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Dear Karen and Desi,
I have had an internist tell me RSD never goes away and that I should be on some type of medication to keep the nerves somewhat protected. On the other hand, I had a neurosurgeon tell me to take nothing and let the brain figure out how to heal itself. I have been on a rollercoaster ride for the past twelve months just trying to really sort out what is wrong and how to best "maintain" my nervous system.
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It's the unfortunate part about rsd. It never does go away. Even if you go into remission, it's still there and can come back again at any time with or without a "new" injury.
The neurosurgeon is full of bullhockey. LOL Your brain is just as confused as your nervous system with the overwhelming load of pain signals it's receiving.
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I can feel the RSD wanting to spread to my right side. The pain in my ulnar nerve is getting so much worse and my little finger keeps going numb just like it did on my left before the surgeries.
How does this happen to a person? I went in for a simple ulnar nerve release and still one year later I have such serious health problems from this and not even the doctors can agree on what I have let alone a treatment program.
I have to say I have traveled to see a doctor for this in both Chicago and Cleveland and they did not hesistate to diagnose it as CRPS II due to the ulnar nerve entrapment.
Ladies, I can't thank you enough for your input to this post. I thought I was going nuts when out of nowhere my heart will beat wildly or I will start sweating down my left arm only. I really thought I was just developing a general anxiety disorder or something. Yet I never had any of this before that first ulnar nerve surgery and RSD diagnosis.
How do we know what meds are best? Will any of them reset the sympathetic nervous system?
Lisa
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I'm so sorry to hear your right arm ulnar nerves seem as if they're going. There's no rhyme or reason why rsd happens from a "simple" surgery or any other "simple" injury. I slammed my knee and had a broken kneecap.
One very important point on surgery. Though you don't have rsd in your right arm, you don't want to have surgery on it either because it could very easily spread to your other arm from the surgery. Most any rsd'er doesn't have surgery of any kind unless it's absolutely necessary and unavoidable. Oh, no ice on your rsd limb ever! :-)
Nice to know you're not going nuts or losing your mind! :-D
As for meds. It all depends on your body. We all react differently to all of the meds out there. It usually takes a combo to keep things under control.
Antidepressants help some people with the pain and it also helps them sleep, like Elavil.Then there is Neurontin, Lyrica, Cymbalta and Topomax. There are a lot of people who take neurontin and do fine with it, but I reacted badly.
Cymbalta gave me horrid stomach pain but other people take it and do fine. Topomax a lot of people do well with as well. It's one I can't take because a side effect is weight loss and I'm already very, very underweight.
Lyrica is what I take. It's done fantastic for me and other people, again, haven't reacted well to it at all. It has helped my pain just a little, but the reason I started taking it was to get rid of the numbness in my legs and it has done that. Some unexpected benefits of it have been it stopped my night sweats completely and has helped to cut back on other sweating I have. It stopped the electrical zapping I've always felt from rsd.
The only other meds I take are baclofen, for the muscle spasms and jerking of my limbs. I rarely have any jerking episodes since I began taking it. I take norco for the pain.
It's all a matter of trial and error to find which one works for you and at what dose it takes to get things under control. I take 10mg pills of the baclofen 2 times a day and take 100mg of lyrica 1 pill at night. You start at a low dose and work your way up.
Hugs,
Karen