Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-18-2008, 09:07 PM #1
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Hey Vic,
Thanks for replying. I take a low dose as I said of Lyrica 3 X's a day but I take 900 mgs of Neurontin 4 X's a day. Before I ever got RSD I had Fibromyalgia & I took an over the counter type of GABA(pentin). I had nooooo idea that it worked on never pain. I was just told it might help the Fibro pain. And to be honest I do think it did. I can't for the life of me remember how much of it I took or from what company I got the GABA from. I ordered it over the phone at first, then from the computer. I will have to try to see if I can find that company. I have traded up in Windows computers since then tho & have no idea where the bookmark is at anymore.

Before Lyrica came to the public, I would take a very very low dose of Gabatril. Now talk about affecting my brain!?!? I would go almost comatose on it. Jack would ask me what was wrong & my answer would be, "I am fine & I love you." over & over he said I would say this to him, then lay down & go back to sleep. This would be on a low dose of Gabatril. That stuff was NASTY & I would only take it when the burning pain reached such high proportions that I would cry & contemplate suicide. I had to take less than what the doctor even prescribed for me to be able to function while taking it. I have never had any problems taking Neurontin at any dose, nor any problems this way taking Lyrica. I was on a higher dose of Lyrica, but I could not stay awake at all. Also the weight gain on it was AWFUL, up to 25lbs I gained & have only lost about 10 of it & that has taken me a year.

The doctor & I both tried to wean me off of Neurontin when I started taking Lyrica, but the burning pain came back like a screaming banshee. It is somewhat like you say, what works is what counts as far as being an adult goes huh? *L* I have fought pain of one kind or another my whole damn life. Starting with what the doctor called 'growing pains' in my legs as a child to RSD pain. Pain from mild to as severe/acute as it can get. So now that I am older & I have a great pain doctor I am NOT going to go around in horrible pain anymore if I can help it. Tolerable pain I will & do deal with, but not horrible. Not anymore.

I agree, what is prescribed for children & what is prescibed for adults should be done very carefully. And monitored very carefully. How it affects adults & children can be very very different. And I know children should not be allowed to suffer from pain either, but pain control for them has to be approached differently. I think that one program then have for children with RSD is great. It retrains their brain pathways & I think for them it would work way better than for an adult. But I do want to order the book, "The Brain That Changes Itself" & see if I can do this for myself. My PM Doc thinks that I would be a good candidate for trying this technique. Anyway getting off the subject.

Anyway, again, take care & I do agree with what you are saying here.

DebbyV
ps I hope I made some kind of sense...............
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Old 09-30-2011, 03:52 AM #2
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Default Growing Pains??

Quote:
Originally Posted by Debby View Post
Hey Vic,
Thanks for replying. I take a low dose as I said of Lyrica 3 X's a day but I take 900 mgs of Neurontin 4 X's a day. Before I ever got RSD I had Fibromyalgia & I took an over the counter type of GABA(pentin). I had nooooo idea that it worked on never pain. I was just told it might help the Fibro pain. And to be honest I do think it did. I can't for the life of me remember how much of it I took or from what company I got the GABA from. I ordered it over the phone at first, then from the computer. I will have to try to see if I can find that company. I have traded up in Windows computers since then tho & have no idea where the bookmark is at anymore.

Before Lyrica came to the public, I would take a very very low dose of Gabatril. Now talk about affecting my brain!?!? I would go almost comatose on it. Jack would ask me what was wrong & my answer would be, "I am fine & I love you." over & over he said I would say this to him, then lay down & go back to sleep. This would be on a low dose of Gabatril. That stuff was NASTY & I would only take it when the burning pain reached such high proportions that I would cry & contemplate suicide. I had to take less than what the doctor even prescribed for me to be able to function while taking it. I have never had any problems taking Neurontin at any dose, nor any problems this way taking Lyrica. I was on a higher dose of Lyrica, but I could not stay awake at all. Also the weight gain on it was AWFUL, up to 25lbs I gained & have only lost about 10 of it & that has taken me a year.

The doctor & I both tried to wean me off of Neurontin when I started taking Lyrica, but the burning pain came back like a screaming banshee. It is somewhat like you say, what works is what counts as far as being an adult goes huh? *L* I have fought pain of one kind or another my whole damn life. Starting with what the doctor called 'growing pains' in my legs as a child to RSD pain. Pain from mild to as severe/acute as it can get. So now that I am older & I have a great pain doctor I am NOT going to go around in horrible pain anymore if I can help it. Tolerable pain I will & do deal with, but not horrible. Not anymore.

I agree, what is prescribed for children & what is prescibed for adults should be done very carefully. And monitored very carefully. How it affects adults & children can be very very different. And I know children should not be allowed to suffer from pain either, but pain control for them has to be approached differently. I think that one program then have for children with RSD is great. It retrains their brain pathways & I think for them it would work way better than for an adult. But I do want to order the book, "The Brain That Changes Itself" & see if I can do this for myself. My PM Doc thinks that I would be a good candidate for trying this technique. Anyway getting off the subject.

Anyway, again, take care & I do agree with what you are saying here.

DebbyV
ps I hope I made some kind of sense...............
[/COLOR][/COLOR]
I was wondering about your "growing pains" you experienced as a child. How long did that go on? How bad was the pain? I ask because I also experienced "growing pains" in my legs that started from about the time I was 10 until I was 16 or so. I was relatively pain-free for about 8 years but have had undiagnosed "nerve" pain in my abdomen and back for the last several years. I hate to pry...but it would be interesting to know of your experience and if it is similar to my own.
btw, what does RSD stand for?

Thanks!
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