I’m new around here. I was diagnosed with EM about 6 weeks ago after maybe 10 years of daily burning foot pain.
I had sudden onset of severe back pain about 4 years ago. I had two cycles of steroid injections for the back pain which apparently caused my diabetes. And after that every doctor said the burning foot pain must be diabetic neuropathy even though I had normal HbA1C levels prior to the first steroid treatment and even between the two treatments. Sigh.
It was only when my mother asked how my legs got sunburned (as I was in the midst of dunking my feet into ice water) that I put two and two together and thought the redness might be related to the pain. I had just never made the connection before. After all I previously was living on a tropical island and was out in the sun a lot so sunburns had been a somewhat regular thing with me.
Vascular doctor Bruce Gray in Greenville, SC diagnosed me right away. My hand turned bright purple during that first appointment and that combined with the burning pain that was relieved by cooling confirmed the diagnosis.
I’ve been on mexiletine since diagnosis and that seems to help.
Hello Iggy… You are so fortunate to have the vascular doctor diagnose you so fast! I am so happy for you! Most of us go through years searching for a diagnosis and treatment, as you probably already know. Does the Mexiletene work well for you? I’m thinking about trying it for my flares… when my feet take off and get hot, red, burning my legs and ankles show large veins standing out, too… Perhaps the Mexiletene will help me… I’ll talk it over with my osteopathic doctor, who is my general doctor also… I’m glad you posted here and look forward to hearing more from you about your experience, both the diabetic factor and neuropathy also. The neuropathy seems to be moving up my legs now, but maybe it’s the EM… I’m afraid I might be heading for autonomic neuropathy and need to find out what to do next…
Yes, the mexiletine seems to be helping. I forgot to take my meds before going to work a couple days and my feet were burning terribly those days.
I’m taking 150mg twice a day. Doctor said he is happy to keep me on it as long as it is helping. He encouraged me to try weaning off it once pain has been controlled a long while. I’ll give that at least a few months before considering it.
Sounds like it might be worth talking about mexiletine with your doctor. I’m not sure if it helps a more general autonomic neuropathy, but I don’t think so based upon its presumed mechanism of action. At least if it would help get your EM pain under control it might make clearer what needs to be done about any neuropathy you might be having due to other causes.
Good luck with your journey!
Hello from South Carolina to you, too! Glad to have a local onboard-- good luck in your journey!