Cannot Regulate Body Temperature

Posted by ladybarlow @ladybarlow, May 17 11:31pm

I am at the end of my rope. I am having issues regulating my body temperature and no one can seem to tell me what is wrong with me. I’ve seen several specialists and no one seems to he able to provide a diagnosis. Most seem pretty quick to tell me that it doesn’t seem to relate to their specialty. It feels like no one even is trying to help. This has been an issue for more than ten years, but has significantly worsened over the last 4 years or so. Every time I get at all active, my body temp starts to increase. Ambient temperature doesn’t seem to have much bearing on the body temp. I don’t have a problem with the other end of the spectrum. I don’t seem to get cold. Almost never. Even when the environment is quite cool. It’s gotten to the point where I can’t even take care of my home and self-care is difficult. I just started checking my blood pressure when this is happening and I’m learning it is increased as well. It normally runs fairly low but is getting really high when my temp gets up. I’m seriously afraid of heatstroke or a stroke just trying to clean my house or fold my laundry. I’ve have multiple appointments locally and have also been seen more than once at Cleveland Clinic. I have a teenage daughter and I’m terrified that I’m going to leave her without a mom because I can’t get any answers. Where do I go from here? How do I get someone to help me and not just push me off into another specialty because they don’t know what is causing this?

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Profile picture for suetex @suetex

Not sure about the Lupus connection but I do have hard earned info about Sjogren's. I do know that Sjogren's can take out the small fibers that effect the long fibers that are the autonomic nervous system that are your temperature controls. They also tell the body where it is in relation to every else which effects your balance, which is what I have. Took us awhile to figure it out and I still have balance problems. So there you have it in a nutshell.

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May I ask what tests they did to determine this.

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Profile picture for ladybarlow @ladybarlow

I will be happy to share as I go. Right now, he wants to try Plaqenil again. I’ve already done it once and I didn’t notice any improvement. But because it has fewer side effects than a lot of the meds, he wants to give that one more try. I also take Cevimeline for my dry mouth. That has helped a lot with the ulcers I got on my tongue and inside my cheeks

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Thank you for your reply. I was taken off Plaqueil when I started IvIg. Looking at it as sort of the "Big guns" of treatment. Let me know your progress.

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Profile picture for lewin @lewin

May I ask what tests they did to determine this.

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First I had my neurologist (He did my EMG also) do a Small fiber byopsy, even 'though I had no symptoms I was very positive. Then my rhummy look for and found antibodies that indecated Sjogren's. (Blood work) Sjogren's is an autoimmune disease that can attack many systems. After you have had SF problems for awhile, they can influence the Large fibers that are your autonomic nervous system, and that are involved in a lot of systems. You can start to have problems with body temp control, balance to name a few.

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Profile picture for suetex @suetex

First I had my neurologist (He did my EMG also) do a Small fiber byopsy, even 'though I had no symptoms I was very positive. Then my rhummy look for and found antibodies that indecated Sjogren's. (Blood work) Sjogren's is an autoimmune disease that can attack many systems. After you have had SF problems for awhile, they can influence the Large fibers that are your autonomic nervous system, and that are involved in a lot of systems. You can start to have problems with body temp control, balance to name a few.

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Thank you. I had Therapath lab test sweat gland fibers after I was diagnosed with SFN. It was negative. I think I have had pre-diabetes for long time and that is the reason for small fiber neuropathy/

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