Please help, no one else knows whats wrong

Good afternoon everybody. Please help me, please read my story and tell me what is wrong. I am almost 100% sure it is EM. They doctors have no answers. It started 7 years ago, I had extreme swelling in my right leg, the Dr said it was Phlebitis, he gave me Ecotrine and sent me home. Since then I have been suffering from extreme edema in my feet, legs and face. If I do not take my water pills for a day then I swell up like an elephant. But its not only pitted edema, my legs and feet burn so badly that I am forced to put a bucket of cold water under my table to get some relief, this also happens when I am sleeping. The skin on my feet also turns bright red and/or purple. I have constant pins and needles, or the feeling of firecrackers going off in my feet and legs, at night I have “vibrations” like a cellphone and I cant sleep. If I lie on one side too long then I get severe pain from my hip to my foot so I roll around a lot. When waking from sleeping for about 2 hours, my hands and feet are bright red, swollen and burning like fire. All of this is accompanied by extreme swelling and pain. Water retention pills relieve the swelling but the burning continues, it is almost summer and soon i will have to use by bucket at work. i dont know what to do anymore. Doctors have tested for lupus, auto immune but cant find anything. How to i test for EM, how can i make my life better?


Unfortunately, there is no standardized testing for EM. It is a diagnosis of exclusion based on symptoms. When erythema in the distal extremities is elicited by heat and alleviated by cold and elevation, EM is possible. Other potential diagnoses must be excluded first. EM may or may not involve swelling.

Do you have pictures of your symptoms you’d be willing to share?

I have EM and have had to some degree for about as long as I can remember and I’m 69. It was becoming worse after menopause and I used ice bags to cool my feet. Last year I had to undergo chemo treatments and the EM got worse. My feet and half way up my legs became bright red and I had swelling (I’d never had swelling before). I put my feet in cold water a lot to relieve it but I was also told to put my feet up to relieve the swelling. Can’t do both! Eventually I decided to try a fan. I purchased an oscillating fan probably in October of last year and it’s been running most of the time that I’m sitting down or when lying in bed. The cold water is nice to a point but I read about the damage it can (and probably will) do to your skin so I quit it. The dermatologist I was seeing put me on Hydroxychloriquine and told me to continue it for 4 to 6 months (that was in February). The time is pretty much up so I need to contact them again and see what they think. I was skeptical about the Hydroxychloriquine but after several months I had definitely seen an improvement. I decided to quit it and after a week my feet had begun to swell and feel the numbness that accompanies a flare so I went right back on the medicine. It’s helping again. The trouble with EM is we usually have other things going on at the same time and it makes it difficult for doctors to come up with a solution. It’s also very hard to find a doctor who knows anything about it. I’ve done a lot of my own research and then I try to find a doctor who will LISTEN and let me try something I’ve read about that works for others. I have breast cancer, Lupus, Brachioradial Pruritis, leukocytoclastic vasculitis and Erythromelalgia.

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It could well be EM, there is no test. But I would check out whether the swelling in your legs is from having something like lymphedema .

Everyone of your symptoms sounds like me. I have Ankylosing Spondylitis which is the main cause of all my issues. It affects my hips and yes I have to constantly change from side to side when I sleep due to pain, sleeping on my back causes pain everything in my back. EM is a secondary condition to the AS. I’ve had it almost all my life too but it’s only been in the last 6 years (about the time I went into perimenopause that it became EM on crack. I have AS, EM, Crohn’s Disease & Pulmonary Fibrosis.

FYI - like you, I was pretty sure I had EM but couldn’t get anyone to diagnose me. I finally found a Neurologist (thanks to help from this group) about 6 hours away. He diagnosed me before he even finished crossing the room to introduce himself.

I can absolutely relate to everything which you have said. I also now have a fan under my table to cool my legs and feet as the bucket of water just brought too many questions and stares from everyone else :frowning: I have been tested for auto immune and Rheumatoid, it came back negative, so im still at square one. I have found 3 lumps in between my left and right ribs, just off centre, the doctor said its fibroids, if it doesnt grow larger then i have no need to worry but i dont know if a person gets fibroids there, i thought it was just in you uteris. I wish i could find a doctor who would take the time to stop and listen but that never happens. The same doctor said i have markers of osteoarthritis and prescribed arcoxia. It feels like the blind leading the blind :frowning:

My mom has AS, it is terrible, i wish i could cure the whole world. Neurologists are very expensive and I have tried so many options, Im terrified to spend the money and still not have answers. Apologies for the negativity today, but its not a good day. Maybe tomorrow will be better.

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Even on a mildly warm day, my feet and leg look like this. And added to it comes the swelling. The water pills do not seem to stop it anymore either.

And my veins pop up every where on my feet, is this normal with EM

That looks intense. Has it progressively worsened over the past 7 years? Does it ever stop or lessen? It certainly looks similar to EM.

Its gotten worse, 7 years ago i barely noticed anything. Now its hard to miss, and the diuretics i drink dont seem to work anymore for the swelling. It used to. There arent specialists for EM in South Africa either.

Just wondering whether you have any skin issues – dry, scaly, eczema, etc.

Seenie from ModSupport

Extreme dry skin, and eczema, small itchy water bubbles on my hands but thats not permanent. Extreme dry skin is permanent. If i dont constantly put on hand cream, my hand burn like fire.

Excessively dry skin is not known to be a symptom of EM, so there may be something else occurring causing that.

That sure sounds like EM to me. I would start documenting with pics and how often your episodes are with descriptions each time. Also ask your doctor to refer you to an internist. Hope you find some relief