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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

*Gentle Hugs* :wave: Welcome to our little corner of the web Lisa. I'm so sorry you've gotten this Really Crappy Disease. This may be a little long, so thanks in advance for getting to the end! :D

I have had RSD for 3 1/2 years now, full body, all four limbs. I know how scary it is to hear those three little letters not knowing what they are or what it really means.

This is something with no cure and the treatments include physical therapy to keep the limb moving. Don't baby it if you can help it, as you heal. There is a saying, If you don't move it, You will lose it and that's a bad thing.

NO ICE! That is the biggest thing that needs to be stressed. Ice will hurt more and, at least from my research, possibly help RSD spread.

There are also different meds; pain meds, antidepressents and muscle relaxers, that help with all the different things this beast can throw at us. They usually help, it's just a matter of finding what works best for you. Antidepressents help with any depression one may have but it's supposed to help with pain too. One of those neat little side effects that no one really knew about. It doesn't always help but sometimes it does and it sometimes help a body get to sleep too. There are many of them out there and it's a matter of finding which one may help.

There is also, Topomax and Neurontin. These two meds are anti-epileptics but for some help the burning nerve pain we deal with. Personally, in my opinion, Neurontin sucks! It did a number on me with some major mood swings and I was a beast myself! :eek: I think it was Skooze on here that named it NuRotten. *Correct me if I'm wrong Skooze!* I've heard from many that it puts weight on you and the concensus is Topomax is the "drug of choice" because it works, not much in the way of side effects and it helps some actually lose weight! :)

There are sympathetic blocks that can be done to interrupt the constant pain signals you brain and body are dealing with. In the case of legs, it would be a lumbar block, done in the lower spine under fluoroscopy, which is something they call a live x-ray. It allows the doctor to place the needle in the exact spot it needs to be. When done correctly, the block will allow the leg to look normal, be a normal temperature and hopefully allow you to be pain free for awhile. The key to them though is if it works, then get the keep getting the blocks with the hope you'll go into remission.

That is the goal, to go into remission. If you are diagnosed within the first 3 months and get these things done, then the chance of remission is much greater than diagnosis and treatment done later. From what I've read the optimal time is in the first 3 months, some will say up to 6 months. The technical medical articles I've read say 6 months into it the nerves have already begun to change permanently though.

Remission is what it sounds like. Once you have RSD, you have it for life. If you get into remission then you won't have any skin discoloration, pain or other symptoms, but RSD can come back. All it takes is another small injury and there it is somewhere else or in the same place. There are those that have gone into remission but the majority of us don't. Usually it's due to the fact most of us get diagnosed to late and have treatment started to late as well.

I know there is an epidural treatment where you go into the hospital for like 5 days and you have a needle in the spine that has a combo of meds flowing in for those days and the goal being for the pain to go wayyyyyy down or take it away completely. I've only heard of others having it done. I have no personal experience with it myself. Someone on the boards who has had it done will hopefully chime in and tell you more about it.

For myself I've had one lumbar block done and it was a disaster. Partly I think due to how my body works and it was done 1 year and 3 months after the RSD had set in. That's way to late. It was nice to have a normal looking leg and a leg that felt normal temperature for a few hours though. If only I hadn't hurt even more than normal I could have enjoyed it more. I think I'm the exception in how I reacted to my block. Only me....only me. *sigh*

There is the SCS, Spinal Cord Stimulator and the Morphine Pump. These two things are usually options looked at once everything else has been tried. Not something you really have to think about in the beginning.

I applaud those with RSD who still manage to work. Most with RSD are unable to work ever and there are those who find it extremely difficult to do so but have to for whatever reason.

*Phew* Ok, that is all my poor brain can manage to think of right now. All the rest of you jump in and add your 2 cents as well and anything I may have forgotten about. :D

Don't be afraid to ask any question that comes to mind. The only stupid question is the one you don't ask. We're here for you if you need to vent as well. We all understand the feelings and the pain as no one else possibly can. I'll keep you in my thoughts and hope that remission for you comes soon!

*Gentle Hugs*

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