Eosinophilic Fasciitis: Looking to connect with others

Posted by stephg @stephg, Jul 8, 2020

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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | Jul 8, 2020

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?

stephg | @stephg | Jul 8, 2020

In reply to @johnbishop "Hello @stephg, Welcome to Mayo Clinic Connect. I was unable to find any posts on Connect..." + (show)

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!

John, Volunteer Mentor | @johnbishop | Jul 9, 2020

In reply to @stephg "Thank you for responding! I did see the Back to Nature article online and felt encouraged..." + (show)

@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.

verilee1776 | @verilee1776 | Jul 13, 2020

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.

stephg | @stephg | Jul 14, 2020

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

stephg | @stephg | Jul 22, 2020

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

Thank you

Colleen Young, Connect Director | @colleenyoung | Jul 23, 2020

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?

mtnyankee | @mtnyankee | Aug 3, 2020

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

donnai12345 | @donnai12345 | Aug 9, 2020

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.

John, Volunteer Mentor | @johnbishop | Aug 10, 2020

In reply to @donnai12345 "Hi Stephg, I have an appointment with the rheumatologist in a few weeks. I am sure..." + (show)

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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