Hey everyone! My EM started when I was about 6 years old. It started in my ears and over the years slowly progressed to my feet, hands and sometimes my face. Over the last 4 years every time I get in bed my whole body burns. My legs bother me the most but it has only been when I lay flat down. My skin doesn’t turn red but my skin is noticeably hot to the touch. It keeps me up all night long. Today for the first time just my knees got red and started burning. This is the first time this has happened and I wasn’t laying down when it happened. Just wondering if anyone else has had similar experiences. When you google EM 99% of the info you find related to feet and hands so just wondering how many of you have EM effecting other parts of your body or if this may be a separate condition. I will attach a couple pictures for reference.
Just a note I have tried gabapentin, lyrica, beta blockers, antihistamines as well as some topical cream treatments with zero relief
Hi there, I totally understand what you are experiencing. It’s not just your hands and feet my EM has attacked my legs and knees and head and nap of my neck. Cool wash cloths help…some topical creams as well. Gaba did not work for me either. Do you live in the US or Canada . Which doctors are you seeing.
I’m in Canada, which is great because we have free health care. However the only doctor I’ve seen here that could diagnosed me was a rheumatologist. I’ve also seen a dermatologist, allergy specialist, vascular specialist, cardiologist and none of these specialist had even heard of EM before. I’m now working with my family doctor on possible treatments. She’s been doing some research but nothing has helped so far unfortunately
My EM was exclusively at my knees. I never had major symptoms elsewhere. I’m now in remission following mexiletine therapy. As you’ve had EM since childhood, yours is almost certainly a genetic condition associated with defects in the genes that code sodium channels. You should ask your doctor to trial you on the sodium channel blocker mexiletine.
How did you find the side effects? I did mention this to my doctor before but she couldn’t find much information on EM and the medication and said a lot of people don’t handle the side effects well
Side effects were minimal. The benefit from the drug far outweighed the side effects. Benefit was overwhelming.
Your doctor might not be experienced enough with EM, and pain conditions in general, to be making decisions on your behalf. My doctor is an anesthesiologist who specializes in pain management. At my first appointment with him (now over 5 years ago), when I still wasn’t formally diagnosed yet with EM, he said mexiletine was the medication that offered the best chance of success if, in fact, I did have EM. (He had treated EM multiple times prior. I was not his first EM patient.)
It sometimes effects my palms and thighs always at night. The only thing that has given me relief is cyproheptadine, magnesium and aspirin. I take 650mg aspirin daily. If I don’t take it almost every day, my EM worsens. With this combination, I get much relief. I really pray you get relief it is so miserable.
While the Mexiletine didn’t work for me, I also didn’t experience any negative side effects. I’m sure the details of yours and my conditions vary extensively—I hope you try it and I so hope it helps you.
Hi there
I know what you are experiencing.
Started with feet, then hands, now knees. The only thing that has worked for me is cold. I sleep with open windows and a fan. I try not to use ice packs too often
Luckily my GP referred me to a neurologist and he diagnosed EM straight away! Have been working with my GP and doing researching myself.so far keeping cold is the only helpful option which sucks as I love to travel.wishing you the best in 2021
Hi Brookhd
Yup my EM has developed over the knees. It took a few years just on my lower legs and now the knees are almost always affected. I have also had ulcers and flaring on my hands, fingers, ear, and sometimes my whole body overheats, usually when the room is too hot or if I apply frozen ice packs to my lower legs.
You didnt mention amitriptyline. I went through the card on pain relief medications and ended up with amitriptyline. You take it a couple of hours before going to bed, and that’s all - nothing in the day/afternoon. Just the one dose is needed. I am only on 30mg although much higher is common. I do feel a bit sluggish in the morning but it wears off, compared to some others where I felt like a zombie. For me, it improves my sleep.
There was a global meta-analysis of the effect of neuropathic drugs and amitryiptyline came out top.
You also mention starting at 6 years which sounds like the ‘primary form’ (mine is ‘secondary’ to vasculitis). If you are in the UK it might be well worth seeing David Bennett at the John Radcliffe Hospital in Oxford. He specialises in the primary form and is conducting research into it. He may give you a genetic test (all on NHS) to confirm secondary or primary. If you have the primary form, he may consider using mexilitine, which is a heart drug and also has some risks. He doesn’t use it for the seconday form. He says there is some logic to using it for the primary but not the secondary EM. Good luck with it all All best
I have totally experienced what you have described. There are two doctors in Toronto…who from what I have read on this site and another…pioneers regarding this condition…both dermatologists …both at Sunnybrook Hospital. However are not accepting referrals until April 2021. Many doctors have tried to send referrals for me and this is what their office is saying. Try through your family doctor…or another doctor. One is Dr. Scott Walsh and the other Dr. Is Dr. Alhusayen. May I ask you have you ever experienced your scalp being itchy and burning?
Thank you. That is good to know. I live in Newfoundland and there are really no doctors here that I’ve seen that have been helpful so that may be an option
