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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi, I have sweating, numbness in certain parts of my right hand, joint stiffness, nail growth, hair growth, skin sensitivity (but not terrible)...but not the terrible pain. (My P.T. says I have the signs of RSD but not a full-blown presentation.) I broke my wrist, had surgery, and have not done well in the therapy, and now they say they need to operate again for a different structural problem in the wrist. The p.t. who is aware of RSD says that this is actually the best move, since leaving the structural problem (a misalignment of the ulna and radius) untreated would keep me in a certain level of "referred pain" and perhaps bring the true pain of RSD on. On the other hand, I wonder if the trauma and immobilization of the second surgery will bring RSD on. Mostly, I am trying to find a way to stop worrying and driving myself crazy. Thanks for listening...
Sherri
Welcome to the board. You have a smart PT. And you are lucky not to have the pain! You might check into asking for a proactive treatment during the surgery, the way they do for surgery on people who already have RSD. The exact term is escaping me right now (epidural, block--help me, Sharon) but they put it in both before and after the surgery. I read an article in Newsweek, I think it was, a few months ago about how the Army was doing it on injured soldiers to prevent RSD. Good luck. You will find lots of caring people on this board.
Sunny
Sherri,
I can fully understand you fear.. I would be thinking twice about it myself.. I just have a couple questions for you if you don't mind. How long to they feel you have had RSD for? Who actually DX you with RSD? The reason why I am asking this is I think I would be very cautious with surgery until you get a second opinion.. I would hate to see you do more harm... It could throw you right into full blown RSD.. Thats my concern.. and If all it takes is a second opinion I would go for it.. Are you seeing a hand specialist or a neurologist? I don't want to scare you.. I just don't want to see you hurt yourself more..
Do you have any swelling going on? What other type of treatments have you had for this?
Let me tell a little story.. I injured my cervical spine. After months of going through PT.. and lots of drs. I was finally sent to neurosurgeon.. Who said I was a canidate for cervical infushion.. But... He refused to do it.. He felt that I had RSD.. and he felt that if I got the RSD under control that maybe the problems I am having with my cervical spine would subside a little.. I was a little unsure about it when he first said it.. well two yrs later.. I am so happy I listened to him.. Since then I have been treated for the RSD and the pain and numbness of my hands and neck have disappeared.. So this is why I would rather see you get a second opinion.. RSD is tough call.. You need to find a good dr who is well knowleged about RSD not a PT.. This is just my opinion.. I really do wish you well.. I only want the best for you.. Good luck and let us know how you are doing..
Michelle
You're right, Michelle. I didn't mean to imply that the PT should be the one to actually diagnose RSD. A second opinion would be very wise. I just was impressed that the PT knew about RSD. My husband was sent to PT a few years ago, specifically for the RSD and the PT had to read a book to learn what it was, the day after his first appointment and even then didn't know what kind of physical therapy to do. So, hopefully, anything anyone can do to stave off RSD would be the best, whether it would be to have the surgery or not to have it. Finding a doctor who knows about RSD would be the most important thing. Hope you can get some answers.
Sunny
I think its great that a PT picked it up.. Its actually amazing.. We have drs out there that don't know anything.. and here a PT picks it up. lol..
Another positive thing.. He will know how to treat it.. I went for PT for two yrs to treat my herniated dics. I woul complain constantly about my hands burning.. He would put ice on them and my neck.. (worse thing for RSD).. not once did he ever mention RSD to me.. So hats to your PT...
AS for looking for a DR.. I would start with a neurologist... The are usually the ones who DX RSD.. and should be up to date with it also... And if your in great pain.. I would see a Pain management dr.. Just to help you get your pain under control.. PM dr. should also be well aware of RSD..
How are you feeling tonite.. Does the pain seem to get worse in the evening for you........I wish you luck on your decesion to have surgery or not.. I hope everything goes well. Try to think positive.. I know is hard..
Michelle
Hi,
I am pretty new to this board myself. Just want to echo, a second or third opinion would be wise. I had mentioned in the other posts. I had a friend who broke her foot and had surgery. She then developed RSD. She had to redo the surgery for whatever reason(can't remember). Before they did the surgery on her foot, they injected two blocks and she was in full remission. Hope this help!
Anita
To inject a light happy note into this, being that you don't have the overwhelming pain, it may just be that you have a compressed nerve which the 2nd surgery would take care of and make the other stuff disappear. It's not something you hear of often, but I've known a few people in the past 4 years now that were misdiagnosed with RSD when their problem was a compressed nerve. It seems to somewhat imitate some symptoms of RSD. A second opinion is always a good thing though.

I second the block both pre and post op which may prevent full blown RSD if that is in fact what you have the beginning of. I have read some medical papers which say that it really does help.

The first PT woman that I saw thankfully knew what RSD was as well and let me go at my own pace during sessions, never pushed me and always had hot compresses ready for when I came in. At the same place when I was sent to PT a second time, that woman knew absolutely nothing and had never heard of it so she felt I was rather defiant because I refused to do more than I felt I should and a couple of times I did it her way and was in tears and blubbering before 5 minutes was up. She soon saw things my way and stopped that. I always refused ice though which she tried to slap on me the first visit and I calmly explained to her why you can't use ice on a person with RSD.

Hugs,

Karen
[QUOTE=Michelle1982;3137176]Hello everyone.

I have read several times not to use ice at any costs. What is the reason for that? What does it do?

Thanks!

Michelle[/QUOTE]

From my personal experience it flares the pain through the roof. Over all, when you put ice on an injury, ice causes the blood vessels and nerves to constrict, reducing blood flow to that part of the body and numbing it. With RSD, it has already restricted blood flow to your limbs, that's why the skin shows color changes, and using ice besides making yourself hurt more, further restricts blood flow to the limb or limbs and causes the vessels and nerves to constrict even more than they already are making things worse.

Hugs,

Karen
Hi, this is Sherri...unfortunately, the pain showed up last night--some in my right wrist (the broken one) but more in my left hand, wrist, all the way up my arm and even in the back of my shoulder. Have you heard of this? Is my body "referring" the pain elsewhere? Thank you so much for the advice about the blocks before and after surgery. (Would I now need to get them in both arms?) I hope that the doc I see on Tuesday for the second opinion will know about RSD and will refer me to someone who can diagnose it before we do the surgery.
Michelle,
From what I was told. repetitive use of ice freezes the mylenlin. I think thats the tissues that surround the large nerve fibers. It causes something like freezer damage to the myelin nerves. Then what happens is you develope sensory loss and pain do to permanent damage to the large nerve fibers. This is was aggravates the RSD. I also heard yo can have failure to nerve blocks because of the damage that can be done.. Then what happens.. Since you have failure to the blocks.. You told that you dont have RSD ..
I know this might sound confushing.. Iam sure if you look it up on the internet, you might undertand it better....
Michelle
[QUOTE=Shellygod66;3138210]Michelle,
From what I was told. repetitive use of ice freezes the mylenlin. I think thats the tissues that surround the large nerve fibers. It causes something like freezer damage to the myelin nerves. Then what happens is you develope sensory loss and pain do to permanent damage to the large nerve fibers. This is was aggravates the RSD. I also heard yo can have failure to nerve blocks because of the damage that can be done.. Then what happens.. Since you have failure to the blocks.. You told that you dont have RSD ..
I know this might sound confushing.. Iam sure if you look it up on the internet, you might undertand it better....
Michelle[/QUOTE]


Ice does do damage if you use it a lot and especially if you keep using it with RSD. BUT.....there's always a but.......after only 6 months with RSD the nerve endings and other things in there are permanently damaged never to be repaired as well.

Failure to respond to a nerve block is because the pain is Sympathetically Independent Pain or SIP at that point. That is why someone who ends up getting a block too late may not get any relief at all. Those who may get some relief, even a short time, from a block still has SMP or Sympathetically Maintained Pain.

Now damage to the nerve endings can be done by getting an exessive amount of blocks. Most doctors have realized this and it's why a lot of them will now only give 4-6 in a series and refuse to do any more. It's only for the safety and well-being of the patient.

Most doctors also have learned this much, well most of the time, and if you fail to get relief from the block will still diagnose you with RSD because they understand your pain has gone SIP. The docs who rely on a block to say whether you have RSD or not......aren't very educated on RSD and it'd be best to find another doc asap, IMO. It's the same with a bone scan. Just because it comes back negative, doesn't mean you don't have RSD. It just means that the RSD hasn't affected your bone density yet.

Hugs,

Karen
[QUOTE=SherriSLC;3138182]Hi, this is Sherri...unfortunately, the pain showed up last night--some in my right wrist (the broken one) but more in my left hand, wrist, all the way up my arm and even in the back of my shoulder. Have you heard of this? Is my body "referring" the pain elsewhere? Thank you so much for the advice about the blocks before and after surgery. (Would I now need to get them in both arms?) I hope that the doc I see on Tuesday for the second opinion will know about RSD and will refer me to someone who can diagnose it before we do the surgery.[/QUOTE]

Go on a search engine and do a search for rsd and blocks before surgery. This will give you stuff to read up about it. I'm not entirely sure about the whole thing myself seeing as I've never faced surgery with RSD. I'm not sure how they would do it, but IMO, I'd say they need to cover both the arms so it doesn't spread.

I hope as well you will see someone who knows about this. If you find any useful articles on the reputable sites, don't be afraid to print them out to show the doctor. You have to be the advocate for your own care.

It could be "referred pain". I'm soooooooo hoping that it's nothing much, a sort of hope for the best thing here. *Gentle Hugs* Wait to see the doc and see what's said before anything else.

I'll be thinking of you and wait to hear the results of the doc appt. I go see my doc tomorrow too. :D

Hugs and calm hugs,

Karen





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