Quote:
Originally Posted by SFNgirl
Oh, and, the cold is a terrible trigger for me. I wear wool socks and slippers everyday, cannot even have my feet and ankles in the cold air, even inside at room temp. Air conditioning vents are horrible. I am actually much better in the heat. Do either of you get toe and finger discoloration? My toes periodically turn bright red, like a fiery stripe across top of foot. Sometimes more of foot too. And finger tips go from white, to deep purple. Lastly, no prognosis from my docs, just say they don't know since they don't know the underlying cause, but have led me to think it won't go away.
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My forearms get really red, but that's about it. As far as medication, I'm taking 100mg daily of Lyrica right now, and that's it. I didn't think higher doses were helping, and I don't want to take medicine just to take it. I'm not taking anything for sleep either. My symptoms are very bad during the day but even worse at night, so it's hard to get much sleep. From what I've read, agree that opiates don't seem to help much with nerve pain, so I really don't know where that leaves us. But I can't imagine dealing with this forever. And it's very worrisome because my symptoms have worsened over the last month or two, and it's been a year since this suddenly came on and turned everything upside down. I just ordered R-ALA, Benfotiamine and acetyl--l-carnitine supplements. Maybe they will help a bit. I tried R-ALA and Acetyl for about a month at the beginning of this but stopped because I didn't see any impact. Maybe they need to be taken for several months before making a good assessment. One thing I need is a good pain mgt doctor to coordinate with the neurologist. My neurologist is basically trying to do everything herself, and she needs some help. But again, I don't know whether there are actually any viable pain mgt options for this.