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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Pitboss,

Find the best RSD doctor and PT possible, as soon as you can. If you haven't had RSD for very long, a stellate ganglion block (or series of them) could work wonders.

Neurontin is a tough drug, I have been on it for a while and I'm starting to hate it. Other anti convulsants that work in a similar manner (that many on this board talk about) are Lyrica and Topamax. I've tried the Lyrica and I found it worse for me than Neurontin, but you may tolerate it better.

Like I said above, it's critical that you find a really good doctor really fast. PT is important, too. A lot can happen with RSD in the span of just a month or two, especially when newly diagnosed. Are you close to the Cleveland Clinic? I am almost certain that they have a very good team of doctors there that specialize in RSD. Others on this board might know more about that....Or try googling it.

Good luck, Sandy
[QUOTE=Sandy325;3877400]Hi Pitboss,

Find the best RSD doctor and PT possible, as soon as you can. If you haven't had RSD for very long, a stellate ganglion block (or series of them) could work wonders.

Neurontin is a tough drug, I have been on it for a while and I'm starting to hate it. Other anti convulsants that work in a similar manner (that many on this board talk about) are Lyrica and Topamax. I've tried the Lyrica and I found it worse for me than Neurontin, but you may tolerate it better.

Like I said above, it's critical that you find a really good doctor really fast. PT is important, too. A lot can happen with RSD in the span of just a month or two, especially when newly diagnosed. Are you close to the Cleveland Clinic? I am almost certain that they have a very good team of doctors there that specialize in RSD. Others on this board might know more about that....Or try googling it.

Good luck, Sandy[/QUOTE]
Pitboss,
I very much agree with Sandy -- Use your other insurance and get treated. I'm on Lyrica, Cymbalta, Trileptal (another anti-convulsant) and sometimes Norco for pain.
It is difficult for me to manage my fear sometimes but I'm seeing a therapist to help with that. None of us know what the future holds, but I've learned to live day by day, sometimes hour by hour. It is what it is, and that's how it is. We have this stuff for the remainder of our lives. We can always hope for a remission and that would be wonderful. All of us react differently to a medication and all of us react differently to the PT, and all of us react differently to the RSD itself so it's very strange stuff.
You can google University medical centers -- Maybe they would have somebody. Here in Southeran California there's only 3 RSD specialists. One here in SD, one at UCLA, and 1 at Loma Linda University. I've also seen a neurologist and many times they're familiar with RSD. Sometimes Rheumatologists have experience too. The important part is to get treated cuz then you have an increased chance of having less damage caused by the RSD. Do you have other insurance? My RSD is not w/c -- Mine is from a surgery that wasn't done properly but I can't get him for malpractice since there was no malice. It's ok because my husband and I went and saw him recently and made closure. He tried to help me but just didn't have the expertise needed for that particular surgery.
Must run for now, try not to be too afraid ok? There are ways to help lessen our fear. Talk to friends, come to this board cuz we're all here to help you 24/7 and we very much care about each other. Also, you can try those visualization CD's -- My girlfriend has stage 3 breast cancer and they helped her alot. I have a husband of 27 years, and 2 daughters. I work 15 hours a week in a wonderful special education classroom and sometimes working gets tough for me, but I love this job and this darn RSD isn't gonna take my job --
Take good care of yourself and find some good medical care for yourself -:wave:
Deb





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