Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

I have (not offically but will be getting tested) chronic erythema nodosum (still have the bruises on my shins from my last flair up a few months ago)
And have recently found out I may have EDS (need to travel for a geneticist to test me bc I live in a medical desert).
But thank you! This is helpful to know to ask.

Many years ago, I was diagnosed with Pyoderma Gangrenosum. Before I was healed from the deep holes in my legs, I got huge hot bumps all over my forearms. Turns out it was Erythema Nodosum. I have not had any flare up with the EN for years and I take no meds. for it. The only info. I know about it is from research online.

I have had erthyma nodusm for 2 years now, it just stays, does not come or go. I have had 2 biopsies done both came back with same results. At this point i am nervous that i have something more serious. Is there a specialist for this other then dermatologist?

I had it years ago. Since it’s a sub category of arthritis, a rheumatologist diagnosed it right away.
Good luck!

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!

I was finally diagnosed with hEDS . Ive been in pain for 16 years after a bad femoral head break. But hEDS makes sense finally and my flares are
Tough and im tired of being on drugs but they have allowed me to do things instead of cry.

I have had EN for almost 30 years now. I was diagnosed my senor year of high school with a biopsy by a dermatologist when I missed weeks of school because of bone aches, fevers, and large raised red patches. My doctors did not take it seriously or offer any relief back then so over the decades I have had to figure out what works for me. I sometimes even forget to let let me current GP know since they don't often take it as seriously as I think they should. I seem to get it about every few years when I get too run down or stressed. If I catch it early before the spots form (I can tell now when it's coming on: feverish, achy, throat almost hurts, ghosts of old pain bumps, there is just a feeling I associate with it) if I take a bunch of immune supplements and take a day off work to sleep all day I can usually head it off. Elderberry syrup with zinc at high dosages along with an echinacea/goldenseal 400mg or so several times a day often gets rid of it for me. If the bumps have time to form it's too late and I can only hope to take ibuprofen and rest and wait out the 2-4 week healing phase which for me is mainly on my arms and legs and accompanied by pain, sensitivity to everything, bone aches and light fevers. I have learned to live with it but I'm very grateful to those who have shared their story on here as no one in my family (several dr and nurses!) or anywhere has really taken it seriously and as you all know how debilitating it can be.