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!