Eosinophilic Fasciitis?

Posted by stephg @stephg, Jul 8 4:38pm

I’ve had fatigue, muscle stiffness and weakness, headaches and GI symptoms (among other things) for 5-6 years. Tore my rotator cuff a decade ago by lowering myself onto the floor and tore my plantar fascia a couple years ago by simply walking.

Several months ago they detected an adrenal nodule and have said they believe it is non functioning, but I’m having glucose swings and my thyroid is now enlarged. I very recently discovered unusual markings on my neck, along with marks on my arms and thighs that have been there for years, but docs said they didn’t know what it was because blood tests didn’t detect anything anomalous.

I’ve recently contacted Mayo for an appointment and my doc has sent a referral for me. But I’m just wondering if anyone else with EF has had an adrenal nodule and experienced these things? I do a lot of research and feel like maybe I’m on the right track, but who knows….

Thank you!

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Liked by mtnyankee

Hello @stephg, Welcome to Mayo Clinic Connect. I was unable to find any posts on Connect for Eosinophilic Fasciitis but that doesn't mean there aren't members out there with the condition. I know it can be hard not having all the answers but it's great to see that you are reaching out and learning as much as you can by being your own best advocate.

I did find a patient story from Sharing Mayo Clinic that talks about Eosinophilic Fasciitis that you might find helpful.
Back to Nature After Specialized Care for a Disabling Condition: https://sharing.mayoclinic.org/2018/02/08/back-to-nature-after-specialized-care-for-a-disabling-condition/

You might also find the following discussion helpful – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Do you already have your appointment scheduled with Mayo Clinic?

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@johnbishop

Hello @stephg, Welcome to Mayo Clinic Connect. I was unable to find any posts on Connect for Eosinophilic Fasciitis but that doesn't mean there aren't members out there with the condition. I know it can be hard not having all the answers but it's great to see that you are reaching out and learning as much as you can by being your own best advocate.

I did find a patient story from Sharing Mayo Clinic that talks about Eosinophilic Fasciitis that you might find helpful.
Back to Nature After Specialized Care for a Disabling Condition: https://sharing.mayoclinic.org/2018/02/08/back-to-nature-after-specialized-care-for-a-disabling-condition/

You might also find the following discussion helpful – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Do you already have your appointment scheduled with Mayo Clinic?

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Thank you for responding! I did see the Back to Nature article online and felt encouraged to reach out to Mayo since EF is my best guess. CFS is an interesting thought- I do have some of those symptoms, but haven’t seen much online about CFS skin issues like I have.

I do not yet have an appointment…

Thank you!

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@stephg

Thank you for responding! I did see the Back to Nature article online and felt encouraged to reach out to Mayo since EF is my best guess. CFS is an interesting thought- I do have some of those symptoms, but haven’t seen much online about CFS skin issues like I have.

I do not yet have an appointment…

Thank you!

Jump to this post

@stephg — If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Also if you looking at the Rochester Mayo Clinic Campus and need local information please let me know. Be happy to help you find it.

Liked by stephg

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I hope you’re able to schedule an appointment at Mayo soon. My husband suffered with similar skin afflictions in 1988-89 and was one of a few hundred persons eventually diagnosed with a rare disease resulting from consumption of a poisoned food supplement from Japan. The supplement was L-tryptophan.
This diagnosis was eosynophilic myalgia syndrome. There were many different kinds of symptoms. The point of this post is to recommend that if you take any food supplements, be sure to inform your physicians.
Hope this helps.

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Thank you- I’m working in it. Were his skin symptoms similar to mine?

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I was not accepted to Mayo- still looking for suggestions for treatment.

Thank you

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Hi @stephg, I'm sorry to hear that. Have you heard of the Mayo Clinic Care Network? The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See more here: https://www.mayoclinic.org/about-mayo-clinic/care-network/about

@verilee1776, were supplements the only treatment your husband had?

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Thank you for sharing. I feel as if I am seeing pictures of myself and had no name for the condition.

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Hi Stephg, I have an appointment with the rheumatologist in a few weeks. I am sure I have Eosinophilic fasciiitis. I also have Lyme and have read a few journal articles about Lyme fasciitis. What are you doing for treatment? Such a rare disease that it is hard to find anyone to communicate with about it. I have the deep groove in my forearm and venous furrowing. I believe doing a lot of yoga tirggered the symptoms.. I am in Canada.

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@donnai12345

Hi Stephg, I have an appointment with the rheumatologist in a few weeks. I am sure I have Eosinophilic fasciiitis. I also have Lyme and have read a few journal articles about Lyme fasciitis. What are you doing for treatment? Such a rare disease that it is hard to find anyone to communicate with about it. I have the deep groove in my forearm and venous furrowing. I believe doing a lot of yoga tirggered the symptoms.. I am in Canada.

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Hello @donnai12345, Welcome to Connect. I'm sure it is really difficult when you have such a rare disorder and not much is known about it. Learning as much as you can about Eosinophilic fasciiitis will help you communicate better with the rheumatologist or doctor. You may have already seen the National Organization for Rare Disorders website page for Eosinophilic fasciiitis but I thought I would share it here in case you haven't seen it: https://rarediseases.org/rare-diseases/eosinophilic-fasciitis/

Can you let us know how your upcoming appointment with your rheumatologist goes?

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@colleenyoung

Hi @stephg, I'm sorry to hear that. Have you heard of the Mayo Clinic Care Network? The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See more here: https://www.mayoclinic.org/about-mayo-clinic/care-network/about

@verilee1776, were supplements the only treatment your husband had?

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Supplements were not a treatment; L-tryptophan was the cause. It was poisoned due to a change in how the manufacturer made it. He had taken it to help with sleep. It was removed for a time by FDA from being sold but came back to shelves in another form.
He had a rash, extreme swelling of hands and lower legs (his hands looked like balloons), and unbearable pain throughout. He could barely walk. There was scleroderma, erythema multiforme 3 different times, and extreme bone loss. Essentially there was no real treatment for all the resulting consequences. He was given prednisone which caused its own serious consequences, including two surgeries. We were blessed that he survived with disability. We had been married less than five years at the time.
Needless to say, I do not trust any “food supplements” unless they are USP certified, nor most medications.

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Was this L-tryptophan part of the bad Japanese stuff of a few years ago? I might be wrong, but I think Mayo Clinic may have linked L-tryptophan to the possibility of developing a type of cancer. I remember reading their comments and tossing mine. Check out L-tryptophan on the Mayo Website.

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@ellens

Was this L-tryptophan part of the bad Japanese stuff of a few years ago? I might be wrong, but I think Mayo Clinic may have linked L-tryptophan to the possibility of developing a type of cancer. I remember reading their comments and tossing mine. Check out L-tryptophan on the Mayo Website.

Jump to this post

It was. There were multiple medical consequences as a result of the L tryptophan changes. There have been surveys conducted by NEMSN with physicians and Ph.Ds

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