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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Jillian | @jillianm | Jul 19, 2017
In reply to @gailb "Thank you @jillianm. I think I'm going to try this as I have been having multiple..." + (show)
@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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Jillian | @jillianm | Jul 19, 2017
In reply to @jillianm "I've had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no..." + (show)
@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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Jillian | @jillianm | Jul 19, 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?

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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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jul 19, 2017

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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jellybean16 | @jellybean16 | Aug 14, 2017

@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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1 reply
GailBL, Alumni Mentor | @gailb | Aug 14, 2017
In reply to @gailb "Thank you @jillianm. I think I'm going to try this as I have been having multiple..." + (show)
@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

Jump to this post

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

REPLY
GailBL, Alumni Mentor | @gailb | Aug 14, 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

@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

REPLY
GailBL, Alumni Mentor | @gailb | Aug 14, 2017
In reply to @jellybean16 "@beff2468 im so glad, iv come accross this site and these comments, because im so tired..." + (show)
@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

Jump to this post

@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

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 14, 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

@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

REPLY
peach414144 | @peach414144 | Aug 14, 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

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.

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