Hi there, I’m a 23 year old women and while I’ve never been diagnosed, EM is the closest descriptor of what I have been dealing with since I was like 6. When I was a kid it was so bad my feet would burn all night. It was so bad that the skin would just lift off my foot and crack. It was so bad I stayed home from school often because of it. As I got older I out grew it. We never found a remedy for it. For most of my teenage and young adult life it has been just a manageable burning feeling. But in the last two years it has once again worsened. I’m very nervous about it.
Tonight is the worse it has been in years. It feels like my feet are sitting in boiling water almost. Does anyone have any remedies that help them? I have no idea when I’d be able to go to a doctor or if they can even help me. I’m new to this group and to EM in general. I’ve only discovered EM a few months ago and my knowledge is limited. If anyone has advice I’d be so grateful.
I have had most of my life. Nothing helps . Now trialing ketogenic diet used for epilepsy. Seems to be helping at night. check out info here | Ketogenic Diet Therapies
Consultant to The Charlie Foundation - www.charliefoundation.org
I am so sorry about your horrible pain. I see 2 new Rheumatologists and a Neurologist next week, If I learn anything new I will message you! Hang in there!!!
I am so sorry that you are in so much pain! I know how it is. Mine started in my hands and arms, but it is now in pretty much every area you can have a flare. My feet have been really bad lately as well. I have to have a fan blowing on me at all times. You can try lidocaine it helps me some off the time. Sometimes I will use a sunburn gel that has lidocaine and menthol in it and then lay down with the fan pointing at my feet, it doesn’t stop the flare but it helps. Some people have relief with capsaicin cream, it didn’t work for me though. It’s crazy how one treatment can work for one person but make things worse for another person.
I think aspirin works for some people who have the genetic form of EM. I am not sure if there is a doctors list on this site for doctors who see patients with EM. But I know Erythromelalgia warriors has one.
First there are things that help people. Just what helps one may not help or may make someone else worse. So there is generally a lot of trial and error:
- Pain: gaba/pre-gaba, NSRIs like Cymbalta, tri-cyclics like Amitryptiline have all shown some efficiencies in helping neuropathic pain. I’ve taken pre-gaba (Lyrica) for 15 years and it’s helped a lot.
- Channel blockers to slow down over excitability in the sodium/calcium blockers. I take Mexilitine and it’s helped the most of anything I’ve done. It’s a sodium channel blocker. Hard to get a doc to write a script for it though as at higher doses it’s a heart arrhythmia drug. For EM generally work up slowly to 150mg 3x a day. Heart patients take it at a higher dose.
- CBD oil has helped some. Made me worse
- vaso-dilators like Magnesium helps some. Made me worse.
There are other things to try. This is just a short list on things that have helped me. Good facebook groups too. You need to be your own advocate. Read, read, read. And never let anyone say nothing helps. Maybe nothing helped THEM but it doesn’t mean nothing will help you. Just what helps some like CBD, makes others (like me) worse. So anything you try start slow, much slower than a normal patient until you know how it effects you. And subscribe to multiple sites to jump start your learning. Least there are better resources now. 15 years ago the best we had was a yahoo group that might get 25 posts a month. Now there is this site, 2 facebook groups, and probably others I’m not aware of. Dr. Oaklander in Boston, Barad at Stanford, and Dr. Davis at Mayo are people to read up on and follow. I’ve travel 2,000 miles to see Dr. Barad’s pain management clinic at Stanford. Tried a lidocaine infusion and even though it didn’t help beyond what I was getting from Mexilitine, still glad I tried. Lido infusions have put a few people into near or total remission. Mexilitine is pill form of lidocaine btw.
Hello, I’m sorry to hear of your challenges. I’ve struggled with EM for a few years now but I’m on the other side of it. Not totally free of flares but they keep getting lesser in frequency. Finding a good doctor is very important. I found most help from a functional doctor.
I tried sooooo many therapies…topicals and medications. I really think what helped me improve was low dose naltrexone (I’ve been on it for about 18 months) and alpha lipoic acid with biotin (also 18 months). Mine was from an injury so the alpha lipoic acid helped with neuropathic pain better than lyrica or neurontin with NO side effects.
Also, read a lot! I collected this list of options from various resources Hopefully this will help:
- [ ] Low sodium, anti inflammatory diet, juice diet or smoothies
- [ ] Exercise, low impact, swimming to keep blood flow, walk 30 mins daily, chair weight lifting, biking, floor ok
- [ ] Magnesium daily, study at hi dose @1150mg/day
- [ ] Zyflamend - herbal anti imflammatory
- [ ] Weight loss
- [ ] Mark Davis Mayo Clinic
- [ ] Dr. Burke 773-296-3636
- [ ] Dr. Michael Ferrante at the UCLA Pain And Spine Care Center, Santa Monica, CA
- [ ] Cymbalta 60mg
- [ ] Zyrtec
- [ ] cooling, elevating, eliminating humidity, exercising regularly, wearing open sandals or shoes
- [ ] Nortriptaline
- [ ] LDN - amazing results
- [ ] Clonidine
- [ ] Amatryptaline
- [ ] Oxycodone / morphine
- [ ] Tapentadol - norep + morphine? Newer drug for Diab neuropathy
- [ ] Dr Stacey - pain dr in OR
- [ ] Aloe Vera gel at bottoms of feet cooling at night
- [ ] Gabapentin
- [ ] Spinal cord stimulation
- [ ] Ice packs out to dinner for feet
- [ ] Electric bed, legs elevated
- [ ] Propanolol or inderal helps keep extremities cool and cymbalta reduces the pain.
- [ ] Tapentadol - norep + morphine works well for Diab neuropathy
- [ ] 450mg mexilitine ramped up slowly
- [ ] Midodrine compound 2% cream for flares
- [ ] 500 mg acetyl L carnitine
- [ ] Palmitolethanomide capsules three times a day, for flares
- [ ] Every single day I make sure I am up dressed and have something to do. I don’t talk to friends much about my condition and if someone asks I don’t go into it much, just say “up and down”. I don’t want to give the disorder too much air space.
- [ ] 5-7 day continuous lidocaine iv at a pain center.
- [ ] Get a hobby or do something fun to keep mind off it, play upbeat music to improve mood
I also take daily Tumeric supreme pain, vitamin B12, Vitamin C, vitamin D, multivitamin, omega 3 with COQ10. I’m not sure if all or any of those help but I’m not getting off of any as I’m excited to heal and be improving.
I’m also a true believer in prayers. Ask anyone you know that you are comfortable with to pray for your complete and total healing. I really believe the Lord was part of my healing.
Blessings to you!