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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kim4hope | @kim4hope | Sep 17, 2017
In reply to @kim4hope "Thank you for this post! I had strep throat January 2016. Treated with antibiotics, but 3..." + (show)
@kim4hope

Thank you for this post! I had strep throat January 2016. Treated with antibiotics, but 3 days later I ended up with severe leg pain that went up both sides of my shins. It felt as though I had blood clots all the way up to my groin. I had a hard time walking as the pain was so severe. Off from work for 3 weeks. Multiple doctor visits with little direction except it could be a virus's that would resolve with time. I had a MRI of my lower back to rule out spinal cord issues. At one point they felt I had rheumatic fever (because of the 2 nodules that popped up on my legs) and put me on 1000 mg. Of aspirin 3 times a day to protect my heart, but this caused a permanent humming in my ears. This also increasing in intensity when my legs flare. I was seen at the Mayo Clinic,for a second opinion, and was thankful to have a diagnosis of Erythema Nodosum and told with rest it would resolve on its own in 6 weeks to 3 months. I continue to have pain upon waking and going to sleep mostly. Probably deal with the pain all day, but am distracted enough to not pay attention to it. Pain is at a 2 most of the mornings/bedtime and I have dealt with it, but there are times when it flares and pain is at a 5. I also have psoriasis on the back of my head and ears. I have also seen rheumatology, neurology, dermatologist, audiology, and internal medicine. They have done MRIs of my legs, X-rays, hearing tests, biopsies if temporal arteries,( as I also have headaches), in addition to multiple lab tests. Immune blood markers were initially elevated for 3 months after strep but have been normal since. My was to take take ibuprofen or naproxen when bad enough. These drugs also incease the humming in my ears and so I only uses them when it is not tolerable. I have quit following up with providers as I feel it must be something I have to live with. I am thankful for all of your comments as I am glad I am not alone. From your comments I plan to try the gluten free diet just to see if it helps at all. I am wondering if any of you have had this humming in the ears? Wondering if that is related in any way?

Jump to this post

Thank you so much for this suggestion. I plan to look into it as the pain continues! I haven't committed myself to trying gluten free yet. I just wish I knew who I should see about this as I live in a small town in central Minnesota.

REPLY
lshell | @lshell | Sep 17, 2017

I, too, have suffered with EN for many years, but, fortunately, have never experienced the pain so many have expressed in this network. I started taking two Advil in the morning and one Advil at night before bed about two months ago and have seen unbelievable improvement in the level of inflammation.

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lshell | @lshell | Sep 17, 2017
In reply to @kim4hope "Thank you for this post! I had strep throat January 2016. Treated with antibiotics, but 3..." + (show)
@kim4hope

Thank you for this post! I had strep throat January 2016. Treated with antibiotics, but 3 days later I ended up with severe leg pain that went up both sides of my shins. It felt as though I had blood clots all the way up to my groin. I had a hard time walking as the pain was so severe. Off from work for 3 weeks. Multiple doctor visits with little direction except it could be a virus's that would resolve with time. I had a MRI of my lower back to rule out spinal cord issues. At one point they felt I had rheumatic fever (because of the 2 nodules that popped up on my legs) and put me on 1000 mg. Of aspirin 3 times a day to protect my heart, but this caused a permanent humming in my ears. This also increasing in intensity when my legs flare. I was seen at the Mayo Clinic,for a second opinion, and was thankful to have a diagnosis of Erythema Nodosum and told with rest it would resolve on its own in 6 weeks to 3 months. I continue to have pain upon waking and going to sleep mostly. Probably deal with the pain all day, but am distracted enough to not pay attention to it. Pain is at a 2 most of the mornings/bedtime and I have dealt with it, but there are times when it flares and pain is at a 5. I also have psoriasis on the back of my head and ears. I have also seen rheumatology, neurology, dermatologist, audiology, and internal medicine. They have done MRIs of my legs, X-rays, hearing tests, biopsies if temporal arteries,( as I also have headaches), in addition to multiple lab tests. Immune blood markers were initially elevated for 3 months after strep but have been normal since. My was to take take ibuprofen or naproxen when bad enough. These drugs also incease the humming in my ears and so I only uses them when it is not tolerable. I have quit following up with providers as I feel it must be something I have to live with. I am thankful for all of your comments as I am glad I am not alone. From your comments I plan to try the gluten free diet just to see if it helps at all. I am wondering if any of you have had this humming in the ears? Wondering if that is related in any way?

Jump to this post

I have had the same frustration through the years with dermatologists that I have seen. All just want to treat my EN with heavy prescription drugs, but never address the cause or suggest any changes in diet.

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meaghanashely | @meaghanashely | Sep 29, 2017

My flare ups started when I was in 8th grade, so 6 years ago. I have blood test done as well, and my flare ups are at least twice a year. I take steroids for mine and they’re gone. But when they are gone my legs are still a bit tender

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 2, 2017

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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1 reply
89630208 | @89630208 | Oct 18, 2017

I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They didn't even know what it was back then. I spent most of my childhood in bed. I was miserable most of my life, until 9 yrs ago. I moved and went to a new Rheumatologist. He prescribed Methotrexate. The drug doesn't cure this disease, but it puts you in remission indefinitely. I have been in total remission for 9 yrs! It has been a miracle. No side effects, no knots, no pain, no fever, no aches, no fatigue. It's amazing!! Anyone with this disease needs to get to a Rhemotologists and ask for Methotrexate. It saved my life!

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 18, 2017

Hello @89630208,

Welcome to Connect, we are happy to have you join us. Thank you for sharing your story! I'm really glad you found an answer that works for you and that you came here to share it with other Connect members with erythema nodosum. Happy happy news! Thanks again for sharing.

John

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 19, 2017
In reply to @89630208 "I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They..." + (show)
@89630208

I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They didn't even know what it was back then. I spent most of my childhood in bed. I was miserable most of my life, until 9 yrs ago. I moved and went to a new Rheumatologist. He prescribed Methotrexate. The drug doesn't cure this disease, but it puts you in remission indefinitely. I have been in total remission for 9 yrs! It has been a miracle. No side effects, no knots, no pain, no fever, no aches, no fatigue. It's amazing!! Anyone with this disease needs to get to a Rhemotologists and ask for Methotrexate. It saved my life!

Jump to this post

Welcome to Connect, @89630208, and thank you so much for adding your story to the EN journeys shared by members in this group.
@kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 @stacidaye @sadie_jane @esfourplus @jillianm, do you have any thoughts or insights to add?

@89630208, may I ask what treatments you've tried that had adverse side effects, or that were not effective? Have you made significant changes to diet as well?

REPLY
89630208 | @89630208 | Oct 19, 2017
In reply to @89630208 "I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They..." + (show)
@89630208

I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They didn't even know what it was back then. I spent most of my childhood in bed. I was miserable most of my life, until 9 yrs ago. I moved and went to a new Rheumatologist. He prescribed Methotrexate. The drug doesn't cure this disease, but it puts you in remission indefinitely. I have been in total remission for 9 yrs! It has been a miracle. No side effects, no knots, no pain, no fever, no aches, no fatigue. It's amazing!! Anyone with this disease needs to get to a Rhemotologists and ask for Methotrexate. It saved my life!

Jump to this post

I was treated in the past with Cortisone injections and Prednisone pills. Both put weight on me and I had so much Cortisone that it weakened my bones. I have spent my entire adult life with one fracture after another. I just had my 20th surgery in Aug. If I fall or bump into something, I will fracture a bone. If I lean over to clean the bathtub, I will fracture ribs. I take Prolia to help with my bone density. However, I still fracture bones every now and then.

I did not change my diet because I am a diabetic and I was already eating healthy. But, they tried changing my diet when I was 7 or 8 and it made no difference.

Little was known about this disease when I was 7. I spent my childhood at Emory Hospital in Atlanta with doctors from all over the world coming to see me, so I know a lot about this illness. For this reason, I would be happy to answer any questions.

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jellybean16 | @jellybean16 | Nov 1, 2017

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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