1. < Autoimmune Diseases

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!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 2, 2023
In reply to @mmr65 "Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4..." + (show)
@mmr65

Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4 months starting at 50mg. I felt that the side effects added a lot more misery. I have been off the medication for about 5 weeks now. I still have issues with tightness in my arms and calves and knees.
I am a lot better than I was a year ago though. I am in the process of reaching out to a specialist at UC Davis.
It can be a lonely journey.
I have been in touch with a lady from New Mexico who also has this rare disease. It has been very uplifting to just talk about.
I think it is great that you get to do PT hopefully that will help your mobility.
If you ever feel like talking you are more than welcome to call me.
Best regards
Maria

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@mmr65 @svcfeo May I suggest that you exchange phone numbers in Private Messages. You can find private messages by going to the top of this page and clicking on the person icon. A drop down menu comes up and you want to click on messages. Try it! It’s easy!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 2, 2023
In reply to @mmr65 "Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4..." + (show)
@mmr65

Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4 months starting at 50mg. I felt that the side effects added a lot more misery. I have been off the medication for about 5 weeks now. I still have issues with tightness in my arms and calves and knees.
I am a lot better than I was a year ago though. I am in the process of reaching out to a specialist at UC Davis.
It can be a lonely journey.
I have been in touch with a lady from New Mexico who also has this rare disease. It has been very uplifting to just talk about.
I think it is great that you get to do PT hopefully that will help your mobility.
If you ever feel like talking you are more than welcome to call me.
Best regards
Maria

Jump to this post

Hello Maria @mmr65, You will notice that we removed your telephone number to protect your privacy since Connect is a public forum that anyone can see. As @becsbuddy also mentioned, members can exchange contact information using the private message function of Connect. See the Help Center for more information on how to send a private message and other features of Connect - https://connect.mayoclinic.org/help-center/.

REPLY
mvoge | @mvoge | Jun 10, 2023

What are the Symptoms of hypereosinophilia?
I have intense night time itching, rashes covering large areas, 31,00 eosinophils, and fatigue.

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1 reply
barbourpatrick72 | @barbourpatrick72 | Aug 8, 2023

Hi,
I was diagnosed with EF in 2015 at the Cleveland clinic in Miami and have had quite the experience with it. I developed ulcers on my feet soon after starting treatment with Methotrexate and Prednisone. I have been treating them at wound care for several years now and my rheumatologist prescribed me LDN and I have improved slightly.

REPLY
kkaping | @kkaping | Jun 12 3:07pm

Hi All,

I have recently been diagnosed with eosinophilic fasciitis (EF) here in Oregon. It's hard to find people (as there are not many of us) to discuss symptoms and treatments. I do sometimes feel very isolated. Stephg, I would be happy to connect to share my experience and hear more about your health journey with this unicorn disorder.

REPLY
1 reply
edl75 | @edl75 | Jun 13 10:33am
In reply to @kkaping "Hi All, I have recently been diagnosed with eosinophilic fasciitis (EF) here in Oregon. It's hard..." + (show)
@kkaping

Hi All,

I have recently been diagnosed with eosinophilic fasciitis (EF) here in Oregon. It's hard to find people (as there are not many of us) to discuss symptoms and treatments. I do sometimes feel very isolated. Stephg, I would be happy to connect to share my experience and hear more about your health journey with this unicorn disorder.

Jump to this post

There are so many weird eosinophil disorders. I have Gleich syndrome. My eosinophil count goes from lows of 1500 to highs of 25000 in a 30 day period. Causes edema, itching, severe body aching. Diagnosed in 2014. Took 1 yr to diagnose as no doctor , not even John Hopkins could figure it out. NIH determined what I had and I have been in a research program , 1 of less than a dozen people worldwide diagnosed and in their program. I just take 4 mg of prednisone daily for 4 days and it quickly eliminates my symptoms. You ma want to contact NIH they have a complete research dept on eosinophil disorders. Good luck. Crazy , when doctors see my eosinophil numbers they all say they have never heard of Gleich

REPLY
edl75 | @edl75 | Jun 13 10:37am
In reply to @mvoge "What are the Symptoms of hypereosinophilia? I have intense night time itching, rashes covering large areas,..." + (show)
@mvoge

What are the Symptoms of hypereosinophilia?
I have intense night time itching, rashes covering large areas, 31,00 eosinophils, and fatigue.

Jump to this post

Well with 31000 eosinophils you very likely have some eosinophilic disorder. Do you gain and lose 5 lbs or so on a regular basis? Retain and then release fluids. Itching and fatigue common among most eos disorders

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