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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Garry and TUBA, welcome to HB. My name is Cathy, and I have upper extremity RSD due to an MVA on 12-29-02. It *was* just my left hand and wrist until late(ish) last month when it spread on over to the right side, to my entire arm and hand.

This is a great place to come for information, support, to share experiences, or to vent when you are having a tough time/day. Everyone here is extremely helpful and kind, and we all do truely care. You'll get better information here than you will anywhere on the internet (in my opinion, but it's still important to research RSD on the web), as you'll get information from people who've been there, done that, and can tell you about there experiences. What you choose to do with the information is up to you of course, but it will help you become more informed, which is very important when mapping out a treatment plan with your doctor.


Garry, you didn't mention what kind of doc's you have seen or are seeing, or where about you live (you made the statement, "The Dr's where I am from"), and no, you're not going nuts. Many people who have RSD unfortunately do go from doc to doc trying to find a diagnosis, only to have doctors tell them that the pain is in their head, thus making them feel that they *are* nuts.

RSD is a very difficult condition/disease to live with. RSD/CRPS affects your emotions by way of your limbic system, and most of us are on one antidepressant or another, or a combo of them.

TUBA is right, you need to find a good Pain Management doc, and these are usually Anesthesiologists like she said (I think I spelled that right? :) ). You need to get on an anticonvulsant like Neurontin, Zonegran, or Topamax . There are others, but these are the 3 main ones that I hear about? (Correct me if I'm wrong here guys).

I take Neurontin and Zonegran, but I just started the Zonegran since the spread. (I had less side effects with the Zonegran). Other types of meds that some of us may or may not be on are: regular pain medication, anxiety medication, something for sleep, muscle relaxants, and/or antidepressants. Some choose not to take meds until they absolutely can't stand the pain. GENTLE Physical Therapy and moist heat (NOT ICE!!!) help also. No pain, no gain does NOT apply to people who have RSD. Putting Epson Salt in a warm soak will help too. NEVER use ice on your ankle, NEVER let anyone start an IV in an RSD affected limb, and Never let anyone put a blood pressure cuff on an RSD affected limb.

A lot of the medication part of treatment with RSD is trial and error and it sometimes takes a while to get the right combo. A lot of the meds take a week or several weeks to get into your system.

It's important that you research RSD as much as you can. The better informed you are, the better you can make informed decision on your treatment plan with your doc. Remember though, YOU, NOT your doc, has the final say with what you want to, or don't want to do/have done. If you are not comfortable with something, DON'T do it. Don't let your doc make you feel that you have to have something done simply because he is a doc and says you ought to/need to. That's hogwash. It is his job to inform you of your options, it is your job to choose which options you choose to go with. That's why researching RSD is very important.

TUBA... what kind of surgery? I had a hysterectomy in 1994 that left me with 3 pinched nerves that ran down my right leg and both groins, and I think that that is when my RSD really started, or rather, when my sympathetic nervous system went out of wack. I did recover, though I couldn't walk for pretty much 3 years, and it was 4 years before I was able to get back into the work force, but I was able to. I hope this for you both, and I'll be keeping both of you guys in my prayers.

Sincerely,
Cathy





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