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Old 08-29-2018, 02:12 PM
dogwalker dogwalker is offline
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Join Date: Jul 2013
Location: Vancouver, WA
Posts: 103
10 yr Member
dogwalker dogwalker is offline
Member
 
Join Date: Jul 2013
Location: Vancouver, WA
Posts: 103
10 yr Member
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Quote:
Originally Posted by Tinglehand View Post
Did your muscle pain come before, after or with the neuropathy? Did the Plaquenil help with the muscle joint part of your problem? Where was your neuropathy and what are you taking now if anything?

When I took the Plaquenil I had RA antibodies and it was muscle / joint related.

Thanks for responding.
Sorry for the delayed response; it took a while to find my old records. My muscle pain (in legs; mostly thighs) started suddenly about 1 1/2 years into my SFN journey. I also had elevated CK (indicative of muscle damage), and EMG showed chronic nerve damage. I started on plaquenil 3 months after that, and I took it for 3 1/2 years. Never noticed any difference on or off. My symptoms are really variable though.

One thing that may have helped me is R lipoic acid, which my neurologist recommended last year. I'd never tried it because it sounded from this forum like it was mostly useful for diabetic issues, which I don't have, and burning pain, which is minimal for me. After a month my severe muscle pains went down from an average of 15 incidents per month, to 6 per month, and after a few more months, to just 2-3 per month. I had never gone through even one month of such drastically reduced muscle pain in the 4 years since it started. I was about to post my experience here when my hair suddenly started falling out and I stopped the RLA. Although I knew from the forum that it can interfere with biotin in the body and I'd been correctly using supplemental biotin all along. In summary, I took RLA for 6 months and have now been off it 2 months. The muscle pains haven't returned yet, so I can't be sure at this point whether it was responsible for the drastic pain reduction, but it would be some heck of a coincidence otherwise.
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"Thanks for this!" says:
Tinglehand (08-30-2018)