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.

@jellybean16

Exactly everything you said is exactly the same with me for 3 years now no answers , blood test high deductible rate specialist but no answers I’m do frustrated and yes pains all over lumps all over biopsies no answer accept for Eryethema nodosum , please keep me posted on any answer you get

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I got a biopsy finally after 6 years and they told me I had fat necrosis. We found this out a couple weeks ago. The treatment for EN is the same as fat necrosis.

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@kanaazpereira

Hello @meaghanashely,

Welcome to Connect; we’re so glad to have you join us. I hope you’ve had a chance to read through previous messages @kgjd97 @kety @blossom2016 @beff2468 @stacidaye @sadie_jane @jillianm and others in this conversation.

@meaghanashely, you mentioned that the flareups occur at least twice a year; are there specific times or seasons when you notice that? Besides medication, what else helps you cope?

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Medicine is the only way the will go away. It’s usually durning the spring and towards to fall that I start to get them.

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Hi @meaghanashely,

I’m sorry to hear about your diagnosis; may I ask if you would share a few more details about your condition, as we have a few Connect members who have shared their experience with fat necrosis. With what type of fat necrosis were you diagnosed? Are the symptoms the same as for EN?

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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.

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7 years is a long time to be in pain 🙁 When I first started flaring up, everyone thought I was depressed. No one believed me that I was sick. It was terrible and I can totally relate to what you are going through. I've mentioned this before on this thread, and chances are, you've tried it. Have you ever done an elimination diet? When I avoid gluten, 90% of my symptoms go away. I've heard that gluten and dairy can trigger an autoimmune response. If you haven't already, try going gluten-free. Let me know if it helps!

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@jgodby10

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.

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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.

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@jgodby10

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.

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What was the rash called?

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I am curious to know if anyone has Ehlers-Danlos of any type. I likely have Hypermobility type.

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@jgodby10

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.

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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!

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@jgodby10

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.

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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?

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@jgodby10

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.

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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.

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@jgodby10

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.

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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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@jigglejaws94

I am curious to know if anyone has Ehlers-Danlos of any type. I likely have Hypermobility type.

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@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

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@jigglejaws94

I am curious to know if anyone has Ehlers-Danlos of any type. I likely have Hypermobility type.

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@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.

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@jillianm

7 years is a long time to be in pain 🙁 When I first started flaring up, everyone thought I was depressed. No one believed me that I was sick. It was terrible and I can totally relate to what you are going through. I've mentioned this before on this thread, and chances are, you've tried it. Have you ever done an elimination diet? When I avoid gluten, 90% of my symptoms go away. I've heard that gluten and dairy can trigger an autoimmune response. If you haven't already, try going gluten-free. Let me know if it helps!

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@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.

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