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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.





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