← Return to Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

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@erikas

@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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Replies to "@sarahshimek Welcome to Mayo Clinic Connect, a place to give and get support. 35 years is..."

I am 80+, diagnosed with EN 45 years ago through bloodwork and a very astute rheumatologist, who predicted I could eventually acquire sarcoidosis in a few years, which is exactly what happened. That showed up on a chest X-ray pre employment and was verified by biopsy. I got the job, and since steroids are about the only remedy, I ‘’politely’’ refused, went on my merry way and just dealt with the varied symptoms as they came and left. I now have had 5 autoimmune diseases. My suggestions are if you are tired, rest; if you have edema in legs, raise them and/ or wear TED stockings, which seemed to help the most, try going gluten free to see if it makes a difference, try just making the best of whatever you are dealt because these autoimmune diseases are quite ‘’trying’’ to say the least! Keep moving, experiment with other suggestions as there may be something which will help you enough to get you through a flare-up, but don’t EVER let it get you down because you are tougher, stronger and worth whatever it takes! Also contact the ArthritisFoundation for educational materials and suggestions, National Jewish Hospital in Denver does research on sarcoidosis and monitor Mayo Connect. Most important, find an excellent rheumatologist who thinks out of the box and trusts you!