Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

Hello Everyone,

Many of your stories sound familiar. I was diagnosed with lupus in 2001 at age 17 after a severe flare up of erythema nodosum, along with pericarditis and various other symptoms. At the time my rheumatologist didn't call it EN, but over the past year EN has been added to my diagnosis, and we are currently waiting on sarcoidosis blood work to confirm that as well.

Last summer I had my EN biopsied by a young doctor, and it was a painful experience. They didn't go deep enough to get enough fat cells, and the biopsy was inconclusive. I'm having another flare again now. Last week, I went to a more experienced dermatologist who was able to confirm the EN without a biopsy, by just looking at my "spots" as I call them. The nodules are painful before they are visible, and they gradually appear on my lower legs first. They start out as small bright pink/red dots, then grow in size & firmness. They get larger, dark and bruise-like, then eventually (with treatment) they fade out like a bruise. It often takes several weeks for the spots to completely fade even after the pain & swelling goes away. I always fear they will scar, but so far I have not experienced scarring.

When I have flares, I take prednisone. I have not been able to tolerate the Plaquenil. I also use naproxen for the pain, and otc Prilosec to combat the gastro issues. My dermatologist recommended coated baby aspirin for the pain this time, and I am giving it a try. After using aspirin for 2 days, I think the naproxen does a better job with the pain. Rest & elevation help me through the work day. Cold compresses and Epsom salt baths can be soothing in the evenings.

My heart goes out to all of you experiencing EN. Thank you for sharing your stories. It is comforting to know I am not alone. I am fortunate to have a team of doctors working to help me understand my situation, but I know it can be frustrating to have friends, family, and even doctors tell you that nothing is wrong when you are in pain and know something is not right.

Kindly,
SJ

I've had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr's in New York, many of whom saw my welts but still thought most of it was psychosomatic. It's crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I've been off gluten ever since and now I'm a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

Thank you for this post! I had strep throat January 2016. Treated with antibiotics, but 3 days later I ended up with severe leg pain that went up both sides of my shins. It felt as though I had blood clots all the way up to my groin. I had a hard time walking as the pain was so severe. Off from work for 3 weeks. Multiple doctor visits with little direction except it could be a virus's that would resolve with time. I had a MRI of my lower back to rule out spinal cord issues. At one point they felt I had rheumatic fever (because of the 2 nodules that popped up on my legs) and put me on 1000 mg. Of aspirin 3 times a day to protect my heart, but this caused a permanent humming in my ears. This also increasing in intensity when my legs flare. I was seen at the Mayo Clinic,for a second opinion, and was thankful to have a diagnosis of Erythema Nodosum and told with rest it would resolve on its own in 6 weeks to 3 months. I continue to have pain upon waking and going to sleep mostly. Probably deal with the pain all day, but am distracted enough to not pay attention to it. Pain is at a 2 most of the mornings/bedtime and I have dealt with it, but there are times when it flares and pain is at a 5. I also have psoriasis on the back of my head and ears. I have also seen rheumatology, neurology, dermatologist, audiology, and internal medicine. They have done MRIs of my legs, X-rays, hearing tests, biopsies if temporal arteries,( as I also have headaches), in addition to multiple lab tests. Immune blood markers were initially elevated for 3 months after strep but have been normal since. My was to take take ibuprofen or naproxen when bad enough. These drugs also incease the humming in my ears and so I only uses them when it is not tolerable. I have quit following up with providers as I feel it must be something I have to live with. I am thankful for all of your comments as I am glad I am not alone. From your comments I plan to try the gluten free diet just to see if it helps at all. I am wondering if any of you have had this humming in the ears? Wondering if that is related in any way?

I've had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr's in New York, many of whom saw my welts but still thought most of it was psychosomatic. It's crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I've been off gluten ever since and now I'm a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!