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.

@gailb

Thank you @jillianm. I think I’m going to try this as I have been having multiple problems that I’ve been told are autoimmune in nature. Gluten may be the culprit. Is there a medical test that can determine this? Gailb

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@jillianm. I’ve been tested for celiac and I don’t have it. Thanks for your insight. Gail B Ledesma

@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?

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@kim4hope. I decided to try ART for my chronic pain on my right hip,thigh, knee and ankle. Active Release Technique, which you can look up on Google, basically uses deep tisue manipulation while moving various parts of your body to release muscles and nerves that have been bound together. After 3 months of PT that gave me no relief from constant and excruciating pain on my right side, I read about ART on Connect and decided to try it. After 6 sessions over 3 weeks, I was nearly completely free of pain. I still had pain at night that awoke me. I had 1 monthly followup and after that was completely without pain until about 4 days ago. In fact, I was going to cancel my second monthly followup since I didn’t really need it. Unfortunately my pain returned at night primarily at night. We have been doing lots of packing all of our stuff, moving, unpacking in the last 2 weeks and I think that’s caused my recurrent pain. My followup is on Wednesday of this week is something I’m looking forward to! ART has kept me from having major back surgery to fuse my L4-L5. I think you may want to try this technique since nothing has worked to relieve your pain. You should know in 2 or 3 weeks whether or not it will work for your pain. My MRIs, CT scans, ultrasounds, and x-rays have never shown a problem or cause for my pain. I now know exactly the ligaments that get bound up and were released by the ART practitioner. Practitioners are usually Chiropractors who have had additional training and certification in ART. Please let us know if you decide to try it, and if it helps or not. Ill report about my followup appointment on Wednesday and if it relieves my pain again.

I hope you and others on this thread find relief and comfort for your pain. Gail B Ledesma

@jellybean16

@beff2468 im so glad, iv come accross this site and these comments, because im so tired of doctor after doctor ,and everyone looks stumped ,iv battled ED for 3 years now each year worse ,somedays im limping in pain ,and no-one knows but me ,im so tired of trying to figure this out ,and have started to feel deppressed over it ,knowing, im not crazy and im in pain ,iv taken pictures of all my lumps daily ,mine appear even on my arm chest ,and only apon activities, im jist glad there are other people who know what im going through

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@jellybean16. See my response to @kim4hope. I posted about a technique you may want to try. It has really helped relieve my pain! I encourage everyone to try it . Were all different and this might be something that works for you. I fist heard about ART on Connect.
Gail B Ledesma

@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?

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@gailb – Thank you, thank you, thank you! I did some searching on active release technique and see that it also has some application for lower back pain which I’ve been struggling with for a few years. I’m am going to give it a try in the next few days after I do some studying to figure out how to do it. Finally I see a light at the end of the tunnel.

John

@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?

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thanks for the tip. i have 2 pinched nerves in my neck. amongst other things.what i do to help the pain is: i have a cord hanging from high in the closet. when i sit on a stool and pull on the ropes with both arms going each arm taking its turn up and down, up and down etc., ets. pulling hard after about 20 minutes usually the pain is gone. some times i need to do this for about 3 times a day then thank you, thank you the pain is gone. a chiropractor showed me this. he has helped me with headaches and other problems off and on.

@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?

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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.

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.

@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?

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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.

Liked by kim4hope

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

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?

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!

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

@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!

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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?

@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!

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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.

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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