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Hi everyone! I am new to the forum. My symptoms started in January 2016. I noticed my toes turning bright red and warm but didn’t think much about it. Come summer time last year whenever I was in the sun my hands, feet, arms, and face would immediately turn bright red. I started to take pictures of myself because of the strange presentation. I was having other neurological symptoms at that time so I reached out to my neurologist. He didn’t know what it was and referred me to a rheumatologist. I saw the rheumatologist and she said that it looks like a sunburn. I asked how can I get this sunburned while only in the sun for a couple minutes. She didn’t have an answer. I then saw a dermatologist and he could not help me. He prescribed me a few creams for dermatitis. What I have is clearly not dermatitis! 3 doctors, 3 different specialties and no answers. I began to just live with it and not seek anymore help. In the last 6 months the pain has gotten significantly worse. I’m continuously flaring. I’m red, hot, and swollen in my feet and my hands when I get up in the morning and until I fall asleep at night. The only relief I get is from elevation of my feet and resting of my hands. Very minimal activity flares my hands and feet. Good news, I have an appt with a doctor who’s name I got off of the TEA list. She is not to far from where I live. I see her in two days. I’m hoping she can at least diagnosis me and start me in the right direction. I know it’s a process of trial and error to find what works and I’m hoping she will be willing to give it a go.
I do suffer from several other chronic medical issues: Narcolepsy(diagnosed in 2013), Dysautonomia/POTS(2014), Gastroparesis(2015) and Small Fiber Neuropathy(confirmed by skin biopsy 2016). I’m not sure how all of it ties together but I won’t give up until I do know.
Thank you in advance to everyone on the forum. I don’t feel so a lone in this journey. Thank you for being here.
I am pleased that already you don’t feel alone we have all been through that I think that until coming here we were desperate as nobody seemed know what was going on and it’s so difficult to explain how it feels well it was for me. The doctors would ask what sort of pain it was sharp, aching etc., the only thing I could describe it as, which is funny what one doctor said to you, it felt very much like really bad sunburn in a way.
You are certainly not on your own either going to lots of different specialist and non of them having any idea what was wrong. You just have to preserver until you find someone that does know. The way somebody listened to me was that I printed out the page “What is EM” and that made a huge difference so maybe an option when you go to the next doctor.
I am not sure about other things but Small Fibre Neuropathy is certainly one of the causes of EM.
Good luck and I hope you will find things on here that at least help to relieve your symptoms.
Hi there, Sheltilife, Thank you for responding to my post and for the suggestion of the print out. I will definitely bring that a long with me next time. I did see a physician who is familiar with EM. She seemed interested in me and what I was going through. She did say that EM is a diagnosis of exclusion. That she needs to exclude other possible causes for my symptoms before she can diagnose me with EM. She also stated that the previous people she had seen with EM have the whole foot effected. For me my toes always flare but I do get symptoms up to my ankles at times. Same with my fingers and hands. She wants to order a lot of blood work but wanted to see some blood results that I already had done. I emailed those to her and now I’m waiting to hear back. Thanks again!!
Hi all! I haven’t been diagnosed yet but am quite certain EM is what I’m dealing with. The swelling toes that turn dark red started last summer but I didn’t think too much about it because it wasn’t painful…yet. Also at that time I had just been diagnosed with advanced DDD, stenosis on several levels and sciatica was making my life miserable. This year as soon as it got warm enough I started walking in the evenings(I love to powerwalk,but the sciatica made it tough) and the first night my feet hurt so bad. When I took off my socks my oldest son told me my toes looked like sausages they were so swollen,red and felt like all my nerves were firing at once. Each night since has been a repeat. Once the swelling goes down(sometimes quickly, other times it takes all night) my feet just tingle and drive me nuts. I saw my primary doc last Friday and she ran a bunch of blood work to rule out autoimmune issues. Everything was normal. She is now out of the office for 2 weeks so I’ve been unable to tell her about discovering EM and my belief that this is what’s going on. I hope she can recommend where to go next. What type of Dr should I see next?
I would visit a rheumatologist. I finally got diagnosed with EM last week, after 5 years, at the Mayo Clinic in Rochester. They specialize in EM. Although it was a dermatologist who diagnosed me, rheumatology would be my suggestion and is another specialty I’m doctoring with as well. Hope this helps, goodluck!