MCTD, Fibromyalgia, and Hot Weather - Oh My!

Posted by mctdfibrofairy @mctdfibrofairy, Sep 9, 2023

Hello all,

I am writing at the end of both summer and my wits! I have been diagnosed with MCTD, fibro, celiac, reynauds, neuropathy.... the list goes on. About a year ago I finally got proactive and addressed everything medically, and made a lot of changes (diet, lifestyle, meds) that have really transformed my life!! Amazing.

BUT, I live in a super hot climate, and I find that every time the heat spikes it's just flare city for me. Just everything... I don't need to detail, I'm sure you can imagine. I grew up in the deep south and was always sensitive to the heat. Here it is less humid (phew) but very hot for about five months out of the year.

The last couple years I've made it a priority to get out of town during the hottest months -- I was a professor, so this worked with my schedule -- but I'm changing jobs (for my health!) and wondering if I need to change my location permanently, too. It's discouraging to see that even this year, with my arsenal of meds and changes, it's still totally kicking my butt. The meds are so much less effective in the heat. I'm lucky to have a great place to live and wonderful AC, but I do have to, you know, live life.

Has anyone else moved to get out of the heat, and had it go well, poorly, or otherwise? I am very active and already know that I thrive in cool (and even cold) climates, and know how to stay appropriately warm, so that is not an issue.

The heat is just puzzling because I don't FEEL like I get too hot. Feeling hot is fine. It's what it does to my nerves body and brain that's hard to deal with. It's taken me years to recognize this, but there seems to be a clear pattern throughout my life of having a really hard time in the heat and not really noticing it.

Thank you all!
-MFFairy

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

When I was evaluated for fibromyalgia at Mayo in Rochester, I recall the doctor saying that fibromyalgia patients have a small window of temperature comfort. I cannot take cool or cold temps. I immediately tense all my muscles and then ache. Warmth, on the other hand, makes everything feel better. We are all different which is what makes our disease difficult to diagnose and difficult to treat. I look forward to my hot bath each night. That doesn’t work for others.

I have Sjogren’s, Raynaud’s, GERD, migraines, peripheral neuropathy, and a long list of other “stuff”. We find what works best for us. For me CBT has helped a lot.

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@covidstinks2023

I have had fibromyaglia and questionable Lupus or MCTD. The summers are brutal with the high humidity & heat. I hurt worse & have not energy. Thank you for posting this. Prayers & Blessings to all. Love & Prayers, Pam/Eph. 3:20

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By your name did you get covid also in 2023 or before. I got a positive test aug 20. 2022 and not long cant get rid of it. Fibromyaglia flare up bad but same as the covid plus now sob seeing pulmonary now. Any help with covid/fibro thanks

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@leslon

By your name did you get covid also in 2023 or before. I got a positive test aug 20. 2022 and not long cant get rid of it. Fibromyaglia flare up bad but same as the covid plus now sob seeing pulmonary now. Any help with covid/fibro thanks

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No, I tested positive for Covid on August 19, 2022. I am awaiting a pulmonary appointment due to chronic asthmatic bronchitis and I had pneumonia again this summer. Covid flared up the fibro, arthritis, GERD & I have a new autoimmune disease that the jury is still out as far as giving it a name. I am seeing an Integrative Medicine doctor and got an I.V. infusion last week to hopefully boost my immune system. I go again in 3 weeks. I was diagnosed with long Covid this past July. Praying for you. God Bless You.

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