Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

Posted by kgjd97 @kgjd97, Sep 22, 2016

Does anyone else suffer from Chronic Erythema Nodosum? It's been 10 years since I was first diagnosed with this and each year it seems as if it gets worse. I've seen Dermatologist, Rheumatologist, Immunologist and now a Neurologist. No one has ever been able to figure out why my flare ups come and there is no way to know when it will happen. I've had blood tests after blood tests done as well as biopsies but they only show my platelets extremely high and inflammation, which I already knew about. The worst flare ups came in 2014 and did some kind of damage to my nerves or at least that's what dr's think. For the past 2 1/2 years I have lived with chronic pain in my legs. I've had tests done on my arteries & veins as well as the nerves & MRI's but NOTHING ever shows up. It's frustrating because I know I'm in pain but nobody can figure out where it came from or why its happening. When I do have a flare up its easy for people to see why I'm hurting but they still can't know the intensity of the pain the knots cause. When I'm not having a flare up I still deal with the pain in my legs and then I get how I look fine so how can I be hurting. Even some dr's I've seen can question my pain. It's so frustrating. I'm tired of taking meds when they're obviously not helping. I'm just wondering if anyone else may have some of the same symptoms I do or have any suggestions.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

controlagent86 | @controlagent86 | May 6, 2018

In reply to @jgodby10 "I have had Erythema Nodosum for over 7 years. Its chronic and never goes away fully...." + (show)

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.

controlagent86 | @controlagent86 | May 6, 2018

In reply to @jgodby10 "I have had Erythema Nodosum for over 7 years. Its chronic and never goes away fully...." + (show)

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.

Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018

In reply to @jigglejaws94 "I am curious to know if anyone has Ehlers-Danlos of any type. I likely have Hypermobility..." + (show)

@jigglejaws94, Ha ha! Your @name made me giggle, I love it. How did you come up with that name? My best friend has EDS. I am going to suggest that she sign onto this Connect group. How are you doing with yours? -Terri

Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018

In reply to @jigglejaws94 "I am curious to know if anyone has Ehlers-Danlos of any type. I likely have Hypermobility..." + (show)

@mgmpops44 Have you tried asking the pharmacist? Sometimes providers will make exceptions if your doctor specifies that you absolutely need that dose. Some of my meds needed pre-approval like that.

Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018

In reply to @jillianm "7 years is a long time to be in pain :( When I first started flaring..." + (show)

@jillianm Hi there. My best friend has EDS and Psoriasis. I suggested that she try a gluten free diet. She did and said she had a 90% improvement in her skin and aches and pains.

kmisschuck | @kmisschuck | May 24, 2018

In reply to @beff2468 "So sorry for anyone else having to go through EN. One of the difficulties is you..." + (show)

@beff2468

So sorry for anyone else having to go through EN. One of the difficulties is you are in pain and sickness and you dont look sick. The fever is low grade. Tell others you have an auto-immune disease since most people these days know what that is. Don't waste your breath and energy explaining it because seriously most people dont get it. If you tell them its a type of skin disease, some people think they can catch it. Take care of yourself! Make sure you rest with legs elevated. The beginning of the disease is the worst with weakening, diarrhea, low grade fever, nausea, before the onset of the lesions. No, you don't have a fever over 99.5 but believe your body is sending all of its energy to attack itself and make you better, auto-immune disease. The major way you get over this disease is by resting. Let your family know you need their help. Having it for the first month is purely exhausting and I am athletic.

**You have to keep taking the ibuprofen even when you think it is gone and you're feeling great because it will come back worse with a vengeance if you don't. This happened to me several times when I stopped ibuprofen too early. You can back off the doseage to 400-600 mg 3 times a day but dont take it completely away until you are sure its gone.
I had chronic erythema nodosum which was not recognized yet by most doctors as "chronic" for a long time from 1986 in college to 2002. Mayo was first ones I knew of to do this. I still have written it down on my chart and had doctors tell me there is no such thing, ha! While I could reproduce the articles for them I just nod my head and know that most people are ignorant on this subject. Why? Truly I was told by doctors not much research has been done. People don't die from it if they have been extensively poked, prodded, chest xrayed, blood tested, eye checked, etc., and found nothing else wrong. With my first diagnosis in 1986, my father was a ENT at Barnes St Louis so he took me to his doctor friends, my shoes wouldnt go on because swelling came on so suddenly and I had no meds, anti-inflammatories. A bunch of specialists came into the room, med students, camera man, to take pictures for books. Then they put me on high doses of ibuprofen, 800 mg three times a day. It took about 12 weeks before I started feeling like I could walk without pain. I continued to have this once a year to year and a half for 10 years. I still had 2 lesions on my legs for awhile after recovering that remained there for a few years. I told my dad who again was a doctor, I really thought those two lesions were not just residual bruising and/or permanent joint damage but erythema nodosum still active. He believed me and asked me if I wanted to have a biopsy there. It was in a bad location for a biopsy (still have a scar) but I was game. After the biopsy the lab showed positive results for EN! I felt justified because everyone acts like you should be fine, it's gone. But, I can tell you from this and having this sooo many times, that one or two can remain for awhile. Mine went away about 2 years after that initial. I still have tenderness and discoloration, darkness in that area and in 2 others that is permanent damage. (I have very white skin.) I can run without pain. The biggest way I notice it is if I am sitting on the floor. I can't cross my legs normally.
As far as medicine, best thing is taking non-steroidal anti-inflammatories NSAID consistently 800 mg ibuprofen or naproxen if you can handle that. Dr put me on Naprosyn i.e. Naproxen before it came onto the over the counter market. 800 mg 3 times day. It hurt my stomach badly so I asked to go back to ibuprofen.
As to why you have it, I was tested over and over again first 5 times by specialists for Sarcoidosis, strep throat, lupus, rheumatoid arthritis, etc. Doctors told me after that, unless it was bad, I didnt need to come back. I did get EN again 6 years later ( month after getting chigger bites all over my legs) for the last time in 2001, it was the worst case I had. Lesions all over shins, both upper legs and thighs, and two on forearms. So painful! I couldnt work for 2 weeks. New doctor, dermatoligist, thought maybe I had something like lupus while I told her EN with unknown cause. Ran tests and had a biopsy and findings again were EN. Had me again take ibuprofen nothing else.
I have never posted to a medical site. Hope this helped. Take care! Sending prayers your way!

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I have had chronic EN for the last 17 years, I am a Family Medicine physician and have found myself having to explain it to most new dermatologist or rheumatologist I see as they often have no patients with it or have seen one or two with it who had it bc of birth control pills. I have had every test in the book- colonoscopy , chest X-ray, labs and biopsy and my sed rate, CRP are only abnormal labs. They shoot up every time I have a flare. When I have a bad one- I can’t make a fist and walk like I am 80 years old bc of joint pain and feel like I have the flu, in addition to the lovely red “exquisitely” tender knots. I wonder if any non patient really gets what exquisitely tender feels like. I tell them to run full speed into their coffee table and slam their shin into it, then the next day, palpate it deeply, that is what EN nodules feel like . I think I get respect from my docs bc I am super athletic and outdoorsy and a Doctor so they see the huge change between when I have flare and don’t - hiking and riding horses and martial arts and then I can barely walk for a few weeks. My current flare I have tried indomethacin, steroids and am no better so Tuesday I am back to the drawing board. Last time it got this bad we used orencia which worked. I have also tried plaquenil in the past (didn’t work). I saw another person here who had nerve issues- interesting bc I had autoimmune neuropathy in 2009, it was axonal pattern on my EMG (not demyelinating) with weakness in legs and trunk. Resolved with IVIG. I was so thankful my neurology team got it approved. I was better in a few weeks after treatment. One thing that was also medically relevant was that after the IVIG, I went two years with no EN. The longest I had ever been . I usually get it a couple times a year. I think the IVIG must have also removed the auto antibodies triggering my EN. If IVIG was not so expensive I’d love to try it again for EN. I wish I knew what the trigger was. I’d love to hear anyone else’s stories about things their doctors have tried. I have also done the clean eating , Whole 30 all the way. Just finishing up my Nutrition therapy degree bc I think it is such important part of this.

tara09 | @tara09 | Nov 6, 2018

I have had my first bout of EN, following a strep throat infection, and I have been struggling to get over it. Potassium iodide has calmed down the nodules but I still have aching legs, despite resting. I'm starting to feel like the aches will never go away. Seeing your posts, I am also worried that I will have further bouts of EN. My docs seemed to think it would be a one-off.

mpw311 | @mpw311 | Dec 17, 2018

I was diagnosed with EN about 4 weeks ago and believe my EN began as a result of taking an antibiotic I was allergic too.

The nodules on my legs have never been very painful, just tender, but I have been experiencing severe pain in my joints that is gradually increasing and spreading to all areas of my body. The pain started in just one elbow, and has now spread to both elbows, wrists, fingers, knees, and ankles. It is completely debilitating and I can barely move without extreme pain. The doctors keep prescribing me short term doses of prednisone which helps, but as soon as I stop taking them, the pain comes back even worse.

Does anyone else have a similar experience that would be willing to share?

anisoara | @anisoara | Mar 3, 2019

Hi, i’m 32 y.o. I got my first flare up of EN when i was 19 y.o, and i continued to get them every year since, for at least once a year and up to 3 times a year, sometimes the flare ups were worse than the other ones. I have done all sorts of blood tests, xray, biopsy and no one can find the underlying cause. What has always helped with the pain and inflammation is Aspirin, i would take the highest dose which i think is 325mg 2 tablets twice a day for no longer than 2 weeks, and it definitely helps, but it’s rough on the stomach. On my last doctor visit, i was prescribed SSKI solution, which i started taking .3ml/ 3 times a day, i can’t tell yet if it’s working since my flare ups just started a few days ago and are getting worse by the day and the SSKI i started taking the day before yesterday, so let’s see what happens, but i’m starting as well the aspirin since i’m in some serious pain. It does feel debilitating not knowing what’s causing this to begin with. I have noticed however that everytime i start taking some sort of suplement products that have a lot of different vitamins and minerals in it, it almost like a trigger for my flare up, but I don’t know if that’s accurate, it’s just my personal observation, maybe someone else can notice if they are doing something different right around the time when getting the flare ups, would really like to know. Thank you and hope this helps anyone else with EN.

John, Volunteer Mentor | @johnbishop | Mar 3, 2019

Hello @anisoara, @mpw311, @tara09 and @kmisschuck, I would like to welcome you all to Mayo Clinic Connect. Since there was no response for three of you I'm hoping you can connect with each other to find something that works for you. I found an article that is from 2005 in the Journal of the American Board of Family Medicine that may be helpful.

Successful Treatment of Chronic Erythema Nodosum with Vitamin B12
-- https://www.jabfm.org/content/18/6/567

There is a post earlier in this discussion by @beff2468 that may be helpful to read here:
https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/?pg=1#comment-46294

There was also a post earlier by @jillianm that recommended going gluten free which helped her. Have any of you tried eliminating different foods or going gluten free?

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