Hello! I have a gut feeling I have EM. I have the classic symptoms after doing my own research. I had a very big life changing/stressful event happen in June '24. My symptoms started in Aug '24 and got progressively worse in Nov '24. I realized then that this was more than a stress response. It is impacting my daily life. I don’t like to leave the house because I dread a flare up and it’s uncomfortable. My current symptoms are: I have become heat intolerant/very sensitive to heat. Wearing shoes/socks/slippers triggers flares in my feet, blow drying my hair and/or cooking causes a flare in my hands, taking showers causes my body to feel like it’s burning on the inside, wearing clothes causes me to feel very warm and sweat, wearing a winter coat causes me to sweat and again, feel like I’m on fire, I sweat profusely at night while I sleep even though I sleep with my feet outside the covers and wear shorts and a tank top. I don’t feel like I’m having hot flashes, if that makes sense. Sometimes I will feel warmth in my lady parts, as embarrassing as that sounds. I work from home. I can be sitting at my desk and feeling chilly but I will notice my armpits to be dripping in sweat. Makes me feel so gross. I have seen a neuro. She wants me to get an MRI to rule out MS. My insurance denied it twice. I had blood work done. I am negative for Lupus and Lyme’s. My B vitamins are all in range. A1C and glucose are normal. My vitamin D, Iron and Ferritin are VERY low though. I’m hesitant to have an iron infusion because I read on reddit posts that people have had increased symptoms of EM after having an iron infusion. I want to add that I was supplementing with Iron tablets between Aug and Nov of last year and my symptoms did get worse. Even more of a reason I’m nervous to have an iron infusion. I saw a vascular doctor who said this is not a vascular issue. My neuro isn’t sure what is going on. I have an appointment with my primary this coming Wednesday. I am open to trying anything with the exception of oral medications. I will use them as a last resort. I already take meds for cholesterol and anxiety. I am very sensitive and have a lot of side effects to meds.I feel like no one can help me and I feel lost. Any thoughts/feedback are welcome and thanks so much in advance!
Riley,
Sounds like it might be. Like you, I’m very sensitive to many meds. I’ve done a lot of work to reduce my anxiety including working with a homeopath, who recommended a remedy called Secale Cornutum, 30c. It’s slow, but it’s helping me. I don’t have as much pain. I take two tablets every other day. It may need to be different for you, depending on how homeopathy work for you.
For anxiety, I’ve done some Somatic energy work. There are quite a few options for that sort of work to calm down our nervous system/vagal nerve, some in person and some on-line.
I hope you’re able to find something that will calm what you’re experiencing.
Hi Riley
Your symptoms are far wider and more intense than mine which were of the hot red feet variety, maybe some facial and hand symptoms. I tried a variety of prescription creams,gabapentine, ketamine etc which was all a very reputable pain specialist here in Toronto had to offer. No positive effect. I ran across “Bob’s Protocal” which consists ironically of mildly warming feet in warm water for 20 or so minutes before bed. Thats it! I thought, well nothing to lose there and no meds involved why not give it a try. Bob warns that the first few nights were difficult and they were. Even worse than usual but…the days got immediately better and, over the course of a few weeks, the nights did too. Within about 6 months I was pretty much free and stopped the protocol which was a mistake as some of the symptoms have come back. I have gone back on it and things are better again. I think Bob said he was on it for a year and a half. You can find more info on YouTube. Bob is a modest fellow who just happened to find something that worked and wants to share it. There is also a group following this protocol called Fight Fire with Fire.
Hello,
Thanks so much for your response and feedback. I am all for alternative/complementary options. Meds don’t mix well with me. Sometimes I can’t even handle vitamins. I’m so glad the homeopathy you’re taking is helping. What a blessing! What exactly is somatic energy work, if you don’t mind elaborating? I do work with a Naturopath and is considering doing homeopathy with me and trying Pulsatilla. Thanks again for your response.
Hi Alexander,
Thanks for your response and feedback. I have heard of Bob’s Protocol but haven’t looked too much into yet. I will though. Thanks again!
Somatic energy work is working with the nervous system to calm it down, focusing on the vagus nerve and the fight/flight syndrome. Being in “flight” mode 24/7 isn’t a good thing and many of us have been/are.
Here are links to on-line somatic/nervous system healing sites that my integrative doc shared with me. One may resonate and others not.
Primal Trust: https://www.primaltrust.org
Gupta Program: https://guptaprogram.com
Annie Hopper’s DNRS: https://retrainingthebrain.com
Help for Sympathetic Nervous System: [https://www.heartmath.com]
Safe and Sound Healing Program: The Safe and Sound Protocol Listening Therapy | Unyte](The Safe and Sound Protocol Listening Therapy | Unyte)
Thanks so much for sharing these links! I will be looking into them!
I’m really sorry to hear about your suffering. I only have EM in my feet, lower legs, hands and face soi have no experience with the rest. I does sound like EM though. I found a Doctor who specialized in EM but I’m sure he’s retired by now. Most teaching hospitals will have some knowledge. Trick is finding a Doctor familiar with it. Get diagnosed, then have him work with you PCP to find a protocol that works for you. I’m sorry to say though, this is not a disease that can be managed without oral meds. I take Nexium, Salsalate(an aspirin based NSAID), and Celebrex. The combination works for me. I still have flares occasionally, sleep with my feet out from under covers and can only wear flip flops.
Hi Riley, your condition is way more extensive than mine. But, let me tell you what I have done to almost completely eliminate symptoms. I got EM in 2012, while undergoing treatment for prostate cancer. It just affected my feet, and especially the big toe on my right foot. The feet would get red hot ; the big toe would tingle and throb. It affected my sleep. I went to several doctors, who didn’t have a clue what it was or what to do, other than prescribing pills. Then, one doctor, who had some other past patients with similar symptoms and did some research, identified EM as the likely cause. He didn’t know what to do about it. So, I did some experimenting. TENS turned out to be very effective. I place the electrodes in the area of the big toe and tried different settings, until I found the location, intensity and program that worked. Nowadays, I do a 20 minute TENS treatment about once every couple of weeks. And, I haven’t had any of the pain and discomfort I used to have. All I can say is, it works for me! I have since found out that chiropractors are making a lot of money using TENS on patients with EM symptoms, who come to their office for treatments. Most people don’t know that you can purchase a TENS unit for less than 50 bucks at most drug stores. I got mine on Amazon. I hope this helps any.
Connector, should I try my TENS machine during a flare-up, or is anytime ok? How often to start?
Suzanne,
I use the machine when I feel a flare up is coming. I’m sure you get a sense for that. By using it at that point, it interrupts the flare progression. And IMMEDIATELY calms it down. As soon as the TENS cycle is done, you will get immediate relief. You may have to experiment where the best location is, the intensity, and the type of pulsing to use. Use the highest intensity you can stand. I found it works best for me on the first massage program. If it works for you, you may use it more frequently in the beginning, but as your nerves become more desensitized, you will need it less and less. I started using it every couple of days; now once a month maybe! I’ll be praying for you!
Hello,
Thank you for your response. I am trying to find a doctor that has experience in treating EM. I’m having a very hard time doing so. I went on the EM Association website and found a few dr’s near me. One was willing to help me but doesn’t take insurance and a consult costs nearly $1,000. Another dr no longer treats patients and only does EMG’s. The other one, who also does research in EM, is retiring. Fantastic, right? I do have an appointment with a dr from that site but it’s not until SEPTEMBER! I can’t believe it’s this hard to find a dr that can help me. My PCP has heard of it but has no idea how to treat it. I have called a local neuros by me and don’t have experience either. I feel hopeless, honestly. I just want answers as to what exactly is my body doing and why and how I can help it. I’m happy to hear your combo of meds work for you! 
Thanks so much for your response and feedback. I’m glad to hear your symptoms are almost gone! That’s so encouraging. What exactly is a TENS machine? I will certainly look into it! Thanks again!
A transcutaneous electrical nerve stimulation (TENS) unit works by delivering small electrical impulses through electrodes with adhesive pads attached to a person’s skin. It helps treat period pain, arthritis, fibromyalgia, and, in my case, symptoms of EM. The electrical impulses flood the nervous system, reducing its ability to transmit pain signals to the spinal cord and brain. It’s fairly inexpensive ($35-75), and is safe if used as specified. PT’s have been using TENS units for years to treat a variety of ailments.