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Autoimmune & temperature regulation: How do you get warm?

Posted by 1corinthians926 @1corinthians926, Jan 18, 2019

Does anyone have issues getting and staying warm? I am especially having this problem in large buildings with any AC. I often have to wear a hat and gloves indoors. I also have many blankets on my bed and still sleep in pants, sweatshirt, hat, and gloves. Maybe this is completely unrelated to autoimmune disease, just want to check with others.

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

1corinthians926 | @1corinthians926 | Jan 22, 2019
In reply to @sammiray0921 "New to Mayo and thrilled to hear from others! Like many, I too have difficulty with..." + (show)
@sammiray0921

New to Mayo and thrilled to hear from others! Like many, I too have difficulty with temperature control. Within an hours time I can boil over in sweat that can not be cooled that transitions into goose bumps on my skin boiling on the inside while skin is freezing then transitioning to freezing cold that can not be warmed.

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This is how it is for me too. One moment I am freezing cold and an hour later I am boiling.

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beryl | @beryl | Jan 23, 2019
In reply to @noosat1 "Thanks Beryl, The PMR is worse in my legs, especially the left one. Just before I..." + (show)
@noosat1

Thanks Beryl, The PMR is worse in my legs, especially the left one. Just before I was diagnosed I got shingles, which I knew nothing of, on my left buttock. I find that is the leg that is most affected by the PMR. Frustrating, because when I was a runner my left was my strong lead leg. Oh well, must be grateful for what I can do. Sitting for a long time may seem pleasant to me, but I know it is not beneficial. Right now I am doing internet research for a paper I will give to small group in March, so every 20 minutes at most I make myself get up and walk around.

Cheere, Maggie

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It seems PMR strikes the very fit , nobody understands this and my Rheumatolgist said to me ...."You work it out and tell me " does seem strange though doesn't it? Any ideas anyone ......Beryl

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1 reply
ckeys | @ckeys | Jan 23, 2019

I have autoimmune disorder primarily caused or the cause of lymphoma. I go from being incredibly warm, to being unusually cold. When I’m cold everything hurts. I sweat a lot even when I’m not warm, but profusely when I am warm. It is a constant adjusting game. I wish you the best and do what feels right. I have tons of fans and also tons of heating blankets around that I use as needed.

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noosat1 | @noosat1 | Jan 23, 2019
In reply to @beryl "It seems PMR strikes the very fit , nobody understands this and my Rheumatolgist said to..." + (show)
@beryl

It seems PMR strikes the very fit , nobody understands this and my Rheumatolgist said to me ...."You work it out and tell me " does seem strange though doesn't it? Any ideas anyone ......Beryl

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Yes, Beryl t is a mystery. I ran competitively, played tennis and pickleball, mountain hiked, I never thought that as I got old my good strong legs would fail me. 🙂

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1 reply
beryl | @beryl | Jan 23, 2019
In reply to @noosat1 "Yes, Beryl t is a mystery. I ran competitively, played tennis and pickleball, mountain hiked, I..." + (show)
@noosat1

Yes, Beryl t is a mystery. I ran competitively, played tennis and pickleball, mountain hiked, I never thought that as I got old my good strong legs would fail me. 🙂

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I know that is the thing I hate most always had the strongest legs and could walk forever.....we hope we get a bit of this back
I miss it ......Bery.

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SammiRay | @sammiray0921 | Jan 23, 2019

Good morning everyone I certainly hope that you’re doing well today. From the above, the only thing I can really gather is that it appears to be an auto immune “side effect” but from what, no one knows. In addition, it does not sound that there’s really any type of treatment to stop the madness. You don’t know how very disappointing that is for me personally. So many issues that I have appear to be that way - without answers. I am so hopeful that my upcoming trip to Mayo will enlighten me in someway. Certainly hope the cost financialky and the cist emotionally will be worth it.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 23, 2019
In reply to @sammiray0921 "Good morning everyone I certainly hope that you’re doing well today. From the above, the only..." + (show)
@sammiray0921

Good morning everyone I certainly hope that you’re doing well today. From the above, the only thing I can really gather is that it appears to be an auto immune “side effect” but from what, no one knows. In addition, it does not sound that there’s really any type of treatment to stop the madness. You don’t know how very disappointing that is for me personally. So many issues that I have appear to be that way - without answers. I am so hopeful that my upcoming trip to Mayo will enlighten me in someway. Certainly hope the cost financialky and the cist emotionally will be worth it.

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@sammiray0921, I hope you get some answers and a treatment plan that helps. One of the things that may help you is to keep a log of your symptoms, pain levels, and any questions you want to ask the doctors. This will help you communicate a little easier with the doctors. There is a discussion that may provide some suggestions for your Mayo appointment.

Groups >Visiting Mayo Clinic > Your Tips on How to Get Off to the Best Start with a New Specialist
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Which Mayo Clinic Campus will you be going to? Other members may be able to offer some additional suggestions.

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noosat1 | @noosat1 | Jan 23, 2019

Has anyone tried ginseng for inflammation? I have some from Korea, red ginseng. Although not recommended by physicians because no real testing, I read that some people use it for a number of medical conditions, including inflammation in system

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lioness | @lioness | Jan 23, 2019

@noosat1 Hi I haven't heard of red ginseng but I take Tumeric @ginger for inflammation

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noosat1 | @noosat1 | Jan 24, 2019

I must try turmeric. I do make ginger water/tea. Garlic is also good for what ails us. 🙂

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