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kgjd97
@kgjd97

Posts: 3
Joined: Sep 22, 2016

Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

Posted by @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.

REPLY

Hi @kgjd97, and welcome to Connect! I’m so glad you joined the community, and I want to introduce you to help you find answers (and hopefully relief!). Please meet @johnwburns, @sebley and @kimberly. I’m also including some information on the condition: http://wb.md/2cVtnQm.

@kgjd97, have you found any remedies that seem to subside the flare ups?

@alysebrunella

Hi @kgjd97, and welcome to Connect! I’m so glad you joined the community, and I want to introduce you to help you find answers (and hopefully relief!). Please meet @johnwburns, @sebley and @kimberly. I’m also including some information on the condition: http://wb.md/2cVtnQm.

@kgjd97, have you found any remedies that seem to subside the flare ups?

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In the beginning I would take prednisone. It would help for a bit but once I was weaned off the meds, the flare up would come back. It was almost like a roller coaster and made me flare ups last longer. After a few years of this happening I made the decision to stop the steroids, take pain meds and wait the flare up out. I’ve tried sooooo many drugs over the years but either the side effects were too much for me or the meds just didn’t work at all.

Hi, I have found some relief using HCQS 200. The nodules disappear. The pain killer Naproxen is a wonderful drug. I t relieves me of my pain. Try using this. I have been using this drug HCQS for 3 months and dr has told me not to stop till he tells me to. Naproxen, I take sos.

I just found out 2 weeks ago I have this condition. My kidney and GI specialists both said it was arthritis related. After looking it up on the internet everything I have points to erythema nodosum. Mine have turned in to bruise like places. Still sore to touch. Have been on prednisone for years because of polymialgia and RA. Hopefully this is just one episode only. I’m 72 years old and in good health otherwise.

@freemary

I just found out 2 weeks ago I have this condition. My kidney and GI specialists both said it was arthritis related. After looking it up on the internet everything I have points to erythema nodosum. Mine have turned in to bruise like places. Still sore to touch. Have been on prednisone for years because of polymialgia and RA. Hopefully this is just one episode only. I’m 72 years old and in good health otherwise.

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@freemary, Hello! Thank you for joining and welcome to our community!

I am connecting you with community members @kgjd97 and @kety. Patient support or talking with someone else who is going through or has gone through the same thing as you will help support you through your Chronic Erythema Nodosum journey.

From what I have read this tends to flare up then go away, right? I cant imagine the pain.

Are the “bruise like places” open on the skin? or does it just flare up under the skin?

sending you warm thoughts from the frigid cold in MN!!

@freemary

I just found out 2 weeks ago I have this condition. My kidney and GI specialists both said it was arthritis related. After looking it up on the internet everything I have points to erythema nodosum. Mine have turned in to bruise like places. Still sore to touch. Have been on prednisone for years because of polymialgia and RA. Hopefully this is just one episode only. I’m 72 years old and in good health otherwise.

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The bruise spots are still sore to touch. I’m use to pain, having RA and polymialgia, that causes your muscles to become inflamed. This is the first time for erythema nodosum. I do have a raised rig about 1 1/2″ around my left upper arm, it’s sore to touch but has never changed color. Had it for years. No open sores.

@freemary

I just found out 2 weeks ago I have this condition. My kidney and GI specialists both said it was arthritis related. After looking it up on the internet everything I have points to erythema nodosum. Mine have turned in to bruise like places. Still sore to touch. Have been on prednisone for years because of polymialgia and RA. Hopefully this is just one episode only. I’m 72 years old and in good health otherwise.

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Hi, I am relived for the first time in years. My doctor has put me on Wysolone and Nucoxia. I have just started the medication and am feeling much better. The redness of the nodules has gone and the nodules are fast disappearing, no pain. Maybe due to pain killer Nucoxia. I am to continue Wysoline which I understand is a steroid for five days, three times a day, then twice a day for 5 days and then once a day for 5 days. I just hope this does not recur when the medication is stopped. Will keep you informed.

Hi, I have Eyrthema Nodosum and also a Connective Tissue Disorder called Ehlers-Danlos Syndrome (EDS). It’s pronounced Aylers-Danlos. Maybe worth looking into for yourself. Good luck.

Hello @blossom2016,

Welcome to Connect, and thank you so much for sharing information as I’m sure it will be of interest for @kety, @freemary, @kgjd97.

I would like to introduce you to a few members who have discussed Ehlers-Danlos Syndrome (EDS), and I hope that they will join this conversation; please meet @tabitha, @lisafl, @Deedeerichards, @zildjiangirl, and one of our Mentors, @kariulrich.

@blossom2016, may I ask how you have managed your condition thus far? Do you have any advice or suggestions for other Connect members?

Well, my 2 (now adult) children and I have Ehlers-Danlos Syndrome (EDS).
• My youngest has crossover symptoms of Marfan Syndrome.
• What we know about EDS/Marfan Syndrome…
• EDS/Marfan Syndrome are “Connective Tissue Disorders”.
(It is believed that Abraham Lincoln had Marfan Syndrome, Michael Phelps has Marfan Symdrome, And Austin Carlile from ‘Of Mice & Men’ has Marfan Syndrome).
• “Connective Tissue” disorders means Arteries / Vessels / Tendons / Ligaments / Nerves / Muscle / Bone / Skin…are abnormally weak & fragile. Can easily tear, burst, rupture, fracture…spontaneously, during sleep, with little or no trauma, or often times, no known cause. This leaves endless, potentially life threatening injuries, issues, and complications.
• Vessels & Arteries of our hearts, head & eyes are closely monitored for enlargements, Aneurysms, or Aortic Dissection (John Ritter).
• Joints are weak & unstable, hypermobile, bendy, flexible, or “double jointed”…
• Weak tendons & ligaments cause joints to dislocate…easily, repeatedly, permanently. This includes Ribs, Ribs from Spines, Jaw, and Retinas of the eyes…
• Repeatedly dislocating a joint then leaves chronic joint pain. (like Arthritis). Often times mistaking as simply “growing pains”.
• Chronic pain & fear of injuries causes anxieties, insomnia, depression.
• Because everything is connected, everything is somehow affected causing endless “secondary” conditions: POTS, IBS, Scoliosis, Osteoperosis, Costocondritis, Neuropathy…
• EDS is inherited (genetic).
• There is no cure.
• The only treatment is close monitoring, dealing with each issue as it arises, and avoidance to preserve and protect, as best as possible.

• We post about Ehlers-Danlos Syndrome for that slim chance that:
1) It just might help someone else.
2) Someone else just might have a snippet of info to offer.
3) To Educate.
Because, the more educated family, friends, teachers, schools, even medical professionals are, the easier it becomes.

This article has good info about the hypermobility type of Ehlers Danlos Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK1279/ Note: there are other types such as vascular and classical just google genereviews and Ehlers Danlos. The diagnostic criteria for EDS is actually being looked at for revisions by the experts internationally and last I heard they were planning on publishing it in the spring.
Physical Therapy can be an important piece of treatment, especially manual therapy and closely monitored exercise to help increase strength to support the hypermobile joints. It can be very slow going, but very helpful.
I have found some wonderful physicians at Mayo in FL to be part of my treatment team (especially for headaches and PT).

Hi everyone! I was diagnosed with hypermobile EDS by Dr. Nazli McDonnell years ago, is anyone here familiar with her research she did while at the NIA/NIH? My son also has characteristics but has not been formally diagnosed. I also have a vascular disease called FMD. This is a abstract of some of her work. http://grantome.com/grant/NIH/ZIA-AG000895-04

@freemary

I just found out 2 weeks ago I have this condition. My kidney and GI specialists both said it was arthritis related. After looking it up on the internet everything I have points to erythema nodosum. Mine have turned in to bruise like places. Still sore to touch. Have been on prednisone for years because of polymialgia and RA. Hopefully this is just one episode only. I’m 72 years old and in good health otherwise.

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i STOPPED Nucoxia, though I still have four days of Wysolone to go. Once a day. The nodules have started again and painful. Only painkillers seem to work. God knows if there is any treatment for this. I am planning on seeing a Homoeopath Doctor.

So sorry for anyone else having to go through EN. One of the difficulties is you are in pain and sickness and you dont look sick. The fever is low grade. Tell others you have an auto-immune disease since most people these days know what that is. Don’t waste your breath and energy explaining it because seriously most people dont get it. If you tell them its a type of skin disease, some people think they can catch it. Take care of yourself! Make sure you rest with legs elevated. The beginning of the disease is the worst with weakening, diarrhea, low grade fever, nausea, before the onset of the lesions. No, you don’t have a fever over 99.5 but believe your body is sending all of its energy to attack itself and make you better, auto-immune disease. The major way you get over this disease is by resting. Let your family know you need their help. Having it for the first month is purely exhausting and I am athletic.

**You have to keep taking the ibuprofen even when you think it is gone and you’re feeling great because it will come back worse with a vengeance if you don’t. This happened to me several times when I stopped ibuprofen too early. You can back off the doseage to 400-600 mg 3 times a day but dont take it completely away until you are sure its gone.
I had chronic erythema nodosum which was not recognized yet by most doctors as “chronic” for a long time from 1986 in college to 2002. Mayo was first ones I knew of to do this. I still have written it down on my chart and had doctors tell me there is no such thing, ha! While I could reproduce the articles for them I just nod my head and know that most people are ignorant on this subject. Why? Truly I was told by doctors not much research has been done. People don’t die from it if they have been extensively poked, prodded, chest xrayed, blood tested, eye checked, etc., and found nothing else wrong. With my first diagnosis in 1986, my father was a ENT at Barnes St Louis so he took me to his doctor friends, my shoes wouldnt go on because swelling came on so suddenly and I had no meds, anti-inflammatories. A bunch of specialists came into the room, med students, camera man, to take pictures for books. Then they put me on high doses of ibuprofen, 800 mg three times a day. It took about 12 weeks before I started feeling like I could walk without pain. I continued to have this once a year to year and a half for 10 years. I still had 2 lesions on my legs for awhile after recovering that remained there for a few years. I told my dad who again was a doctor, I really thought those two lesions were not just residual bruising and/or permanent joint damage but erythema nodosum still active. He believed me and asked me if I wanted to have a biopsy there. It was in a bad location for a biopsy (still have a scar) but I was game. After the biopsy the lab showed positive results for EN! I felt justified because everyone acts like you should be fine, it’s gone. But, I can tell you from this and having this sooo many times, that one or two can remain for awhile. Mine went away about 2 years after that initial. I still have tenderness and discoloration, darkness in that area and in 2 others that is permanent damage. (I have very white skin.) I can run without pain. The biggest way I notice it is if I am sitting on the floor. I can’t cross my legs normally.
As far as medicine, best thing is taking non-steroidal anti-inflammatories NSAID consistently 800 mg ibuprofen or naproxen if you can handle that. Dr put me on Naprosyn i.e. Naproxen before it came onto the over the counter market. 800 mg 3 times day. It hurt my stomach badly so I asked to go back to ibuprofen.
As to why you have it, I was tested over and over again first 5 times by specialists for Sarcoidosis, strep throat, lupus, rheumatoid arthritis, etc. Doctors told me after that, unless it was bad, I didnt need to come back. I did get EN again 6 years later ( month after getting chigger bites all over my legs) for the last time in 2001, it was the worst case I had. Lesions all over shins, both upper legs and thighs, and two on forearms. So painful! I couldnt work for 2 weeks. New doctor, dermatoligist, thought maybe I had something like lupus while I told her EN with unknown cause. Ran tests and had a biopsy and findings again were EN. Had me again take ibuprofen nothing else.
I have never posted to a medical site. Hope this helped. Take care! Sending prayers your way!

@beff2468

So sorry for anyone else having to go through EN. One of the difficulties is you are in pain and sickness and you dont look sick. The fever is low grade. Tell others you have an auto-immune disease since most people these days know what that is. Don’t waste your breath and energy explaining it because seriously most people dont get it. If you tell them its a type of skin disease, some people think they can catch it. Take care of yourself! Make sure you rest with legs elevated. The beginning of the disease is the worst with weakening, diarrhea, low grade fever, nausea, before the onset of the lesions. No, you don’t have a fever over 99.5 but believe your body is sending all of its energy to attack itself and make you better, auto-immune disease. The major way you get over this disease is by resting. Let your family know you need their help. Having it for the first month is purely exhausting and I am athletic.

**You have to keep taking the ibuprofen even when you think it is gone and you’re feeling great because it will come back worse with a vengeance if you don’t. This happened to me several times when I stopped ibuprofen too early. You can back off the doseage to 400-600 mg 3 times a day but dont take it completely away until you are sure its gone.
I had chronic erythema nodosum which was not recognized yet by most doctors as “chronic” for a long time from 1986 in college to 2002. Mayo was first ones I knew of to do this. I still have written it down on my chart and had doctors tell me there is no such thing, ha! While I could reproduce the articles for them I just nod my head and know that most people are ignorant on this subject. Why? Truly I was told by doctors not much research has been done. People don’t die from it if they have been extensively poked, prodded, chest xrayed, blood tested, eye checked, etc., and found nothing else wrong. With my first diagnosis in 1986, my father was a ENT at Barnes St Louis so he took me to his doctor friends, my shoes wouldnt go on because swelling came on so suddenly and I had no meds, anti-inflammatories. A bunch of specialists came into the room, med students, camera man, to take pictures for books. Then they put me on high doses of ibuprofen, 800 mg three times a day. It took about 12 weeks before I started feeling like I could walk without pain. I continued to have this once a year to year and a half for 10 years. I still had 2 lesions on my legs for awhile after recovering that remained there for a few years. I told my dad who again was a doctor, I really thought those two lesions were not just residual bruising and/or permanent joint damage but erythema nodosum still active. He believed me and asked me if I wanted to have a biopsy there. It was in a bad location for a biopsy (still have a scar) but I was game. After the biopsy the lab showed positive results for EN! I felt justified because everyone acts like you should be fine, it’s gone. But, I can tell you from this and having this sooo many times, that one or two can remain for awhile. Mine went away about 2 years after that initial. I still have tenderness and discoloration, darkness in that area and in 2 others that is permanent damage. (I have very white skin.) I can run without pain. The biggest way I notice it is if I am sitting on the floor. I can’t cross my legs normally.
As far as medicine, best thing is taking non-steroidal anti-inflammatories NSAID consistently 800 mg ibuprofen or naproxen if you can handle that. Dr put me on Naprosyn i.e. Naproxen before it came onto the over the counter market. 800 mg 3 times day. It hurt my stomach badly so I asked to go back to ibuprofen.
As to why you have it, I was tested over and over again first 5 times by specialists for Sarcoidosis, strep throat, lupus, rheumatoid arthritis, etc. Doctors told me after that, unless it was bad, I didnt need to come back. I did get EN again 6 years later ( month after getting chigger bites all over my legs) for the last time in 2001, it was the worst case I had. Lesions all over shins, both upper legs and thighs, and two on forearms. So painful! I couldnt work for 2 weeks. New doctor, dermatoligist, thought maybe I had something like lupus while I told her EN with unknown cause. Ran tests and had a biopsy and findings again were EN. Had me again take ibuprofen nothing else.
I have never posted to a medical site. Hope this helped. Take care! Sending prayers your way!

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Mine seems to be going away. I’ve been on prednisone for years. I also have CKD and pancreatitis and RA, so it’s hard to tell what is causing what. I don’t have a fever, but I do have the other symptoms. Knowing what to eat and what not to eat is a problem since CKD and pancreatitis diets conflict with one another. I hope this EN does not come back, but my polymialgia comes and goes since 2009. I can’t aford to lose any more weight. This has all been so frustrating.

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