New to the site - my story in short (i hope)

I am so glad to find a site for EM. It sure feels lonely when it’s not common among the population.

Initially, I had mildly warm feet a few years ago. I had a lot of run-ins with Athlete’s foot so I thought I had gotten it again. So I would treat with anti-fungals, wear sandals as much as I could, walk on cold surfaces, stick my feet out of the covers at night, sometimes sleep with an ice pack next to my feet. I didn’t really think much of it until last year. I had received a treatment for chronic depression called Transcranial Magnetic Stimulation at the beginning of the year. This treatment snapped me out of my depressive cycles and I was finally able to get off antidepressants for the first time in 15 years. As I tapered off of the medication, the warmth in my feet became a burning sensation and then became more intense and happened more frequently and started turning red. By April of this year, it was burning several times a day. I had resorted to several methods of cooling such as cold running water, ice packs, fans, elevation of the feet up a wall at 90 degree angle, Aspercreme, and 4% lidocaine. In February, I had started asking doctors about it. All in short, I’ve been to 2 primary care doctors, an endocrinologist, a neurologist, an internal medicine doctor, 2 hematologists at Mayo Clinic, a neurologist from Mayo, and a vascular specialist at Mayo. I am seeing Dr. Davis in Dermatology on August 10th of this year. I have been relentlessly pushing for answers this year, researching everything online and medical research papers on EM. Out of all the tests I have taken, I do NOT have:

  1. Athlete’s foot
  2. Diabetes - A1C was normal
  3. Thyroid problems - TSH, T3, T4? were normal
  4. Large or small fiber neuropathy - EMG, QSART, Autonomic testing, Sweat tests normal
  5. Vitamin deficiencies or toxicities
  6. Metal toxicities
  7. Liver or kidney problems
  8. sarcoidosis
  9. no cancers (hodgkins, leukemia, lung cancer) - PET normal, cancer blood tests normal
  10. no auto-immune diseases indicated by blood testing
  11. no blood disorders - bone marrow biopsy negative, gene testing negative although I have been having high platelet counts sometimes.
  12. i dont drink alcohol and have never abused it
  13. Lyme disease test negative
  14. Celiac disease test negative
  15. HIV negative
  16. Amyloid polyneuropathy was negative - fat aspirate test
  17. Not on chemotherapy drugs
  18. Negative on all sorts of inflammatory markers (vasculitis, lupus)
  19. Fabry’s test was negative
  20. Porphoria was negative

The only test that has revealed anything was a temperature and blood flow test that the vascular doctor had me do. When my feet are flaring, the temperature of my toes increase around 10 degrees and blood flow increase by 10 times.

My current treatment is small dose Zoloft, which has helped but not gotten rid of it. Gabapentin works 60% of the time, I have to be careful as I get fevers and muscle aches on it. Custom compound cream of Ketamine, Ketoprofen, Lidocaine. I sleep at night with an elevation wedge for my legs and a fan pointed at my feet.

So this is where I am at. The hematologists, neurologist, and vascular specialists all agree that it is Erythromelalgia. I just dont know what is causing it and it is looking more like primary EM the more tests I take. I am still not convinced that it is not my blood. Blood cancers run in my family and EM is known to precede a blood disorder by a few years. Since I have been having bouts of thrombocytosis, I am wondering if my body is stuttering to the start of thrombocythemia. Not sure, but I am very glad to find other people who know what I am going through and I am looking forward to getting support and supporting others!


Sleep apnea?


An unknown injury?

Just some thoughts
Hoping you find some answers!
And get some relief

some blood disorders don’t show up right away

also CRPS?

quite the comprehensive list! good luck!

Thank you! Negative on Lyme and no sleep apnea…

I’m kind of wondering about the blood disorder if it is starting but the JAK2 gene hasn’t switched yet to be noticeable on bone marrow biopsies. Not sure if CRPS was ruled out but the neuro at Mayo said she ran out of ideas to test for so maybe she doesn’t think that’s a possibility. Can’t wait to see Dr. Davis in August though!

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