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Calling all AUTOIMMUNE sleevers

I there! I just figured out how to create a support group for autoimmune sleevers. If several of us join and start posting there, we might be able to create a place for those of us with RA, psoriatric arthritis, hashimotos, lupus, SA, etc. I set it to public so anyone can join. Pls join if this pertains to you, and invite your forum friends as well.

I'm a support group creation virgin so be gentle with me if I screwed it up. Here's the link (I hope!)

http://www.verticalsleevetalk.com/groups/show/269-autoimmune-sleevers/

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  • deedadumble
    deedadumble

    I'm in. I have multiple AI disorders... PCOS, Hashimotos, and Lichen Planus (Oral). I also am being treated for Fibromyalgia, although I am starting to become convinced that my pain may be from extrem

  • deedadumble
    deedadumble

    Yes. I think the Vit D helps a bunch with my all over pain. When I first had issues about 2.5 years ago, my level was 11. I was put on 50,000IU a week and that barely raised it. Then I was put on 100,

  • Anyone have celiac disease?

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I don't know about everybody else but I was prompted to download an app called BariatricPal and it's everything seems to be in the app format instead of having to go to the website

I didn't see where to join...if I understand correctly I have to be on a computer?? I have psoriasis as well as lichen planus and wanted to join.

  • Author

Redbean I think the groups kind of got lost in the transition. Let me see if I can find it again.

  • Author

all right, here's the new link. I still haven't figured out how to access it from a mobile device. I'll give Alex a few days of breathing room before I hit him with this one :)

http://www.bariatricpal.com/groups/357-autoimmune-sleevers/

  • 2 weeks later...

I have fibromyalgia and it has been horrible the last 3 weeks. I can barely walk and the headaches are non stop. I was wondering if my loss of 48 pounds in 3 months has caused the increased pain, but reading this topic I am wondering if it is a lack of vit. D. I am going to try to up my dose and see if things improve. I am so tired of not feeling good. I can not even walk, which I really enjoy.

  • Author

I have fibromyalgia and it has been horrible the last 3 weeks. I can barely walk and the headaches are non stop. I was wondering if my loss of 48 pounds in 3 months has caused the increased pain, but reading this topic I am wondering if it is a lack of vit. D. I am going to try to up my dose and see if things improve. I am so tired of not feeling good. I can not even walk, which I really enjoy.

Interestingly, I almost feel like I'm having more flareups too but I don't know if that's because I want to be more active now, and so perhaps I notice it more when I can't go walk or do something I want to do.

I do know that in between flares, I hurt a lot less so I count that as a blessing. You may need your pain/fibro meds adjusted perhaps? Mine have been adjusted downward but perhaps yours need increasing or you may need something different. Maybe time for a phone call to the doc?

Gamergirl, I woke up feeling better today so I am hoping that the increased D vit, is going to be the help I need. Believe it or not I only take tylenol or Ibuprofen for my really bad flareups. I failed on all the others. So I gut it out most flare ups with just conventional over the counter meds. Yesterday's flare up was a doozy, but today I feel better. I did also take a walk which maybe made me feel better(even if I limped along). I have a curious type of Fibro which is only really bad enough to whine about 2-3 months out of the year,the rest of the time the pain, I perceive, is mild 3-4 on a 1- 10 scale, so I just keep moving. Yesterday was a 10+. I also remember someone, maybe you, posting about having pain after losing weight. Its like all my joints are loose and my bones seem to be clicking in places they never clicked before. I think an adjustment by a DO is in order. I think you are right a trip to the DR is in order.

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