1. < Autoimmune Diseases

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.

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sarahshimek | @sarahshimek | Apr 14, 2021

Ehlers Danlos Syndrome and Erathema Nodosum

I recently saw there are many people with these two conditions. I had EN for 35 years, (diagnosed by a biopsy), and it went away at about age 53. It has been replaced by very sore swollen lumps on my forehead. These are different than the ED on my lower legs. Often they are in my eyebrows but also sometimes high on my forehead. Painful with pressure and movement but like the EN for me, almost no pain otherwise. And unlike the EN they are not red and hot, just swollen and sore. They also go away a little sooner and without the itching and rash. I have not been officially diagnosed with EDS but have the velvety skin and hypermobility. Also have IBS (after 40 years of chronic constipation). I have what seems to be hip dysplasia as I get older (age 61) but have less hip pain and some less diarrhea when I don't eat gluten. Also havn't had a knot on my forehead in the 2 months without gluten. Just wondered if anyone else has experienced those knots on the forehead? Also do you think the EN had anything to do with hormones since it left after menopause?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 15, 2021
In reply to @sarahshimek "Ehlers Danlos Syndrome and Erathema Nodosum I recently saw there are many people with these two..." + (show)
@sarahshimek

Ehlers Danlos Syndrome and Erathema Nodosum

I recently saw there are many people with these two conditions. I had EN for 35 years, (diagnosed by a biopsy), and it went away at about age 53. It has been replaced by very sore swollen lumps on my forehead. These are different than the ED on my lower legs. Often they are in my eyebrows but also sometimes high on my forehead. Painful with pressure and movement but like the EN for me, almost no pain otherwise. And unlike the EN they are not red and hot, just swollen and sore. They also go away a little sooner and without the itching and rash. I have not been officially diagnosed with EDS but have the velvety skin and hypermobility. Also have IBS (after 40 years of chronic constipation). I have what seems to be hip dysplasia as I get older (age 61) but have less hip pain and some less diarrhea when I don't eat gluten. Also havn't had a knot on my forehead in the 2 months without gluten. Just wondered if anyone else has experienced those knots on the forehead? Also do you think the EN had anything to do with hormones since it left after menopause?

Jump to this post

Hello @sarahshimek, Welcome to Mayo Clinic Connect. Thanks for sharing your experience and symptoms with Erythema Nodosum. You bring up an interesting question about the possibility of gluten being associated with the knot on your forehead. Here's some information I found that may explain it.

Skin and coeliac disease, a lot to think about: a case series: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5786986/
Excerpt - "Multiple erythematous violaceous nodules on the lower leg. ... boy presented a 1-year history of an intensely pruritic skin rash located on the trunk, members and face. ... Erythema nodosum in association with celiac disease."

Have you tried going gluten free for an extended time period as a test?

REPLY
1 reply
Erika | @erikas | Apr 15, 2021
In reply to @sarahshimek "Ehlers Danlos Syndrome and Erathema Nodosum I recently saw there are many people with these two..." + (show)
@sarahshimek

Ehlers Danlos Syndrome and Erathema Nodosum

I recently saw there are many people with these two conditions. I had EN for 35 years, (diagnosed by a biopsy), and it went away at about age 53. It has been replaced by very sore swollen lumps on my forehead. These are different than the ED on my lower legs. Often they are in my eyebrows but also sometimes high on my forehead. Painful with pressure and movement but like the EN for me, almost no pain otherwise. And unlike the EN they are not red and hot, just swollen and sore. They also go away a little sooner and without the itching and rash. I have not been officially diagnosed with EDS but have the velvety skin and hypermobility. Also have IBS (after 40 years of chronic constipation). I have what seems to be hip dysplasia as I get older (age 61) but have less hip pain and some less diarrhea when I don't eat gluten. Also havn't had a knot on my forehead in the 2 months without gluten. Just wondered if anyone else has experienced those knots on the forehead? Also do you think the EN had anything to do with hormones since it left after menopause?

Jump to this post

@sarahshimek Welcome to Mayo Clinic Connect, a place to give and get support.

35 years is a long time to have had the diagnosis of erathema nodosum.

You'll notice that I moved your question to an existing discussion. I did this so you could connect with members that have gone through something similar. You may wish to scroll through the past comments in search of information and connection.

May I ask where you saw the that many people have both conditions?

REPLY
1 reply
sarahshimek | @sarahshimek | Apr 15, 2021
In reply to @johnbishop "Hello @sarahshimek, Welcome to Mayo Clinic Connect. Thanks for sharing your experience and symptoms with Erythema..." + (show)
@johnbishop

Hello @sarahshimek, Welcome to Mayo Clinic Connect. Thanks for sharing your experience and symptoms with Erythema Nodosum. You bring up an interesting question about the possibility of gluten being associated with the knot on your forehead. Here's some information I found that may explain it.

Skin and coeliac disease, a lot to think about: a case series: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5786986/
Excerpt - "Multiple erythematous violaceous nodules on the lower leg. ... boy presented a 1-year history of an intensely pruritic skin rash located on the trunk, members and face. ... Erythema nodosum in association with celiac disease."

Have you tried going gluten free for an extended time period as a test?

Jump to this post

Thank you, John, for your response. I do not have either DQ2 OR DQ8 copy in my DNA so all testing for celiac (coeliac?) was discontinued. I dont have a deffinate diagnoses for IBS either. I have been gluten free for 2 months now. I have not had a lump on my forehead during that time. (Do you know what they are called?) Diarrhea is better. Less frequent, but yesterday there was a hurricane in my gut again. It always starts with a wave of nausea. Diarrhea very watery
again.
EDS is also sometimes present with EN. (See @kgjd97) I dont know if the gut problems are EDS though. I need help with that most.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 15, 2021
In reply to @sarahshimek "Thank you, John, for your response. I do not have either DQ2 OR DQ8 copy in..." + (show)
@sarahshimek

Thank you, John, for your response. I do not have either DQ2 OR DQ8 copy in my DNA so all testing for celiac (coeliac?) was discontinued. I dont have a deffinate diagnoses for IBS either. I have been gluten free for 2 months now. I have not had a lump on my forehead during that time. (Do you know what they are called?) Diarrhea is better. Less frequent, but yesterday there was a hurricane in my gut again. It always starts with a wave of nausea. Diarrhea very watery
again.
EDS is also sometimes present with EN. (See @kgjd97) I dont know if the gut problems are EDS though. I need help with that most.

Jump to this post

I'm not sure what the lump on your forehead is actually is but it's a good thing it's not there all the time. I wonder if it might be a form of a hematoma? Here's a couple of possibilities.

What’s Causing This Bump on My Forehead, and Should I Be Concerned?: https://www.healthline.com/health/bump-on-forehead
What can cause a bump on the forehead?: https://www.medicalnewstoday.com/articles/326419

REPLY
sarahshimek | @sarahshimek | Apr 16, 2021

I don't believe the lumps on my forehead are hematomas. For one thing they are rock hard (the ER x-rayed my first one but it showed nothing.) Also, they are always different places, they dont come from an injury, and they are not discolored. The EN had a rock hard core too. I'm more concerned about getting my gut problems figured out. I'm not sure a gastrointerologist would even consider a subtype of Ehlers Danlos. Is it a geneticist that diagnoses the subtypes?

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mmcsackett4 | @mmcsackett4 | Oct 20, 2022
In reply to @anisoara "Hi, i’m 32 y.o. I got my first flare up of EN when i was 19..." + (show)
@anisoara

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.

Jump to this post

I have not been given an official diagnosis of EN, after multiple labs including chest X-ray, ct scan, ultrasounds and all blood work. My doctor pretty much said “no more tests needed”. I continue to have flare ups of painful nodules on arms, legs, belly and upper back. Your connection to possible supplements or vitamins caught my attention. These nodules began for me exactly 3 years ago at the beginning of the Covid pandemic, which is when I began using vitamin d, c and zinc with magnesium. I also began using probiotics. I have also considered the correlation. Also considered that I had a severe case of influenza B one year prior and was prescribed multiple antibiotics for secondary infections. Some antibiotics caused such severe stomach pains I had to stop using them. Is it possible it was the antibiotics? I wish I could figure out what triggered this, I am tired of continually dreading a flare up!

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 22, 2022
In reply to @mmcsackett4 "I have not been given an official diagnosis of EN, after multiple labs including chest X-ray,..." + (show)
@mmcsackett4

I have not been given an official diagnosis of EN, after multiple labs including chest X-ray, ct scan, ultrasounds and all blood work. My doctor pretty much said “no more tests needed”. I continue to have flare ups of painful nodules on arms, legs, belly and upper back. Your connection to possible supplements or vitamins caught my attention. These nodules began for me exactly 3 years ago at the beginning of the Covid pandemic, which is when I began using vitamin d, c and zinc with magnesium. I also began using probiotics. I have also considered the correlation. Also considered that I had a severe case of influenza B one year prior and was prescribed multiple antibiotics for secondary infections. Some antibiotics caused such severe stomach pains I had to stop using them. Is it possible it was the antibiotics? I wish I could figure out what triggered this, I am tired of continually dreading a flare up!

Jump to this post

@mmcsackett4 I guess I don’t understand. You still have painful nodules but the doctor says ‘no more tests needed’? Did they find anything with the tests that were done?
Would you consider finding a major medical center or university teaching hospital? Doctors there seem to be more educated than those at community hospitals. That was my exact experience. I was getting very sick and got an MRI. The MRI showed many lesions on my brain that were causing demyelination. NONE of the doctors locally knew what they were seeing! My husband had them contact the university hospital near us for help. To this day, i still go to the university hospital for care.
Don’t try to treat yourself, find a knowledgeable doctor.
Can you find a large hospital near you?

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mariahflyy | @mariahflyy | Apr 25, 2023

Hello! I also have EDS and chronic erythema nodosum. They doctors haven’t put these two things together yet, but maybe they’re related. Been through the same struggle as you.. constant bloodwork and taking prednisone too often.

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mayo99824 | @mayo99824 | Apr 26, 2023

I got erythema nodosum when I was having active Lyme’s disease. When I was 12 and got bitten, my mom told me it was my clumsiness that was why I always had bruises on my shins. At that time, I was treated for Rocky Mountain Spotted Fever and the bruises eventually went away. At age 40, when I developed the same bruises on my shins, I knew I wasn’t suddenly clumsy and I found out about erythema nodosum. I had many other Lyme symptoms as well. I was treated for late stage Lyme and have not had the bruises back.
I also discovered recently that I have celiac disease. I have been gluten free for about 6 months and have seen big changes in my digestive system. I don’t know if any of this is related, but I am finding that everything may be tied to one’s digestive system

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