Announcement

Collapse
No announcement yet.

Heat Intolerance

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    I melt above 65 degrees

    Heat intolerence has been an issue for me since day 1. It has been getting worse (meaning that the temp. I can tolerate gets lower and lower).

    Most times it starts with simply getting up in the morning. Within half an hour my head catches fire from within. Sweat dripping off my face and my hair is damp at the scalp. This heat wave goes on until I lay down (after getting the kids to school) and sleep for a few hours. Even the most simple of tasks can melt me making my limbs weak and my tremors get worse.

    When I am outside, which is my favorite place to be, I have to sit in the shade, and not for long only if there is a breeze.

    I miss my gardening. Walks in the woods.

    Mostly the heat intolerance has taken alot from my kids and me...I can no longer go to the beach with them (except in the fall/winter). Teach them about all the amazing things they can find in the woods and feeling the serenity of simply leaning up against a tree, sitting, looking up, looking down, getting up close. Experiencing getting dirt under your nails, working hard on a flower bed and seeing what reward comes when they bloom. I miss out on a lot with my kids, and they don't have me there with them for their experiences.

    Cris

    Comment


      #17
      I live in the South & it's been heating up kinda eirly. I can't take anything over 75o/o. So I have a feeling it's going to be a bad summer. I just stay in my room w. all the sun blocked out. I CAN"T TAKE ANY HEAT!! you're not alone.
      God Bless Nona Judy

      Comment


        #18
        jankel

        Anyone else having this type of problem and any ideas on what to do? I feel like such a freak because you can actually see my face, arms, neck and legs getting redder and redder as the heat increases. Never mind the other MS symptoms that come out to play when I get hot (smile).
        When my body temperature rises, I lose strength and have extreme weakness. If I don't get cooled down quickly, often times I can barely move at all, (arms, legs, trunk - whole body) which is scary.

        Remember the effects of Kryptonite on Superman? -immediate debilitation, removal of energy and powers.

        That's what heat/increase in body temperature does to me!

        Also, want to mention that as the MS has progressed, the degree to which the heat affects me has increased. It didn't totally debilitate me 12 years ago.

        (I'm one of the lucky ones too with cold temperature intolerance, but that's another topic).

        Keep cool!

        Take care,
        KoKo
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #19
          not sure if I have it, but will soon find out...

          I was just diagnosed last October, with very few symptoms (optic neuritis mainly and some generalized fatigue). Luckily I live in a very cool, ideal climate for this disease -- doesn't get over 75 except for a very few days each summer of 80-85. However, in order to see my daughters and grandsons, I will be traveling to Arizona IN JUNE this year. If I didn't want to see them so badly, I wouldn't go, but I haven't seen them for awhile, so I'm gonna bite the bullet and go.

          But I am somewhat concerned about whether the heat will affect me adversely or maybe not, given my real lack of symptoms. Could it possibly be the start of symptoms if I'm in the heat? My ophthalmologist suggested that I note whether I have Uthoff's when I am in the heat, so I will be on the lookout. Luckily, my daughter has a/c, but I'm worried about going out and about with the kiddos. So any insights would be helpful.

          Thanks, Andi

          Comment


            #20
            I can definitely understand what you mean. My apartment stays between 60 - 68 degrees Fahrenheit during the summer just because I can't tolerate much beyond 68 before I start having problems. It took an entire summer of figuring out where my "happy temeperatures" were but we managed to pinpoint it.

            For me it feels like I'm boiling from the inside out. My blood itself feels like it's burning me. If I don't get to a cool place and cool off fast then I start feeling extremely weak and it will progress into feeling very sick. Last summer I could walk down a flight of stairs and out to the vehicle before I started feeling crummy, all because of heat. Unfortunately I've yet to figure out how to enjoy my summers except for using swimming as a way to be outside. For some reason being in the water, even lukewarm water, I'm able to stay cool enough to be outside for 3-4 hours. A friend of mine is getting me a cooling vest so I'd definitely suggest getting one if possible.

            Good luck!
            Dx RR MS - April 1st, 2010. (19 yrs old)
            Words To Live By: "Fall Seven Times; Stand Up Eight."

            Comment


              #21
              Yes yes yes! This is HORRIBLE for me! If its above 65-70 degrees, it isn't pretty. I also sweat in my underwear area and my underwear becomes soaked as do the armpits of my shirt sleeve. I always think I have a temperature and run for the thermometer and I'm always below average temp and I just find myself in disbelief. I should learn by now, I'm not going to have a temp because its internal!

              Comment


                #22
                I have the same intolerance to heat as you, you can see my face turn red as well.

                The MS Institute here where I live does fund raising to purchase cooling vests for patients locally free of charge (check into your area MS Society) If not, I think you can contact polar tec.

                Long story short, it was about 70 this past weekend and I had some outdoor stuff to do, I started getting really overheated and put on my cooling kit and felt better within about an hour. They do work!

                Good luck!
                Hope for the best, prepare for the worst and that way you have all your bases covered.

                Comment


                  #23
                  Heat kills me - I need to relocate

                  Hi there

                  I know just how you feel about heat intolerance (I put on separate post on here in April). It is ruining my marriage and my quality of life 4/5 months a year, because I need to relocate and can't right know). Even my Neurologist and professor in MS say I need to live in a cooler climate to have a better quality of life.

                  I believe I have had MS since 1998 but not diagnosed until 2010 and diagnosed in 2006 with Chronic Fatigue Syndrome. Moved to USA from UK in 1989 to Florida and couldn't stand the humidity and because I had never been bothered by the sun before getting sick I falsely assumed it was the humidity that caused my heat intolerance.

                  Had I known I had MS I WOULD NEVER have moved to Las Vegas - I thought the dry climate would be better!!! yeah right - heat is heat and 100+ degree summers for the last 7 years in Vegas I am at my end of tolerance for this. Each year my tolerance level goes down and so this summer I am going to UK for 10 weeks. Not a long-term solution in my marriage but have to figure out a way to get in a cooler climate to live permanently.

                  The heat totally takes away from me my quality of life and I have all the cooling products but they just DON'T work for me when the temperature is so hot. I get too stressed in the heat and am not the type of person who can live indoors for months on end as I don't do well with the A/C either as it makes me congested and gives me a headache.

                  You can try the cooling products as they may hopefully work for you.... But as my MS gets worse my heat tolerance level has gone down. I love the low 60s and below or maximum of 80 degrees is perfect but that is my limit or I get so many MS symptoms flaring up and fatigue is unbearble and I turn really, really cranky and get severely agitated that I am no fun to be in anyone's company either!!

                  Good luck to you: soo many people have this Heat Intolerance with MS but we are all different in our tolerance levels.

                  Right now if I could be put in a self-induced coma until the summer has gone or live in a refrigerator would be just perfect!!!

                  Hugs
                  Diane

                  Comment


                    #24
                    Originally posted by Thinkimjob View Post
                    Oh yes. It gets up to 42 degrees Celsius most days in summer round here. I stay inside as much as possible.
                    And hot showers are a thing of the past, too. I used to love a hot water bottle, or an electric blanket in winter. No more. If I lie on an electric blanket, I can hardly get out of bed after ten minutes.
                    No more lovely warm baths. No more jacuzzis, and certainly no more saunas.
                    Even a bloody hairdryer is out!
                    Our house is air conditioner city. Everyone else is freezing to death, but I figure they can put on some more clothes - I'm not going nude. For which they are, no doubt, eternally grateful.
                    Can't wait for menopause.
                    I understand about hot showers and baths. While I can still manage hot showers when it's cold, when the temperature hits decent, I can't any longer. The other day (a particularly bad one for me in this flare), my husband thought a bath would help me feel better. Well, duh, I forgot, it was hot, and a hot bath does not go well with active MS symptoms. I felt worse the rest of the day, and ended up on the couch for most of the day, asleep or dozing.
                    Diagnosis: May, 2008
                    Avonex, Copaxone, Tysabri starting 8/17/11

                    Comment


                      #25
                      Heat

                      This heat intolerance causes me to be weak, can't walk and feel like I am going to pass out. Can't think straight either.


                      I use a cane to walk and a wheelchair to go long distance. Swimming to me is freedom from myself. I don't know how else to explain it.

                      I am still learning the new me and this is what I can do in the summer heat:

                      I work on my garden around 3 am with the help of a spot light and the cooperation of my body that night. I use my cooling vest if needed.

                      I go to the local swimming pool to be outside if the water temperature is not to hot. I could also go to the local recreation center to swim too.

                      I welcome more suggestions to cope with the heat and to improve quality of life.

                      Thank you

                      Comment


                        #26
                        I had heat stroke a few years before my MS dx. Haven't been able to tolerate the heat much ever since then.

                        But now I have a new wrinkle. When I get too hot my heart rate goes up. I was outside today, grilling meat and I felt miserable. Came in a tested my heart rate with a finger oximeter and it was 110. Came down as I cooled off.

                        So, is this part of the MS heat intollerance??
                        Marti




                        The only cure for insomnia is to get more sleep.

                        Comment


                          #27
                          I get it to even when it is in the upper 70's, People look at me like I am crazy. I am going to check into getting a cooling vest ASAP!

                          Comment


                            #28
                            Me too!!

                            I have had issues with heat even since I was a teenager. I used to show horses and when the heat would really set in I would pass out in the middle of a class. We always thought it was because I didn't eat enough so I would eat all day long, never helped though Now I can feel when the heat is getting to me because my breathing gets different, I don't know how to explain it but I know then it's time to get in a cold shower or I'll be kissing the ground

                            It's really crazy I freeze in the winter and suffer from the heat in the summer....ugh...I need a more stabilized climate! 70's and nooooo humidity
                            Love, Laugh, Live...in this order
                            Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

                            Comment


                              #29
                              I too am hot in summer and cold in winter. I have a very small window of heat tolerance and if you mix in the sun, it's even worse.

                              I am in my first flare since my diagnosis Jan-2010; and I believe it is mostly heat triggered. Temps in New Hampshire went from the 50s to the 90s overnight. No time for the body to slowly adjust to warmer weather.

                              Comment


                                #30
                                One other issue that I get in the heat is tremors. Last year at one of my son's marching band competitions, the heat was unbearable. Finally, at a certain point, I started with the tremors. Hubby got me something to eat (that usually helps) asked some people in the stands to move so I could sit in the shade - they weren't particularly happy about it but they did it - and made sure I had plenty to drink. I didn't want to leave yet because our band hadn't gone yet. Once our band finished, it was 15 minutes til the awards ceremony, and thankfully the temperature started to fall. As soon as the awards were announced, we went back home and didn't wait for the finals (amazingly, it started to rain about an hour after we left). That was my first episode of having symptoms from the heat. I'm not looking forward to the beginning of marching band season this year, because I'm afraid it will be similar.
                                Diagnosis: May, 2008
                                Avonex, Copaxone, Tysabri starting 8/17/11

                                Comment

                                Working...
                                X