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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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@mctdfibrofairy. What a great name! Love it. Welcome to Mayo Clinic Connect. Everyone here tries to respond with tips and their experiences.
Your name sure hides the struggles and challenges you have. Have you been able to discuss with your doctor, the decrease in effectiveness of your meds? If so, what have they said about it?
Here is another discussion on MCTD that you might find interesting. You’ll find other members who you can share info with:
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
When we’re you diagnosed?
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1 Reaction@mctdfibrofairy sounds like you live near me!
I have fibromyalgia, Raynaud’s and severe polyneuropathy. I don’t think the incredibly hot springs & summers we have makes any difference to me. I’ve lived in the desert for 37 years.
Now, when the temperature drops I usually do feel achy in the joints, and my feet and fingers need to be kept warm.
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1 ReactionHello! I was dx with Fibromyalgia way back when I was in my 30’s and no one really knew much about anything like that dx. My doc at the time told me to exercise, take a prescribed antidepressant and to “see a shrink”…I cringed at that, but did exercise and began taking every known off branded for fibro antidepressant out there with minimal results. I con’t to feel achey, sore, tired, but not depressed as I was/am very proactive and began my deep dive over the next several decades for a comfort/cure. That was a bust. I con’t by sheer force of my personality to live an active family, social and volunteer life. It was determined that yes, I had symptoms of sjogren’s and raynaud’s.
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1 ReactionWe moved to deep south Texas to enjoy the 55+ life style. We had first retired to east Tennessee. It was hot and humid there in the summer but seldom ever a breeze! In deep south TX, there is NEVER a good hair day, breeze rarely ever quits. I have Myasthenia Gravis (MG) which is also affected by being over-heated. The medication I take for MG says to avoid sunlight. Although I used to love working in my flower beds for brief periods, this summer has been the hottest since we moved here in 2014. No going outside just to be outside! Thank God for A/C! NO HOT STEAMY SHOWERS, using a cooling vest and wearing white, thin long sleeved tops, sun hat, etc., if wanting to do brief 'gardening', cooling down the car before going somewhere, waiting until evening when it gets below 100, staying out of the hot sun and in shade if possible, etc.
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1 ReactionKay, where are you in Deep South Texas? I spend 6 months every year in Palmview. Checked out summer last year, and it was okay, but too far from kids and grands. Maybe when they're older and too busy for us...
Sue
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1 ReactionHarlingen
Yes, there will come a time when the youngers are too busy with their own lives, see it all the time in a 55+.
This summer has been, and still is, the hottest for the longest in seemingly forever!
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1 ReactionThat's where my grandparents lived in the 1960's and 70's,from 1980 to 2005, my parents, aunts and uncles wintered in Donna. Now, my brother and sister-in-law and my husband and I call Palmview home. We just keep wa dering West.
Sue
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1 ReactionPalmview! In the big state of TX, we are neighbors!
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1 ReactionI was diagnosed with M CTD 6 Years ago hot weather kicks my behind I can deal better with cooler weather
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4 ReactionsI 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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3 Reactions