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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Jenna. Welcome to HB. I am so sorry that you have RSD. When did you start with the symptoms? What kind of injury and surgery did you have? 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, as I am sure you've been able to tell while reading through our old posts. You'll get great information, better here than anywhere on the internet in my opinion, as you'll get information from people who've been there, done that, and can tell you about there experiences (but it's still very important to research RSD on the web). 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.

Julie, as usual, gave you good information. RSD is so complex, which is why they changed it's name to CRPS (complex regional pain syndrome). There is no rhyme or reason to it, and no-one knows why one person's RSD spreads to other parts of their body while another person's doesn't.

You asked good questions, and you seem very intelligent in the way you are trying to take charge of and become informed about your condition. That is terrific, be proud of yourself.

"Which doctor should be treating RSD?" I would let the PM treat your RSD. Many of them specialize in the treatment of it. He can prescribe the pool and desensitization therapy, as well as your meds. BUT, if you do decide to see both doctors, make sure that each doctor knows *exactly* what the other is doing, and what meds are being prescribed to you.

"I am in NY are there specialists that treat just RSD?" I am not in that area, but I am sure that there are several that do. There may be a Mayo clinic up there that can help you? Do a search on the internet and see what you can come up with. I am sure someone on this board might know of someone.

"What is the difference between vicodin and percocet?" Percocet is Oxycodone Hydrochloride and Acetaminophen. Other brand names are Endocet, Roxicet, and Tylox.

Vicoden is Hydrocodone Bitartrate and Acetaminophen.
Other brand names are Anexsia, Co-Gesic, Hydrocet, Lorcet, Lortab, Maxidone, Norco, Zydone.

"Is 18 too young to get a scs?" That is a tough question. It is also a personal choice question. If I were you, I'd try to find out which anesthetic you reacted to, and how you reacted. If you know this information, it might be possible for you to get blocks. (i.e.: If you were having surgery, and they were putting you to sleep, they would not be using marcaine to do that, so it might be okay for your doc to do marcaine injections. Also, it might be possible for you to have epidural infusions instead). I would look into it, to see if there is a chance at having other options.

"Can RSD just go away?" My PM has told me in the past that he has had a few patients that had their RSD "just go away." He said that it is important to use the affected limb to try to stop atrophy, and that, basically - this is not verbatim, but it is close, that when these patients tried to resume as normal a life as they could, it took their mind off of the RSD, and after a while, it went away. Is this true? Beats me, but I hope that there is the possibility that this could happen.

"If that happens and you have a SCS in do they remove it?" I don't know for certain, but I would want mine out. But then you have to remember that surgery can trigger RSD, and you already have it (RSD), and even though it is in remission, you never know what will happen should you choose to have the surgery to remove the stim. This is another personal choice question.

"Is it true narcotics should not be used in RSD?" I don't think so, and neither does my PM, but there are those that do believe that. I am thankful to be able to take something that makes it a little easier to get through the day.

"any other advice?"
*NO ICE like Julie said.
*Warm soaks with epson salt, and/or a parrafin wax machine for acute flare-ups.
*GENTLE physical therapy. Don't let them push you to the point where the pain gets bad. That won't help you, it will hurt you.
*Use your foot! Walk, stretch, do something (just don't *over* do it). Prevent atrophy.
*Hit the internet and research as much as you can so you can make informed decisions regarding your treatment.
*Remember, 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.
*Print out some of the articles and poems and letter that you find, either here, or elsewhere on the internet. Share them with your family and friends. try to help them understand RSD, so they can help you.
*Come here and share your experiences, both highs and lows with us. Vent when you have a bad day. It's good to talk with other people who truely understand what you are going through. If a person does not not have RSD, then they will never truely understand.

I hope I was able to help you.
Sincerely,
Cathy





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