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I couldn't find one, so I've created a group for Autoimmune Disorders and Rare Disorders.

Feel free to join and share what helps and what hurts. Bitching about exhaustion and pain is encouraged, and so is developing friends so we can cry on each other's shoulders on the bad days.

TaraMarshall 7 Mar 20
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Enjoy being online again!

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8 comments

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I have Psoriatic Arthritis, Fibromyalgia, Ankylosing Spondylitis, Hashimotos. Absolutely miserable....have no idea who this "new normal" version of me is supposed to be living with debilitating pain and fatigue.

I have a couple dozen diagnoses too. It seems every time I visit the doctor, they add another diagnosis to the list.

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I don't have the disposable income nor the patience & fortitude to argue with my insurance company to get a diagnosus of celiacs so after 18 months & $2000 out of pocket, they can tell me the 3 issues I don't have (diabetes, issues with cortisol, adrenal fatigue). But, if eating gluten free makes me feel better, thats great. So, I get to be "1 of those people" who avoids gluten like the plague but i try not to be "1 of those people" demanding others bend over backwards to accommodate my eating (good thing I love to cook). They still don't know why commercial beef makes me violently ill & laid out for 3 days.

Sometimes Lyme Disease will induce that with red meat. I have a friend with that problem.

@TaraMarshall was tested repeatedly for lyme (I live in the boonies) , dengue (no), chikungunya (no), west nile (had that..live across from a horse farm). I can eat bison, & grass fed, no hormones/antibiotic beef ok but the cost is astronomical so its a very rare treat.

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Psoriasis, painful, maddening, and arthritis to boot.

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Ulcerative colitis. Embarrassing, uncomfortable, painful (at times) and smelly. Not good

Celiac with IBS-C here. I sympathize.

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I would love a link.

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Is there a link?

[agnostic.com]

Don't know how to do that yet, but if you search in groups for Autoimmune, you should find it.

all set thanks.

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Type 1 Diabetic here. I'd love to join, and bitch. 🙂 Thanks.

Same here

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I love it! Yesterday I found myself explaining to a colleague that I have zero energy for self improvement or chasing the latest miracle cure. All the magic bullets require time and money, neither of which I have an inexhaustible supply of. I have a demanding career, a large extended family, a spouse who expects me to be an active participant in their life, a I take good care of my home. With a chronic pain condition to come along and disrupt all of that every week, I'm reduced to taking some pills and getting on with it. And collapsing when I can't get on with it. With more time/money/vim and vigor, I'm sure I could work in a rigorous self care routine as well! Tired of being judged. To the blessed healthy I just want to say You try this! Let's see how well You manage to accomplish all I accomplish given my health challenges. Nope? Didn't think so!

There's no such thing as a magic bullet, but sometimes little things can help. I chase children for a living!

You are right. A lot of little things help.

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