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@sarahshimek

Ehlers Danlos Syndrome and Erathema Nodosum

I recently saw there are many people with these two conditions. I had EN for 35 years, (diagnosed by a biopsy), and it went away at about age 53. It has been replaced by very sore swollen lumps on my forehead. These are different than the ED on my lower legs. Often they are in my eyebrows but also sometimes high on my forehead. Painful with pressure and movement but like the EN for me, almost no pain otherwise. And unlike the EN they are not red and hot, just swollen and sore. They also go away a little sooner and without the itching and rash. I have not been officially diagnosed with EDS but have the velvety skin and hypermobility. Also have IBS (after 40 years of chronic constipation). I have what seems to be hip dysplasia as I get older (age 61) but have less hip pain and some less diarrhea when I don't eat gluten. Also havn't had a knot on my forehead in the 2 months without gluten. Just wondered if anyone else has experienced those knots on the forehead? Also do you think the EN had anything to do with hormones since it left after menopause?

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Replies to "Ehlers Danlos Syndrome and Erathema Nodosum I recently saw there are many people with these two..."

Hello @sarahshimek, Welcome to Mayo Clinic Connect. Thanks for sharing your experience and symptoms with Erythema Nodosum. You bring up an interesting question about the possibility of gluten being associated with the knot on your forehead. Here's some information I found that may explain it.

Skin and coeliac disease, a lot to think about: a case series: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5786986/
Excerpt – "Multiple erythematous violaceous nodules on the lower leg. … boy presented a 1-year history of an intensely pruritic skin rash located on the trunk, members and face. … Erythema nodosum in association with celiac disease."

Have you tried going gluten free for an extended time period as a test?

@sarahshimek Welcome to Mayo Clinic Connect, a place to give and get support.

35 years is a long time to have had the diagnosis of erathema nodosum.

You'll notice that I moved your question to an existing discussion. I did this so you could connect with members that have gone through something similar. You may wish to scroll through the past comments in search of information and connection.

May I ask where you saw the that many people have both conditions?

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