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    #16
    I still have the same amount of heat intolerance as I did years ago. I am also cold intolerant and that has gotten worse. It's a discussion I have had with my Neurologist and he said unless there is a problem with my Thyroid - it's MS related. Great, just great.

    It's extremely difficult to get warm without causing problems with the MS. And it's extremely difficult to cool down without causing problems with the MS. I think this would be a catch-22
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #17
      Originally posted by SNOOPY View Post
      I still have the same amount of heat intolerance as I did years ago. I am also cold intolerant and that has gotten worse. It's a discussion I have had with my Neurologist and he said unless there is a problem with my Thyroid - it's MS related. Great, just great.

      It's extremely difficult to get warm without causing problems with the MS. And it's extremely difficult to cool down without causing problems with the MS. I think this would be a catch-22
      Yes, it is a catch-22! Heat and humidity are not my friends! Too cold and I have issues as well, my neuro beieves I have mild Raynaud's. Throw in one of my other issues, hyperthyroidism, and it gets even more complicated! Last summer was really tough for me with the heat and I spent most of the summer with cooling towels draped all over me. My endocrinologist went back and looked at my labs over the last couple of years and believes that the methimazole is working to keep my thyroid in check. Since there were no noticeable changes in my labs, my heat intolerance was attributed to MS. I have my cooling towels at the ready!

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        #18
        The heat has always been a killer for me. I was thinking it was getting worse as I got older but maybe it is because of progression. Never even thought of that.
        wendy

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          #19
          Originally posted by MS TOO View Post
          my neuro beieves I have mild Raynaud's.
          I was diagnosed with Raynaud's about 3 years ago. The Rheumatologist did say it was mild. I suspected I had Raynaud's because my daughter has had it since about 6th grade (she is now 28 years old). She experiences it much worse than what I have noticed it with myself. We both use hand warmers in our gloves during the winter. I have been known to use the hand warmers around the house even in summers (due to air conditioning).
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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            #20
            My comfortable temperature range is very small. It ranges from around 72-82. As I get older, the heat bothers me a little less. I can now go walk in the evening as long as the temperature is around 90 or below and there is not a lot of direct sunlight. I'm not sure if my improved hearing tolerance is a result of aging or of my MS treatment over the years.

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              #21
              I am also noticing that I am becoming more heat intolerant every year. We have had a few really hot days already and it obvious that my cognitive function was affected. I’ve been making about 60/covid masks this spring for friends and family. Working on the last one I noticed simple things like threading the maching seemed a struggle. I compare our bodies to electrical devices. They never work in the heat.

              Electrical equipment in hospitals have to be operated in very cool areas because electricity conducts better in the cool. I liken our nervous systems to electrical wiring.

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                #22
                Originally posted by palmtree View Post
                I am also noticing that I am becoming more heat intolerant every year. We have had a few really hot days already and it obvious that my cognitive function was affected. I’ve been making about 60/covid masks this spring for friends and family. Working on the last one I noticed simple things like threading the maching seemed a struggle. I compare our bodies to electrical devices. They never work in the heat.

                Electrical equipment in hospitals have to be operated in very cool areas because electricity conducts better in the cool. I liken our nervous systems to electrical wiring.
                I tell friends and family that I am like a computer and I have to be cool to operate! I have fans in nearly every room, at work and have to make sure the AC in my cars is always working properly. My wife is really honed in on me now and can notice when I've overdone it as my walking and movement gets worse, subtle at first, but she notices. I can't fool her anymore and tell her I am fine!

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                  #23
                  I have to agree with KoKo. I Have noticed the last couple of years the heat has made it more difficult to move. If I'm out in the heat with high humidity my legs go rubbery and I have no strength. It makes it really difficult to transfer. I try to walk with my fore arm crutches as much as I can, but if it's going to be hot and humid out I just go out in my electric chair

                  The cold affects me the same way also, My muscles stiffen up

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                    #24
                    Originally posted by KatW View Post
                    My comfortable temperature range is very small....As I get older, the heat bothers me a little less.
                    I cannot tell you how much that mirrors me!

                    Who would've thought there were upsides to getting old.
                    59M / RRMS / Dx1987 / Ocrevus

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                      #25
                      Maybe, but hard to tell

                      I live about a mile East of the Pacific Ocean, so if I stick around the coast, the temps are pretty nice, like 55-68 all Summer, 40-50 in the Winter months.

                      If I want to be punished severely I can drive up to Sacramento in the Summer time. It's like a 110F. Dreadful. I guess people with MS that live in the Sacramento valley just stay home with the A/C or swamp cooler. I don't think I could tolerate that kind of heat all day, and the 85 F at night.

                      Gimme a nice cold or cool day, and I 'll just wear a sweater!
                      Jim S.

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                        #26
                        Originally posted by jstinnett View Post

                        Gimme a nice cold or cool day, and I 'll just wear a sweater!
                        I second that! Never hot enough for my husband and for ne, anything above 75 does me in. So we joke he will retire to Florida and me, Maine!
                        Kathy
                        DX 01/06, currently on Tysabri

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                          #27
                          I've always been grateful that temperatures (either hot or cold) don't seem to affect my symptoms of MS.
                          ~ Faith
                          MSWorld Volunteer -- Moderator since JUN2012
                          (now a Mimibug)

                          Symptoms began in JAN02
                          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                          .

                          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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                            #28
                            Mine has definitely worsened over the (many) years. The last several summers have been impossible for me to function. This summer has been especially rough because we’ve been experiencing a really hot summer in the Chicago area.

                            I generally go into hibernation in the summer with a few exceptions to go swimming when weather is close to or under 80. This summer I can’t even do that because everything is closed.

                            I did foolishly go out to run an errand with my husband and teen last night when it was reading 96 outside. I figured it would be quick but just being outside and walking a couple blocks in the high humidity with a mask on took a lot out of me.

                            I felt a little miserable last night but felt better later at night. Then I slept horribly and today I feel like jello. It took me a while to figure out that just being out in that heat for a half hour last night was enough to knock the wind out of me today. My legs are wobbly. I’m ridiculously exhausted. It’s really hot today through the rest of the week so I’m staying inside this time.

                            I need to stop trying to go out when it’s that hot, it never ends well for me.

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