle atrophy on my leg at both my thigh and calf. 10cm from my thigh and 4cm from my calf. Despite 3 operations and 1 year of my physio i am no better off and am still having to use 2 crutches and a knee brace as well as taking very strong controlled medication, if anything the pains getting worse instead of better! The discolouration happened at my physio session this week and my physio mentioned RSD. This is the first anyone has mentioned this and i was wondering if anyone who suffers from RSD would be able to give me some advice and information on it? I have an appointment with the surgeon on Monday to discuss my most recent MRI results and discuss the options of more surgery so will speak to him about this however I am very worried about this at the moment. Any help or advice is greatly appreciated! thanks x

Offline Brambledog

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #1 on: February 07, 2013, 11:49:16 PM »
Hi,

I have CRPS myself following an arthroscopy 18 months ago, and yes your symptoms do sound very like CRPS. I have those too. Only a doc can diagnose it, but it is probably a good idea to be prepared and to read up on the condition before seeing your surgeon next week. If it is confirmed (or even suspected) as CRPS, then surgery must only be a last-resort now, as any more cutting into that knee could worsen the symptoms even more, so it's really important that your surgeon think seriously about it and not dismiss it.

With CRPS it's really important to get treatment quickly. With all your surgeries it's difficult to know when it started, but you ned to be really proactive (I know to my cost how laid back docs can be on this thing) and push for treatment. It can improve a lot with good, aggressive treatment, but equally it can stick around... There is lots they can do tho, so read up as much as you can and be prepared with a list of questions and some ideas of your own.... If your surgeon has another explanation for your symptoms then you won't have lost anything.

Any questions do feel free to ask. There are several other threads discussing CRPS, if you search for the term using the search box on the top right you should find them.

As for in the meantime, do not use ice on the knee as CRPS and ice are not good chums, and it can make things worse. Get hold of some unfragranced Epsom salts (you can get them online or a decent pharmacy) and either use them in a bath or put a couple of tablespoons wrapped in a damp cloth and laid over your knee - only do this if your wounds have healed though. Epsoms work on the calcium channels and block some of the pain signals, and also take some of the heat out of the joint, little wonders they are! Elevate your knee higher than your heart if the swelling is bad, but keep the joint moving gently on a regular basis, as CRPS doesn't like to sit still and this tends to aggravate it.

Obviously, I hope it isn't CRPS, but I will be surprised (pleasantly!) if it's not. Take care of yourself this weekend, and good luck for your appointment. Let me know how you get on, and PM me if I can be any help.

All the best,

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: Reflex sympathetic dystrophy / CRPS
« Reply #2 on: February 08, 2013, 01:59:26 PM »
Hey lbest

Your poor knee sounds like it has been through the mill. Can I ask what country you're in? You'll find that knowledge and detection of RSD is patchy to say the least and some countries or specialities seem more tuned in to the possibility than others. Your symptoms do sound like RSD/CRPS but as Brams says only a doctor can truly diagnose and even then they often seem unprepared. Do as MUCH reading as you can from factual websites, not the scare yourself witless sites that do exist. If it is CRPS then you need early and focused treatment through all of the avenues you can get - medications, physio, hydro, self-help...but as said more surgery on a limb with it is not recommended, certainly not until some form of good control or even remission is gained. Plus the ice tip is a great one - ice can spread or worsen the RSD.

Good luck, and keep us posted

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 lbest

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #3 on: February 09, 2013, 05:48:05 PM »
Thank you so much brams and lottie for taking the time to reply to my post. Very strange that you both mentioned the ice thing as I haven't been able to tolerate ice on my knee at all since my 1st lot of surgery last year. You both have gave me great information and have already started on my list of questions for the surgeon on Monday. I just have 2 questions which you may be able to help with if you both don't mind. The first is what tests are carried out to diagnose this? And the second is just really an observation that I've made. My knee gets particularly bad when I'm standing in the shower, so much so that I've only been able to go in a bath for at least 6 months, is this something that is common with rsd / crps. I am in Scotland lottie. Thanks again for taking the time to read my post and reply xx
« Last Edit: February 09, 2013, 05:50:10 PM by lbest »

Offline Lottiefox

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #4 on: February 09, 2013, 08:42:51 PM »
Hi

Glad we are able to provide some useful information. I don't have CRPS in my knee, but developed it in my forefoot after a fusion in 2011. Slightly different as the foot has far fewer muscles etc that get affected and PT is very different. I was very lucky to be diagnosed within 3 days of it developing by a wonderful foot surgeon and then seen by skilled pain management within the first week. My diagnosis was made on symptoms - red/purple/blotchy/mottled skin, shiny skin, weird temperature - freezing cold but sweaty with it, sensitivity to touch (extreme at the first stage), and of course pain so bad I sat and whimpered whilst my husband thought I was having a stroke or something. I am controlled by Pregabelin, and have been fortunate. Knees are different and Brams (unfortunately) is a great resource for how it might present in your joint.

You asked about diagnosis - there are criteria they will look to fulfill including the type of symptoms listed above but people present differently. I will try and find the current list they are using so you can see and perhaps even take with you. There is the possibility of a spinal (lumbar) nerve block to see if this reverses the symptoms and if so, for how long. Blocks can work well for some people but they need to be tried within the first 6 - 12 months ideally. The theory with the block is that if it changes the symptoms then the sympathetic nervous system is out of whack and might be able to be rebooted. CRPS falls into that sphere outside of our conscious control but studies have shown that things like biofeedback, meditation, distraction etc can feed into relieving pain levels. They may also try different pain meds - CRPS pain typically responds to neuropathic pain meds rather than opiates like codeine - hence why I am on Lyrica (Pregabelin). As with all things CRPS based different meds work for different people. In my first six months I also took an anti depressant (not because I was depressed although I was generally fed up!) but because they work well with the Pregabalin.

The shower is a good one - two years on and I still hate a shower on my foot. I can bath it, and I do shower but I wear a very lightweight trainer sock on my foot. The sort of cheap ones in Tesco. It seems to work, otherwise the water hitting my foot doesn't make it happy. I do tend to then elevate it for a few mins whilst I dry hair, even now. You could try wrapping your knee, just in a lightweight "something" - feet are so much easier to tuck up! I would also echo the Epsom suggestion. I buy mine on Ebay, search for Epsom Salts pharamaceutical grade and you can buy 2kgs for about a fiver. Wonderful for the burning.

Do keep us posted. Read as much as you can, if you look at the Bath Royal national Hospital website they have a CRPS service and there is a good information pack. This should link to it, but my internet is slow tonight to check if its working!

http://staff.bath.ac.uk/psskr/patient%20leaflet%20version%201.pdf

Good luck. CRPS is a strange beast. Hang in there (still hope you don't have it, but if you do- push for as MUCH input as you can!)

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 lbest

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #5 on: February 11, 2013, 07:13:19 PM »
Hi everyone had appointment with consultant today and as you all suspected I do indeed have rsd :( my surgery has been put off and I've been ordered to rest my leg as much as possible. I asked the doctor what else I could do and he said nothing except rest. Is there any medications or anything that I will be put on? What is the next step as the consultant didn't say too much about what happens next. Thanks xx

Offline Lottiefox

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #6 on: February 11, 2013, 07:38:58 PM »
Sorry you have been told it is RSD - you need a referral to pain management asap - did your OS say anything about this? pain management need to look at the right meds for you and also find physio that understands RSD and what to do to manage it. What meds are you on currently? Rest is actually not that great for RSD although over exertion is also not ideal. RSD/CRPS hates immobility - it often happens when limbs are immobilised and hence to try and help it movement is seen as key. Keeping an RSD limb too still can lead to more muscle loss - movement is actually a big part of good therapy with it. Obviously I don't know what else might be a problem with your knee, such as the mechanical things that may of course need rest to heal - kind of questions to ask your surgeon. It will be a balance between what is mechanically wrong in your knee and what the RSD is affecting - not an easy thing to work out. Do you have physio ongoing? The fact they mentioned it could be RSD perhaps is a good indicator they can help you move forwards now?

Take care,

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 Brambledog

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #7 on: February 11, 2013, 09:24:30 PM »
Hi Ibest,

I'm really sorry you've had the diagnosis confirmed, but as long as you educate yourself as much as possible and get really proactive about your own treatment, there is a still a chance you can stamp the danged thing down to a background pest. Just don't let your doctors sit on their hands for weeks (I speak from experience ::)) during these early months when treatment has the best chance.

You will probably be referred to a pain management specialist next who will advise and prescribe treatment like meds and therapies. Personally I would try as much as you reasonably can by way of therapies, hydro is particularly good if you are struggling with physio as the water is very kind. I loved hydro! 8)

I would keep your leg moving regularly, work on your ROM and muscle strength, and try not to let the pain stop you moving about...very hard I know, but your doctors advice to rest your leg is actually not the best idea. I'm not a specialist, but I've read A LOT  :D and I've had CRPS in my knee for 18 months now, and I know that inactivity makes the pain worse, reduces your mobility, and ultimately affects your confidence and your life in general. You need to keep things normal as much as you can, and not let this stop you, or it can take over... ;)

Keep positive and I hope you have a good week! Anything I can help with, feel free to PM me.

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 lbest

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #8 on: February 15, 2013, 02:11:13 PM »
Hi apologies for the late reply. I think the reason that ive to rest is due to the fact that my patella is balancing on my femur and could dislocate either outwards or inwards, it has no support at the moment as both patella and bone have worn away. I have very basic physio ongoing at the moment and have been having regular physio for 1 year now. My physio has been downgraded since my consultant appointment as he doesn't want to aggravate my knee and bone pain anymore and is also really worried about further dislocations. The consultant didnt mention anything about a pain clinic he just told me to come back in 6 weeks, is it normal to wait this long? I have an appointment with my own gp next week so will be sure to mention it to her too. The consultant only looked at my leg and done an assessment to diagnose the rsd. he has previously done surgery on the knee and ive had several mri's but not sure from what i've read that this would show RSD. Is this right or is there any specific tests that I should be pushing for? To be honest he didn't give me very much info at all in to RSD. Ive read online that its broken down in to stages, is this correct and if so how do you know what stage you are at? sorry for all the questions, the consultant isnt the best at answering my questions.

Hope your all well! :) x

Offline Brambledog

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Re: Reflex sympathetic dystrophy / CRPS
« Reply #9 on: February 15, 2013, 03:59:09 PM »
Hi Ibest,

Sorry things are so difficult, can't imagine having that much damage to my PF joint, mine is pretty bad at the moment and I really want an MRI to check what's going on in there to cause all the pain and swelling at the moment, but no one wants to do it - they just see the CRPS and think 'what's the point?'. I'll try to answe your Q's, but keep reading that research and stuff. I can send you a load of links to read if you ever feel like it!

I'm not surprised your consultant didn't mention pain clinic, IMHO ortho's are not massively involved in anything outside of their theatre... Your GP can refer you to pain clinic, push for him to ask for a quick appt, preferably with someone who is experienced with CRPS! CRPS needs treating early and properly, but your GP may not know much (if anything) about CRPS, so be prepared for a fight... I would suggest asking him start you on some meds for it straight away - the normal 3 are amitriptyline, Gabapentin and pregabelin (Lyrica). Lyrica is expensive, so they will probably start with one of the other two. I had a lot of success with ami at the start, helped with the pain within 3 days.

You can't really test for CRPS with normal tests. Diagnosis is mostly a visual and tactile thing - they look for the physical symptoms like heat/cold, colours, burning, sensitivity, etc. An MRI might show some bone changes or muscle wastage, but only usually after several months. You can have a thermal imaging test which shows changes in temp in different areas, but I've never been offered one, and the doc looked at me like I was mad when I asked!

It used to be thought of as a staged disease, but that is gradually being abandoned. The three stages you will have seen don't always apply, and people's experiences vary like mad. I don't think CRPS can be pinned down quite that neatly.... The docs all claim to know CRPS intimately and be really sure, but the honest truth is that NO-ONE really knows how CRPS should really be tackled. They just try different meds and therapies and hope. The most effective things so far are physio and one of the meds mentioned above... Although interestingly in the leaflet for the specialist centre in Bath, they say they have found most meds to be largely ineffective against CRPS and they try to wean you off them!! Hmm...

Re the stages, its difficult to be objective. I'm 18 months in, and it feels pretty crap at the moment, but I'm hoping for things to calm down soon so I can get on with my life!

Hope this has helped a bit, but read all you can. I don't know everything about this thing by a long chalk. Anything new you come across, I'll be interested to hear...

All the best,

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
;-)