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Originally Posted by saraneely
I also have Erythromelalgia and have also struggled to find a doctor that has ever heard of EM. It has taken 5 years to find someone, but I've finally found a neurologist who is younger and, while he has not directly treated any patients with Erythro, he encountered some patients during his residency. He may not know everything, but he asks questions to gain a better understanding of my pain, he takes the time to research EM in depth, and he has reached out to one of the leading experts on the disorder to consult on my case.
What kind of laser treatments have you had that have helped? I would do just about anything to decrease the frequency/intensity of the burning nerve pain in my hands, ears, and feet Also, do you have primary or secondary Erythro?
Thanks for sharing!
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My neurologist recently told me that amitriptyline is one of the best things for burning neuropathy pain. I started taking amitriptyline in 2013. Original pain was burning feet, then transitioned to severe stabbing muscle pain, all of which have improved a lot over the past 2 years. Therefore I started gradually tapering down the amitriptyline and was down from 60 mg to 20 mg per day. At my neurologist visit I reported that, and also that the burning in my feet had returned. I never put 2 and 2 together until she pointed it out. Now I'm back up to 40 mg and the burning has improved a lot. My neuropathy is from undifferentiated connective tissue disease (aka incomplete lupus/sjogrens).