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.

@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.

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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

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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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