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MCTD, Fibromyalgia, and Hot Weather - Oh My!
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
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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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7 ReactionsBy 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
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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1 ReactionI am super late to this conversation. I was finally diagnosed last summer. The past few years I have been more sensitive to the heat. I have been in a constant flare for the past year and it’s unbearable!
I live in the Midwest, this spring has been very pleasant so far, a real spring. The past few weeks the April showers have driven the humidity up. It’s been in the mid 60’s to low 70’s with a breeze. The humidity is worse than ever. My fingers swell up so puffy it hurts to bend them. I get so hot and sweaty from little activity outside. It takes hours to cool off and even longer for my finger swelling to go down.
So far, my rheumatologist says I do not have reynaud’s, no color change just super puffy. I’m only taking meloxicam for my arthritis pain. She said she’s considering changing me to hydroxychloroquine. That was months ago but she hasn’t changed my meds, now she’s watching my bloodwork. I’m miserable!
Any advice on how to deal with the heat would be appreciated. Or does anyone know how to make the swollen fingers recover quickly?
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2 ReactionsMine started with seizures and migraines as a kid and evolved into a ridiculous diagnoses list a mile long, like many here. Thank goodness there’s a blood antibody test for the worst one so I don’t have to prove myself to anyone. All I can say is after harnessing electricity, air conditioning and heat is mankind’s best invention, otherwise I would have to move every season. I hope everyone here does well
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2 ReactionsHi there. I’m wondering if I should live in a dry hot environment. I presently live in Fort Wayne IN. Humidity kills!
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2 ReactionsI have had fibromyalgia symptoms for years, but no diagnosis. For me high humidity = pain and stiffness. We got a dehumidifier for our condo, and it has helped tremendously. I'm in Chicagoland.
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2 ReactionsI was diagnosed with an autoimmune disorder in 2010. I lived in Oklahoma. It was a real struggle to get symptoms under control with medication. I was okay from October to April, but oh my stars, once it got hot, my symptoms flare. I also recognized how easy it is to get heat exhaustion and the recovery took considerable time. Since moving to WI, I have had very few flares. In the last heatwave, I struggled but it does cool down at night, thank goodness. I try to not go out when it is anything over 85, but you have to live, right!
So yes, my body with an autoimmune disease does not do heat well.
🐝 KIND
Heat will indeed worsen symptoms. It makes me very fatigued. I have MCTD. All kinds of things worsen symptoms: stress, intense concentration, exercising too vigorously. It's a pain in the ass. Luckily, plaquenil has helped dry mouth and prevented progression to the bad things for the 2 years I've had it. Good luck.