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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Jenna,
It's always sad to hear of someone so young dealing with RSD. From everything I read in your post even though your doctors may have different philosophies about treating RSD you are getting the standard treatment for it. It's a shame you can't get a block. Is you PMD afraid you'll be allergic to the marcaine used in the blocks?

It sounds like your PMD is on track with the medication choices. Unfortunately it is not an exact science and is often a trial and error situation for a while. I always thought that vicodin and percocet were the same or very similar. It could be subtle differences in the proportions of the codeine and acetaminophen. Probably a pharmacist could answer that question. Narcotics can be used in RSD, but are generally not the first choice. Usually a antiseizure drug and a tricyclic antidepressant are used first, with narcotics only being used for breakthrough pain. As you know, narcotics can be habit forming.

The therapies your ortho has described are really good. I hope you are also getting some PT. The meds and therapy are the first choice in getting the RSD into remission. Blocks, meds and therapy would be next. Then other things like SCS and pumps. 18 does seem young - other healthboard members are young and might have good insight for you on this matter. Personally I think it is important to get it under control and keep it from ravaging your life and potentially spreading, so I would have some serious discussions with the pain doc about whether there were any other options for blocks and then if necessary discuss a trial SCS.

I think that I would have the PMD manage the RSD and ask in to stay in close contact with the ortho. That is what I do and it works well. He faxes my notes to my ortho and my PCP after each visit. I still see my ortho regarding the mechanical aspects of my wrist, but he defers to the PMD about anything RSD.

Can RSD just go away? I suppose so, but that's very unlikely, at least not without intervention or a miracle. I think that by the time most of us turn to the internet looking for help we are past the point of a mild case that will work itself out. In answer to the second half of your question, I don't really know - hopefully someone else with a SCS can answer that. I don't see why they couldn't remove it, though.

Any other advice? Don't use ice on your leg, even if it feels burning hot. The blood flow to an RSD limb is already restricted and you don't want to further restrict it. Keep a journal and take it with you to doctor appts. It's easy to forget things with RSD. Educate your family and friends about RSD by printing out information. The Mayo Clinic CRPS document is very helpful with this. The more they understand, the more support they'll give and that makes a difference in recovery.

Feel free to ask more questions. Please keep us updated with your progress.

Take care,
Julie

P.S. I just had a thought. Are you alergic to anesthetics or the preservatives used in them. Talk to your doc about this. We discovered this with my daughter. She was actually allergic to the preservatives. Just a thought.
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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