I have been having some minor “flare ups” over the last few years. My flare ups are tingling/numbness in the finger tips, toes or feet that then progress into light redness and some swelling. Swelling in the fingers feels like a puffy infection. Swelling in the feet feels as if I have a big stone bruise. I have had three terrible flare ups (one I am dealing with right now). The redness and swelling led to intense “burning” sensation in my foot. This condition seems to rotate daily between feet and hands on both sides of my body. Most times it lasts a day or two but this is the third time that it has been a week or more.
I used to think I was allergic to some sort of food (pork, sugar, alcohol) or had gout. I went to my PCP which then led to a rheumatologist, dermatologist and neurologist. I had a biopsy done by the dermatologist and lots of blood work. Nothing came back conclusive but I do remember the dermatologist asking if I had a sensitivity to heat or cold. I didn’t think so at the time but I guess I’m not sure. I do have an obsession with foot comfort. My wife always has thought it’s funny because I cannot find a comfortable shoe or sock. Right now I tend to wear toe socks and wider forefoot shoes for work but I always go barefoot or with flip flops outside of work.
I am an avid runner since age 8 (37 now) and swear that lately my running has been a cause for issues in my feet.
I know I need to get back to the dermatologist but I guess I just wanted to get some feedback from some others that know for sure they have EM.
I have redness associated with the affected areas but it is not dark red like some of the photos I see online.
Do you all think this sounds like EM? I feel like nobody believes that this is real and that I’m just whining about minor irritations. I can really be debilitating.
Hi CHFL,
Welcome to Living with EM.
It certainly sounds like EM. Please don’t be discouraged by doctors as most of them have never even heard of it. In fact I had to show my dermatologist this website and he admitted that he didn’t know about it!
Normally EM is very much affected by warm temperatures. As you will see in other discussions there are loads of tips to keep cool.
It took me around 10 years to be taken seriously!
Have you looked round all the discussions I just thought it might help you personally decide. There are various causes of EM as secondary, but there is also primary.
Good luck.
Sheltielife.
Basically there are primary and secondary EM. The difference is that primary it’s in your genes that you are likely to get it.
There are also secondary cases due to other illness e.g. peripheral neuropathy, which they said for years was the cause of mine, but mine is down to rheumatoid vasculitis. There are lots of other things as well.
I have always said that unless it’s primary if they find the cause and treat it there is a chance it will go away. That’s certainly the case with me as I have had infusions to treat my rheumatoid vasculitis and my EM is far better.
Have your vitamin B12 and D levels been checked recently? They should be in the upper half of the normal range or you may be deficient. For B12 there is a gray area between 200 - 500 pg/nL where traditional doctors may say it is normal but actually neurological damage can occur.
My EM (among other things) was caused by a B12 deficiency which was a result of pernicious anemia (B12 is needed to maintain nerve health as well as making red blood cells and DNA). Unfortunately my diagnosis was very late and I’ve suffered permanent nerve damage as a result. So don’t delay in getting these tested. Don’t supplement these until you’ve been tested or results may be skewed.
Are you vegan/vegetarian, been taking an anacid like Prilosec for a long time, or had gastric surgery? Those are particular risks for a B12 deficiency. B12 is found only in animal products: meat, eggs, dairy. You need stomach acid along with an enzyme made in the stomach (called intrinsic factor) to pick it up from food. Those with pernicious anemia lack that enzyme and need B12 from shots.
Thank you very much for the suggestions. I’m going to check my levels. I am
not a vegetarian but we only eat chicken, beef or fish once (maybe twice) a
week.
My feet only get dark red once in a while. They are often lighter pink. Sometimes my pain and burning are horrible and my feet are barely red at all. When that is the case, I think the burning and pain might be the things they have found in skin biopsies of people with EM. Things like capsaicin. There are foot soaks you can use to help neutralize those chemicals. One uses turmeric but stains your feet yellow. But somewhere on this site I read of another foot soak that works but doesn’t stain. I don’t remember the main ingredient though, sorry. But the turmeric really helps me.l, and I had some right in my kitchen.