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Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)
Autoimmune Diseases | Last Active: Feb 5 3:57pm | Replies (97)Comment receiving replies
I have had Erythema Nodosum for over 7 years. Its chronic and never goes away fully. As soon as some of my knots heal, others form. I run fevers almost daily and have no energy. The pain is something I have learned to live with but life is very frustrating because of EN. I currently take Celebrex and it has given me some energy back but my knots are worse now than they’ve been in a long time. I have been tested a million times for different things with no luck. The most frustrating part of this is that nobody can relate and not many people understand because I don’t look sick. I wish I had the answers for this but it seems like there are no answers.
Replies to "I have had Erythema Nodosum for over 7 years. Its chronic and never goes away fully...."
What was the rash called?
Hello, my first outbreak with EN was in Sept. 2008. Yes, I went to see a dermatologist, and no known cure. My legs use to get so swollen that they looked deformed, and of course very painful. I started to put aloe vera gel for about 1 year now, and it has helped me alot. Yes, I do get the small bumbs, but they dry up in about 2 weeks and never get anywhere as bad as they use to. And yes I use to get alot of itching also. On a scale of 1-10, 10 being the worst, I use to be a 9. Now I would rate this at 1 or 2. Please try the aloe vera gel, it's cheap and easy to use. I put it on my legs in the A.M. and at night. Sometimes I forget, but if I start to get bumps, I definitely put it on. I wish you all the best!
Hello, @controlagent86 -- welcome to Mayo Clinic Connect. That is quite a journey with the Erythema Nodosum. Quite amazing that your itching used to rate a 9 on a scale of 1-10, and now it's at a 1 or 2. Wonderful. Glad the aloe vera has helped you so much. Thanks for sharing this tip.
Hoping that here on this thread you can meet some of the members like @oregongirl @jellybean16@jgodby10 @kgoodwin9 @jellybean16 and others, and that they may also share any tips they've discovered.
Has the leg swelling come back at all, or has that also diminished?
Hello, the swelling has not come back. Like I said earlier, I still get the occasional bump, but it doesn't itch, and there is no pane. When I do get a bump, the area only itches if I forget to put on the aloe vera, but I put it on right away and the itching goes away within a few hours. Before I tried the aloe vera, the itching use to be terrible. I would scratch so much that I would make my leg bleed. I prefer the gel compared to the raw plant that I tried. The gel is just so easy to use.
I forgot to mention that I bought the aloe vera gel at Target. It is very inexpensive, about $5.00 per bottle. It is approximately 16 oz. per bottle. The container is a clear pastic. It is something like 98% percent aloe vera, and I believe it has no alcohol. If anyone is interested, I can get more info. from the label, just ask.
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With my RA, I have a rash that we are trying to keep under control. The rash is not contageous or so they say. I have lives with the rash for years. Doctors did not know what to do. Well, my Rheumatologist recognized the rash. It begins as a small pimple and eventually has a center of white...looking like a blackhead only white. I have had a prescription cream now for about 4 months. I am down to maybe two small spots. I can't take hot showers as it will spread the rash. No scrubbing. When it is gone, I plan on taking a long hot shower. But, we have to stay on top of this all the time.