Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

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?

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 was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They didn't even know what it was back then. I spent most of my childhood in bed. I was miserable most of my life, until 9 yrs ago. I moved and went to a new Rheumatologist. He prescribed Methotrexate. The drug doesn't cure this disease, but it puts you in remission indefinitely. I have been in total remission for 9 yrs! It has been a miracle. No side effects, no knots, no pain, no fever, no aches, no fatigue. It's amazing!! Anyone with this disease needs to get to a Rhemotologists and ask for Methotrexate. It saved my life!

I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They didn't even know what it was back then. I spent most of my childhood in bed. I was miserable most of my life, until 9 yrs ago. I moved and went to a new Rheumatologist. He prescribed Methotrexate. The drug doesn't cure this disease, but it puts you in remission indefinitely. I have been in total remission for 9 yrs! It has been a miracle. No side effects, no knots, no pain, no fever, no aches, no fatigue. It's amazing!! Anyone with this disease needs to get to a Rhemotologists and ask for Methotrexate. It saved my life!