Over the past few months I’ve developed symptoms that suggest I have EM or secondary EM. Hands burn, feet burn, face, neck, and lips burn especially after eating carbs and after exposure to temps above 70. I will see a neurologist for nerve conduction tests tomorrow.
I have been unable to break a sweat (except for my armpits, which sweat even while I’m cold) since October despite being very warm while exercising and I can feel myself radiating heat. I have to keep my body as cold as possible and even use a spray bottle of water to regulate my heat. I’ve tried to force a sweat (bicycling with a layer) and it made my symptoms much worse for about 4 days.
I have reduced sweating in my extremities during neuro testing which is indicative of SFN.
One thing that oddly helps me specifically for exercise is antidepressants / cymbalta. They usually have a side effect of sweating so maybe help my trunk sweat more. When I tried going off (cymbalta), I could not exercise.
I have night sweats most nights on cymbalta.
Sweating changes seem to be common in EM. Probably part of an autonomic dysfunction. A lot of EM is thought to be a small fibre neuropathy. Your experiences sound unpleasant if not interesting. Personally I’ve always sweated a lot with exercise and this seems to have reduced somewhat although I find I don’t run as I used to (chronic plantar fasciitis) as well as weight bearing aggravates the feet burning discomfort. I’m doing free weights & cycling. May get back into swimming. Air quality has been affected by the extreme conditions/ bush fires down under.
My nerve conduction studies were normal, don’t be surprised if yours are too. My various neurologists were stumped. I self diagnosed.
I’ve been digging further into excluding other rarer secondary causes eg Fabry disease- gene test just back negative, relief as its X linked & that would have had potential implications for my daughter, sister & her kids.
Awaiting further tests back from Germany. Not yet had SCN9A done but will likely request that if nothing further turns up.
Looks like you’ve been diagnosed super fast, how did that happen?
Thank you all for sharing your experiences. I really appreciate it.
Stan: I am self diagnosed based on the descriptions I could find. My Neurologist agrees but I am reluctant to stop searching because I had a two week period without any symptoms.
I’ll post a detailed list of my symptoms and triggers later this month so that others can let me know if it sounds familiar.
Hi, there! I was first diagnosed with EM and then later, via a punch biopsy given to me by a neurology department, with Small Fiber Neuropathy, Autonomic Dysfunction. The nerve damage identified either caused damage to my sweat glands or sweat glands are missing in certain places - except for the sweat glands on my face and scalp (of all the embarrassing places - who wants to sweat on her face?!). Anyway, just beware nerve conduction tests are often normal in cases of EM and SFN because the nerves tested are of “long fiber length.” So I wouldn’t be deterred by normal nerve study tests (at least the kind I’ve submitted to twice - the kinds that send jolts up your arms). They don’t preclude the SFN, which is often accompanied by autonomic dysfunction - which often includes anhidrosis and other disorders of the sweat glands. I hope you find answers and a firm diagnosis with treatment protocol!
I have anhidrosis as well. Mine affects my entire body from mid chest down. And everything above that level just POURS sweat to try to compensate.
I presumed the anhidrosis was related to some back pain I am having since the anhidrosis starts at the same level as the back pain. Sounds like if other EM patients are experiencing anhidrosis then maybe its unrelated to the back pain.
I have an initial appointment with a neurologist soon. Might have another set of studies coming from the sound of things.
I’ve been pretty silent on this forum because of the complicated nature of figuring out what is/went wrong starting about one year ago. I can now sweat to a certain extent but it is not what it used to be. I’m also retraining my body to sweat (maybe it works maybe it doesn’t) by keeping a wind breaker on in hot situations when sweat does happen. Some days I can’t break a sweat so I just take it easy. I’ve empirically found a set of foods that I can eat and it helps keep things under control (no gluten, no dairy, no seasoning, no peppers). The doctors put me on monthly IVIG because they found certain antibodies in my system that they think are causing my neuropathy. Who knows if it is working or if it is a placebo. This is a strange new world for me.
Best of Luck and feel free to reach out if you want more info.