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.

@sadie_jane

Hello Everyone,

Many of your stories sound familiar. I was diagnosed with lupus in 2001 at age 17 after a severe flare up of erythema nodosum, along with pericarditis and various other symptoms. At the time my rheumatologist didn’t call it EN, but over the past year EN has been added to my diagnosis, and we are currently waiting on sarcoidosis blood work to confirm that as well.

Last summer I had my EN biopsied by a young doctor, and it was a painful experience. They didn’t go deep enough to get enough fat cells, and the biopsy was inconclusive. I’m having another flare again now. Last week, I went to a more experienced dermatologist who was able to confirm the EN without a biopsy, by just looking at my “spots” as I call them. The nodules are painful before they are visible, and they gradually appear on my lower legs first. They start out as small bright pink/red dots, then grow in size & firmness. They get larger, dark and bruise-like, then eventually (with treatment) they fade out like a bruise. It often takes several weeks for the spots to completely fade even after the pain & swelling goes away. I always fear they will scar, but so far I have not experienced scarring.

When I have flares, I take prednisone. I have not been able to tolerate the Plaquenil. I also use naproxen for the pain, and otc Prilosec to combat the gastro issues. My dermatologist recommended coated baby aspirin for the pain this time, and I am giving it a try. After using aspirin for 2 days, I think the naproxen does a better job with the pain. Rest & elevation help me through the work day. Cold compresses and Epsom salt baths can be soothing in the evenings.

My heart goes out to all of you experiencing EN. Thank you for sharing your stories. It is comforting to know I am not alone. I am fortunate to have a team of doctors working to help me understand my situation, but I know it can be frustrating to have friends, family, and even doctors tell you that nothing is wrong when you are in pain and know something is not right.

Kindly,
SJ

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Welcome to Connect, Sadie Jane and thank you for adding your story to the EN journeys shared by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 and @stacidaye.

Keep us posted on the results of the blood work testing for sarcoidosis. How do you deal with family, friends and even health professionals that tell you nothing is wrong or don’t understand the pain and other symptoms you live with? Do you try to educate them? Ignore the comments? Do you have friends or family members that get it?

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@beff2468
So appreciated reading your post. I was recently diagnosed with EN. My doctor didn’t seem to think it was that big a deal, but it was so painful to walk… lump o. Leg very tender and swelling/stiffness in ankles made moving feet difficult. Also just felt ill. I am a Breast cancer survivor … four years now. And this frightened me… I thought maybe rogue cells had traveled to my leg and ankles. Just learning about EN now and appreciate any info. Ty.

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Hello @esfourplus, and welcome to Connect.

I hope you’ve had a chance to read through the previous messages by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @sebley12, @sgerard, @kimmy63 and others in this group.

Can you tell us a bit more about yourself? What treatments have you tried?

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I’ve had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr’s in New York, many of whom saw my welts but still thought most of it was psychosomatic. It’s crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I’ve been off gluten ever since and now I’m a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

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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 had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr’s in New York, many of whom saw my welts but still thought most of it was psychosomatic. It’s crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I’ve been off gluten ever since and now I’m a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

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Hello @jillianm,

Welcome to Connect; thank you for adding your story to the EN journeys shared by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 @stacidaye @esfourplus @lisafl and other members in this group.
I wonder if they have experienced similar benefits?

@jillianm, may I ask, how did you manage your symptoms before learning about gluten? I’m really glad to know that you found some form of relief.

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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

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 had Strep Throat in South America and ended up with Psoriatic Arthritis and assorted auto-immune conditions.

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Hello @kim4hope,

Welcome to Connect, and thank you for adding your story to the Erythema nodosum (EN) journeys shared by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 @stacidaye @esfourplus @jillianm.

@sebley12 has also posted about EN, and I hope will join in with more insight for you.

With regard to the humming in the ear, here’s what I found: “Non-steroidal anti-inflammatory drugs (NSAIDS) such as ibuprofen and naproxen can also cause tinnitus at higher doses. These effects are usually reversible.” http://www.lifestylehearing.ca/2013/07/ototoxic-medications/

I wonder if any of the members tagged in this discussion have experienced similar ear problems?

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@jillianm

I’ve had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr’s in New York, many of whom saw my welts but still thought most of it was psychosomatic. It’s crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I’ve been off gluten ever since and now I’m a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

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@kanaazpereira I took prednisone for the welts, advil for the pain, and adderall or vyvance to stay awake. The gluten for me was the only way to really get everything under control.

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@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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@gailb you can get tested for celiac disease but not for a gluten intolerance. I am not a dr. but I always assumed that people with celiac have stomach problems but our symptoms are autoimmune.

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@jillianm

I’ve had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr’s in New York, many of whom saw my welts but still thought most of it was psychosomatic. It’s crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I’ve been off gluten ever since and now I’m a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

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@kanaazpereira – if you’re into home remedies, I used to make a shot every morning of Tumeric, fresh juiced ginger, E3 live, Flax seed oil, lemon juice, and cayenne pepper.

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@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’m really sorry to hear that you’ve been struggling. I’ve been there and it sucks. It’s a shame that western medicine doesnt have all the answers. I’ve had luck controlling my symptoms with the gluten and I really hope that going off gluten provides you with relief. I’ve also done acupuncture and seen some other alternative medicine drs. I recommend thinking out of the box.

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I would also encourage you to check out Mayo Clinic’s Celiac Disease blog, with regard to gluten sensitivity. Here’s a post by Mayo Clinic gastroenterologist, Dr. Murray, M.D. that might interest you:
The Strange World of Non-Celiac Gluten Sensitivity: http://celiacblog.mayoclinic.org/2015/12/14/the-strange-world-of-non-celiac-gluten-sensitivity/

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@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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