Not a confirmed diagnosis, yet

Hi, thanks for accecpting me on the group. I do not have a confirmed diagnosis, yet, but when I was having a "flare" I had a regular appointment with my cardiologist, and he commented when he saw & felt my hands that he believes I have Erythromelalgia (and also sent that with records to my primary care). However, my primary care doctor feels that "It's too rare of a disease" for me to have. I have had issues with my hands & feet for a little over 2 years, and my ears for as long as I can remember (I'm 41), they are mainly stress related, but hot & cold temps bring them on also. I live in the Knoxville Tennessee area and am currently searching for a new primary care doctor. I also have been diagnosed with Fibromylalgia, around 6 years ago. I have had a problem within the last 8 months or so of low potassium, and wondered if anyone else has this problem. I do not take any diuretics with my blood pressure medicine, and haven't changed dosage, or brands of bp prescription in 3 years, so I know that isn't causing the potassium issues. Thanks again for accepting me, I look forward to exploring the site.

Hi Mimioftwins and welcome to the group! I have not heard of low potassium being associated with erythromelalgia.

Since this is such a rare disease, it's common for doctors to be unsure if you have it. My primary care doctor said It would

almost be impossible for me to have but still referred me to a rheumatology office where they diagnosed me on the spot.

My rheumatologist even said I was the 2nd case she had ever seen in her entire career, that's how rare this is.

The scariest part is not knowing what you have, so I hope you can get a confimed diagnosis ASAP!

Hi Mimi, what a strange reaction from your doctor - just because it's rare you can't have it. I would switch to another doc, too. My doc referred me to a dermatologist when I showed her my red, burning, itching hands that surprised me one morning (2 years ago). I found EM on the Internet before I had an appointment with the dermatologist but she then confirmed it. She had seen 3 other patients with it before me. I live in Virginia and thought maybe a neurologist could be of some help. But all he had to offer was an antidepressant because I had told him that others find relief taking that kind of medication. He had never heard of EM before. My cardiologist (had Pericarditis when EM first started) didn't know about it either and we did a test for autoimmune disorder which turned out negative. So, I don't seem to have any other issues - Pericarditis is cleared up in the meantime. I try to stay in cool temperatures, don't walk too much or exercise and use fans or frozen gel packs to cool down in the evenings and at night if I have to. At age 70 and retired it is easy to do - I am also lucky that my symptoms seem to be very mild compared with others. Good luck to you.