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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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As I said, I’m pretty desperate. I thought maybe someone would see my post who had been through something similar and could maybe offer some suggestions. I have been so let down by our health care system. And I say this as a licensed RN. I understand a doctor not knowing what it is. What I don’t understand is how they can be so flippant about it. When they can’t figure it out, they are not offering suggestions on what else to do or who to see. It’s like they just dismiss me and don’t care if I ever find help.
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1 ReactionYes, I just completed all those labs through an endocrinologist. I’ve had more than one specialist mention dysautonomia, but I had figured that much out on my own. What I don’t know is what’s causing it. Is it primary or secondary to another illness? Until I know that, I don’t have any clue if it can be treated other than symptomatically, which basically means no hope for relief at all.
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1 ReactionThank you for your kind response. It really has been so hard. It began in 2013. That’s when I began chasing an answer. But nobody seemed to have one, so I finally gave up and decided I’d just have to try to live with it. At that time, it was a little bit easier as my body temp rarely got past mid-101s. But for some reason, over the last 3-4 years, it’s all escalated really quickly. For example: it got to 104 Christmas Eve as I mopped my floors. I had turned the heat completely off and it was 6 degrees outside. I left my back door standing open and had a floor fan on me. Saturday, I carried a laundry basket of clothes to my sofa and sat folding them in the coffee table in front of me. A/C set on 64. Ceiling fan on and a floor fan 3’ away blowing directly on me. Temp got to 102.2 and my b/p hit 199/147. I don’t know how to be any more protective of myself than that. That is like absolute least physical activity I could be doing. I can no longer keep my house clean. My daughter can’t have anyone over because I can’t clean my filthy house anymore. It literally feels like it will kill me to try. Just after the laundry episode, I felt sick all day Sunday. I don’t feel great today. It’s hard to keep going when you can no longer even see to your own needs. The only thing that keeps me pushing forward is this amazing kid I have who deserves so much more than I have to give right now.
I am an RN. So I’ve been trying to direct my care myself. Before I just took the initiative to schedule myself with Cleveland, my GP had not even sent me to a specialist. So I changed primary care doctors and that one never would refer me either. I’m seeing if I’m going to get help, I’m going to have to make it all happen myself. Which makes me want to get better and do this for others who don’t have any health care background. We need more patient advocates!
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2 ReactionsThank you. 💞
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1 Reaction@suetex, I admire your positive outlook! IvIg is for severe symptoms.
It would be great to hear about IvIg from a patient. Successes? Side effects? How long have you taken the medication? How fast did you get results? How often do you get an infusion? How long is the treatment? Anything else?
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1 ReactionI've had such issues as you and for me it's, at least, partially a viral thing. I was diagnosed with chronic EBV after I had Mono in High School. When I over do it, the virus attacks.
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1 ReactionI saw an infectious disease specialist who ruled out viral causes. I don’t have any choice other than to keep scratching for answers. I’m just tired.