I thought I had neuropathy for a long time, turns out I have erythromelalgia. Burning feet. Biggest thing that has helped me is a specific laser treatment that uses the avicenna laser. I tried Klaser and others but they did not work. I think many people are misdiagnosed with neuropathy since many doctors do not know what EM is. My neurologist doesn't know what it is but admits after reading my papers that it sounds like I have it. I quit using her.

Laser has been my life line.

bluesfan, I wanted to add that if you put your feet in water,use plastic bags to cover your feet or the water will eventually break down your skin, get infections, cellulitis, and so much worse things.

I also have auto immune hashimoto and believe it caused my EM.

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!

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).

I hate to ask such a bazaar question, but I've been diagnosed with SFN, no biopsy, but based on symptoms. Large fiber and muscles okay. When. I go the bathroom, doesn't matter which, both my feet begin to burn and then as I go, the burning gets less and once I'm done, the burning in my feet are gone. If I stand in same position or sit in same position, no burning, only when I'm using restroom. Anyone have an idea? Is this something totally separate of SFN? People think I'm nuts, but it happens every time.

I've been dealing with burning/tingling for over 9 yrs since hip replacement. I know it's nerve damage and don't have to go to docs to tell me that and what kind. I have learned a lot here and working with Dr.. Google

Grape Seed Extract which I've been taking for 25 yrs soon I know has helped my issues.

Topricin for Pain is what I favor topically and especially for feet and wear socks all the time. It contains 11 homeopathic solutions and some directed to Nerve Pain and Damage.

Vicks Salve and ultra tiger balm are two other favorite topicals.

Franincense oil is a wonderful pain calming oil.

I've posted a lot here and some of what I've posted have helped me. Does this ever go away, probably not, but it does become manageable.

How did you get the diagnosis of erythromelalgia? What tests were performed to aid in the diagnosis?

It's interesting so many continue to go for a diagnosis...as far as I'm concerned, we know when we have nerve pain, tingle, burn. That's neuropathy. The docs will prescribe drugs and then one deals with the side effects of the drugs, and then the issues withdrawing from the drugs. A major vicious cycle.

Another member is talking about the overload of histamines in the body and what to do to get those down. Look at that info, it's not new info but so forgotten. I swear by Vit C and Grape Seed Extract to lower histamine issues.

As for topicals, I forever talk about how valuable Topricin for Pain is in my life...makes my feet and knee etc feel like day and night..