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nicgorsuch (@nicgorsuch)

Ebstein Barr & Fibromyalgia

Chronic Pain | Last Active: Feb 8, 2020 | Replies (16)

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@sarasally2

I was diagnosed with fibro/CFDS 30 years ago, got diagnosed with everything from soup to nuts and a lot of the nuts. Went to the Cleveland Clinic to rule out some things and left with POTS, fibro and CFDS. Not much has changed in all these years, I tried tons of meds and still they insist on giving you the same things that didn't work 30 years ago. As the years have gone by I have dealt with other issues which flare up the fibro so it is a daily struggle. I find" Fed Up with Fatigue" to have some good info, what works for one doesn't for the other but the main thing is not to give up. I do know some who recovered but not many. Don't feel bad if something doesn't work for you or what people think, that has been tough for me, that feeling of letting everyone down. It is a terrible disease, pace yourself, and know you are not alone.

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Replies to "I was diagnosed with fibro/CFDS 30 years ago, got diagnosed with everything from soup to nuts..."

Hello @sarasally2. I always appreciate those before me that have lived so long with chronic illness. The fact that you speak of your challenges and are still here to help others tells me that:

1. It ain't easy, but it's doable

2. There is a huge amount of support out there even if from complete strangers

3. Being thankful because we always know it could be worse

Thanks for the inspiration today!
Rachel

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