When I was DX almost a year ago and started reading and learning everything I could about this disease, I was sad to hear about the many issues with heat intolerance(among many.) I have always loved being outside. Rather working in my yard, reading on my deck, taking walks or just about anything. The hotter the better. So when this past summer arrived I was prepared to change things up because all I heard about this issue. Well....couldn't believe it when our hot and muggy summer here in Cincinnati arrived and it didn't bother me at all! I mean I would sit on my deck in 90 degrees and drip sweat with no repercussions. I recently started going to a gym since running is not the best anymore and while there decided to hit the sauna......YEP, love that too. Is it bizarre my body can handle the heat? Anyone else able to tolerate it? Wondering if the extreme cold will not like me?? Guess I will find out in a few months. Thanks
My Dad also has MS. His whole course of disease resembles mine in no way. Everything is basically neck up and cranial nerve related. He has no heat sensitivity and actually can do a bit of long distance walking in the heat.
I guess it just boils down to where the lesions are located.
I hope you don't mind me asking a question since you brought it up. I remember the first time I got sick in the sun (I didn't get heat stroke or anything like that, the other girls were fine, it just makes me feel not well). I was 14 and it's stayed with me since then. I can't be in the sun at all or I feel sick. But I like the hot tub (although i haven't sat it in awhile because I'm confused on if it makes things worse permenently). How odd MS is that there are so many different symptoms.
Hope being able to enjoy the heat continues for you!
Chescat, my understanding is that it's doesn't cause a relapse or permanent worsening, just slows nerve transmission and temporarily exaggerates your typical symptoms.
Morning, I was dx 6 years ago and like you I love the sun especially being out in my garden. Unfortunately this year is the first year the heat wore me out. Even going out to the trash, if it was hot, so enjoy it.
I am better in the heat than in the cold. I get so stiff & rigid in the cold & my muscles refuse to untighten 😞 I have always loved the sun 😊 I can tell that I get tired more quickly in the heAt now or at least this past summer anyways. Still I can tolerate Summer better than Winter.
Sorry the sun has finally got to you...thinking my time is probably limited 😁
Living in Cincinnati you literally don't know what to expect weather wise. Today getting to 75, tomorrow, you are correct, maybe 40 if lucky with wind and snow flurries 😩
Taking advantage today and gonna rake leaves and cut grass probably for the last time! Hope you have a great weekend 😀
I still can handle our East Tennessee hot, humid summer days, at times, then other times it will suck the strength right out of me. Sometimes I feel like someone pulled a cork out of the bottom of my foot and all my strength drains out in about 2 seconds. After this last attack it has gotten worse, it seems. It was in September, so I will see how much heat, humidity that I can stand next summer. Enjoy it while you can but take care of yourself.
I've never been a huge fan of heat, but it didn't really bother me. I'd sunbath for a tan (yes, I know it is now been found to be horrible for your skin)....I am sooooo pale and don't seem to be able to retain a tan, so I was outdoors quite often to tan and also just to sit in the shade and relax w/ a frosty beverage. Then somewhere in the last 6 yrs I can't seem to spend more than a few mins in it w/ out feeling like I'm suffocating. Not even in the shade. My clothes are wet, my hair is wet. I am almost instantly fatigued. I'm miserable. My husband and baby girl LOVE the outdoors and being in VA, we have extended summer/outdoor weather. I sadly now watch them from the windows. I do believe it is very different from one person to the next.
I am ok with the heat in NC. I have MRIs showing plaques but have no outward symptoms. When I was at MS support group in MI where I moved from last August I felt guilty being "normal" in a group with people in wheelchairs and canes. I have been on Copaxone since June of 1982
Wow geoff60t, you started Copaxone four or five years before I was diagnosed and started Copaxone myself. I then switched to Avonex when I went on disability and later switched to Tysabri which I'm receiving now. I too only need a cane when I know I'm going to be in a crowd when I'm tired. I experience the guilt feelings too whenever I receive my Tysabri infusion in the hospital with six to eight other MS patients who are in wheel chairs, or have other problems associated with their MS. But then I realize that demyelination can occur in different parts of the nervous system in different people.
I know it affects people different and the Coapxone has been doing a dynamite job over the years. My last MRI was a couple months ago and compared to last couple, I get one very 2 or 3 years and no changes over the past few I have had
geoff60t hi there, your a name that l haven't seen before until now. I'm so sorry that l missed ya. As l really do try to welcome e everyone to our chat lm glad to see your jumping right in
I'm on copaxone also. But have only been on it for almost 2yrs. So far so good. If you look at me, l look "normal" unless you really look or listen. Then you can see or hear the subtle differences.
I suppose one’s heat tolerance is related to where they have demyelination. I have lots of demyelination in my brain and I know I get more exhausted when it is hot than when it’s cold.
Before demyelination struck me I loved to be out in the sun bicycling or swimming as much as possible. Ever since demyelination struck when I was living and working in Indianapolis, IN, and ever since I went on disability and moved to Pittsburgh, PA, all I could do regularly was mow the lawn, garden a wee bit, and BBQ dinner, and, then I’ve always had to either sit and rest in the shade or go inside into the air conditioning to get my energy back.
I’ve never tried to use a cooling vest or a bandana. Maybe I’ll try that next year.
My wife and I hadn’t been on a vacation in a couple years so we went to the Outer Banks this year because we love being near the ocean. Even though we happened to pick a time of year when it was exceptionally hot we just went to the beach early in the morning when it was a bit cooler so we could enjoy the sun, the waves, and the breeze which was very relaxing and not too exhausting.
So ever since my diagnosis 30 years ago, I’ve learned to live life in and around the heat even though I have MS.
dmaskal1 l have the cooling wrap that goes around my waist. But l didn't use it last yr. The ice packs are to hard and there is no movement to them. Next yr, l will let them melt some 1st l guess. I do LOVE my neck wraps tho! I keep them in the fridge at all times. And change them up as needed. They are a lifesaver to me. You can find them on Amazon pretty cheap. Or if you know someone that sews, there is a site that tells how to make them. let me know and l will have to find it for you. A friend made mine.
I love the heat and can't tolerate the cold. It's been that way sine my dx in 2000. I can do warm water pool therapy etc and have no issues.
When I get cold I feel like someone has taped or strapped metal to my legs and asked me to walk. It may not become the same for u as ms can be different at times for all of us. U may get lucky so to spend tolerate all seasons.
I love the heat but the heat does not love me. Anymore I stay indoors when it is 80 or above. I also try to avoid the heat in the upper 70's when nothing but wall to wall sunshine.
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