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Old 02-08-2014, 09:32 PM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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Kirky, you are still on a relatively low dose of Gabapentin, aren't you? Therapeutic doses are about 1800-2700 mg daily. It still doesn't work for everyone even at that, but you usually won't know if it works at lower dosages.
Dr. Smith has has good results on the burning with R-Lipoic acid. I have started that and have noticed a difference in the burning skin on my thighs, it seems to help.
I do think that you get used to some of this. It doesn't stop being painful but it stops being alarming.
I also think you probably have CMT, and neurologists often diagnose it very casually as if it weren't a really tough thing to deal with. They can't treat it so they drop it on you and walk away, at least mine did. No one can tell how it will progress, but rapid progression may be followed by some stability for a while. It does inevitably progress.
You are, understandably, looking for a quick tun around with this, but it isn't likely to happen. You may achieve some little improvements, you may stabilize for a while, but the best thing you can do is come to terms with the reality that you have a chronic illness. There are a lot of books on the subject, some are quite helpful. You must also decide if you want your doctors to be more aggressive in pursuing a diagnosis, which may always be elusive, and in treating your pain.
Yes, the cold makes everything worse. It has been a rough year for many of us.
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"Thanks for this!" says:
Dr. Smith (02-09-2014), Idiopathic PN (02-09-2014), Kirky (02-09-2014), Kitt (02-08-2014)