Does anyone suffer from Reflex Sympathetic Dystropy/Complex Regional Pain Syndrome?

[Claire L]

I have recently been diagnosed with Reflex Sympathetic Dystropy otherwise known as Complex Regional Pain Syndrome. It all started with being kicked in the arm/shoulder last August. To start with Dr's thought I had muscle and soft tissue damage but none of the obvious treatments such as physiotherapy, TENS machine or accupuncture worked.
In December I was refered to a Pain Clinic and was diagnosed with RSD/CRPS. Since then have been placed on tablets, Gabapentin for neuropathic pain and have started a course of 3 Guanethidine arm blocks! Hopefully this will help with the pain and coldness/change of colour in my arm and hand. My hand is already feeling warmer but pain has increased in my shoulder and back so am also on Co Dydramol when pain is bad, usually during very cold weather.
Having searched the internet I found that RSD/CRPS is not as uncommon as it sounds and wondered if anyone Dis Boards has any experience of it?
Claire

 

[chager]

I have never even heard of it so I don't have any words of wisdom. I do pray this new course of treatment works well for you.

 

[Claire L]

Thank you Carolyn for the wishes.
Claire

 

[mickeysaver]

I have heard of it. My ex had it after she had her hand crushed in an industrial sized Hobart mixer at work. She had intense pain and increasing numbness and pain that crept up her arm over the course of a few weeks/months. It was aweful. She was in such pain and it took a couple of rounds of nerve blocks to get it to finally resolve.

I would not wish this on my worst enemy. I'm sorry to hear that you are having to endure this. Maggie

 

[dumboiu]

My youngest daughter has had it twice. It is not pleasant. Intensive physical therapy worked for her both times (once outpatient, once inpatient). If you want any more information regarding our experience, PM me.

 

[Claire L]

Dumboiu
Thanks I have PM'd you.
Claire

 

[dumboiu]

Originally posted by Claire L
Dumboiu
Thanks I have PM'd you.
Claire

Answered!

 

[iluvdisney]

I have also been diagnosed with RSDS and it is not a fun experience, that's for sure.
I have been going to physical therapy and it's helping a bit but the therapist and I are both hoping that my upcoming trip to warmer weather will help. The cold weather sure does seem to aggravate the situation in my case.
I have also been reading up on any information I can find on the internet. Good luck with your treatments.

 

[CindyBeth]

I also have had it, back when I broke my foot, set the whole thing off. I had 2 nerve blocks, did biofeedback, moist heat & physical therapy. It took almost a whole year to recover but I finally did and was I happy!

 

[Claire L]

CindyBeth,
I'm glad to hear that you finally got better. But doesn't it take a while? A quick diagnosis is the key to helping a long way. Have you had any problems since?
Claire

 

[CindyBeth]

Claire,

It does take awhile, mine was about a year, maybe a little longer! But it is a slooooowwww recovery. I would notice that it would bother me less and less but then sometimes alot. But it was like a decrease of attacks of pain and the other symthoms(sp). Since mine was in my foot, I learned that keeping it up, helped alot! But I had to go on physical therapy to get my muscle tone back as all my muscle atophied after not using them for a year. I have not had it again, thanks goodness!, even though I have hurt the same foot a couple of times since then. But I was so paronoid that I would!

If you have any other questions, just ask!

Good Luck!

 

[Claire L]

CindyBeth,
Thanks for the offer of asking any questions. One thing I think I will be cautious of once this is settled is any falls or injuries in future! Oh well at least I now know and hopefully if it does every reoccur once gone then I know what to do and to request a referral to my local pain clinic if it looks like RSD is back!
Claire

 

[iluvdisney]

Has anyone here run into this problem?
I broke my wrist back in July - recovery was very slow - lots of swelling and pain in my hand. Now I still have crooked fingers on that hand - like in they are locked at the knuckles - I've been going to therapy since Oct and will finish that up soon.
I'm going down to Florida for a week with the hopes that the warmer weather will help - I'm just afraid that it won't be long enough.
My PT is as baffled as I am as to why my knuckles are locked and the dr isn't worried. I do have a weird device that I wear for a couple of hours a day to try and straighten out the fingers some and I have some exercises that I do every day too. There has been some minor improvement but it's very slow in coming.
Anyone else with a problem similar to this?

 

[Claire L]

iluvdisney,
I haven't personally heard of this but reading from the internet it looks as if one of the symptons is called claw hand, would this describe your hand?? If so then speak to someone else maybe another doctor to put your mind at rest and if there is something else to help they may be able to point you in the right direction. Sorry I can't be of more help.
Claire

 

[iluvdisney]

Claire - that was the nickname I gave my hand until just recently. I had a hard time sleeping last night so I've been doing too much reading on this diagnosis.
I have changed drs - mainly cuz the one I was seeing moved away and I have to say that I am not impressed by the medical drs I've seen since I broke my wrist. Going to see my physical therapist in a few hours, maybe she will give me some hope. Thanks for the advice.

 

[Claire L]

Mary,
I think warmer weather does help. I was assulted in August last year and the problems started immediatley. In October I took a weeks holiday to warmer clims - Lanzarote with DH. I was much better during this week although not pain free it was alot better. Hope you feel better once in the warmer climate even if for a short time. Also how did it go with your PT?
Claire

 

[iluvdisney]

Had my appt with physical therapy - and had a long talk with the therapist about RSDS. She was very reassuring which was nice and explained that I am in the second stage and improving since I first started coming there. She gave me another device to wear and I will alternate that with my "edward scissorhands" device each day. My PT also assured me that I am doing everything right and that it will take time for recovery - seems like I've been waiting forever for this hand to get better. Off to do my exercises tonight and thanks for all the kind words. It won't be too long before I feel the warmth of Florida on me!