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Cannot Regulate Body Temperature
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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Great info! I have Sjogren’s, don’t sweat, and get overly hot or cold easily. Didn’t realize my balance problem was also related to ANS. Organizing my symptoms helps me cope.
I blamed bad balance on numb feet, my AC1 is normal. This weekend my feet hurt a lot. Last night I realized I don’t have “meat” on the bottom of my feet. 😵💫Sending a message to my internist, thankfully seeing my rheumatologist on Wednesday.
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3 ReactionsWould like to know what treatment you are going to use and how it goes for you as I have Sjogren's.
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1 ReactionI might rocogmend a small fiber byopsy. I am taking IvIg and it does help, just slowly. What are you taking?
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1 ReactionI’m taking Plaquenil and doctor is working through the list of drugs I must try before infusions. Currently on Cellcept. I also take other drugs for Sjogren’s symptoms, dry eye, GERD, etc. It’s crazy. 🤑
Tell me more about the small fiber biopsy. Does it hurt? Is there a big incision? Where? How long is the procedure? I will need wound care, slow healer. Ugh.
Also, is IVIG a capsule? What drugs do you take for Sjogren’s?
Talked with my internist this this morning. He’ll work with my Rheumatologist after my appointment on Wednesday. Although I trust both doctors, knowledge helps me ask the important questions. Thank you for your response.
The small fiber byopsy is very minimal with 3 punches at the ankle, knee and shoulder blade that each require a band-aide. Right or left is up to you. I had my neurologist (who did my EMG) do mine and even 'though I had no sensory symptoms I had a very positive SFB. The SF is part of the autonomic nervous system. I was on Plaquinel until IvIg which is an infusion you take every 3 weeks probably for the rest of my life. Or until they come up with a drug for us which they are working on. Look for articles and newsletters about Sjogren's. They are a good source of info.
I looked up Cellcept (because I hadn't heard of it). Do you have a transplant of some sort? It is probably why you don't heal easily.
My diagnosis was less than two years ago and I am going through the process of testing different drugs and doses. before I start infusions. First was methotrexate, a cancer med. My WBC count went to LL. Next was Cellcept. I hope to never have the diseases associated with these meds.
I can relate. I sweat so much and so fast. With any activity at all
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
May be experiencing the same issue. : ( Terrible after my 4th bout of COVID. Maybe the vaccine? Soaking sheets and pj’s every night, with intermittent shiver spells. Totally uncomfortable and my sleep is so impaired. Never a restful sleep and I wake up very fatigued.