Viewing 17 reply threads
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    • #18681
      Jodi Enders
      Keymaster

      Does temperature or weather trigger your Myasthenia gravis symptoms?

    • #18687
      ANITA A. TARLTON
      Participant

      It absolutely does.  A low pressure system (think: thunderstorms, hurricanes) makes me feel like my arms and legs are as heavy as telephone poles. I can barely open my eyes.

      Heat is another trigger.  I have a cooling vest that helps.

    • #18688
      Amy Cessina
      Participant

      I have strange symptoms when weather fronts approach that I never attributed to being from having MG. They all center around my face and mouth which is where I have the most trouble with my MG. And I get nerve pain around my head. I actually don’t mind the heat because I have hashimoto too and I always feel cold. But out  in the very cold weather my tongue feels like it’s 20 pounds!

    • #18692
      CathyF
      Participant

      I agree with Anita.  Low pressure systems causes fatigue and daytime naps for 2-3 hours.

      Caution required for deep cold or raw air as well as searing heat.  Extremes in temperatures can be a problem.

    • #18698
      Karen
      Participant

      Definitely HEAT takes me out—above 80 degrees results in emended fatigue—84 F in the sun and its too much—I overheat (for some reason I do not sweat much at all—my skin gets very hot) and I need to get cool quickly and am out for the rest of the day.

      I use a cooling vest (Polar products?) so I can go out at all in the spring/summer (I live in VA).

      I missed all of my kids graduations and many sports event b/c I can’t tolerate the heat

    • #18699
      Karen
      Participant

      I didn’t consider low pressure as I don’t live in a high altitude; however, I cannot fly b/c they don’t pressurize the planes well enough. I found out the hard way on a short flight (Orlando to Richmond VA). I was hard to arouse when we were near Richmond (my husband just though I fell asleep)— I was having problems breathing. Fortunately I had my Trilogy as a carry-on-he got it, I put it on, and by the time it was time for us to “de-plane” (last b/c of my wheelchair) I was feeling much bettter and could take the trilogy off.

    • #18717
      Shane Tarr
      Participant

      Good question.

      Reading reply threads above it seems that climate triggers MG symptoms, For most of the year I live in temperatures where the daytime average is 35C and overnight average low 21-24C, Humidity varies from a low of 45% during the hottest month when daytime temperatures regularly exceed 40C although overnight is can be as low as 18C, During the coldest months – well actually weeks rather than days – the overnight temperature can drop to 6C and daytime temperature struggle to reach 26C. However, I do not notice any real changes because U divide up my workday between 4 to 5 hours of paid “intellectual labor” and 4 to 5 hours of quite strenuous physical labor. We grow a range of high-value tree crops, raise fish, and cultivate (“legally”) marijuana for remedial purposes. I find being able to achieve a workable balance between different forms of labor interspersed with some leisure-based activities such as swimming and drinking an icy cold beer or a decent wine enables me to manage my symptoms. Thus, for me, climatic factors per se do not appear to be a real trigger,

       

       

    • #18719
      EDWARD CLAGHORN
      Participant

      Agee with all – low pressure systems are the worst. Often I feel a heavy feeling in my head – as if I have a sinus problem. I feel the extreme cold the most but have to pay more attention to hydration on my bike rides. I cannot ride anymore on very hot – 90F days. Now every day is an adventure – feeling good or bad is never a trend, it is a daily check in.

    • #18720
      Kelley
      Participant

      100% it does. Heat and humidity ncrease my MG symptoms significantly.

      Heat is my worst enemy and I wear an ice vest if I’m outside longer than a few minutes. And it’s not just outdoor heat. I can’t be in a warm room either and often wear my ice vest indoors at doctor appointments or picking up prescriptions. We keep the house at 58-60 in the winter and run the air conditioner all summer.

       

    • #18723
      Robert B.
      Participant

      Yes, heat brings on severe fatigue. Add humidity and it’s worse.

    • #18725
      Pamela
      Participant

      Absolutely! Both extremes make me weaker. I get easily dehydrated in the summer and my muscles cramp a lot. I have to drink electrolytes day and night.

    • #18730
      John Palatucci
      Participant

      Definitely . Heat and over exertion is what brought M.G. on in my life when living in Alabama. Diagnosed in 2015 when my right eye closed and muscles went haywire.

    • #18732
      Mike
      Participant

      Has anyone come across any scientific suggestions about what physiological mechanisms might be causing MG exacerbation from heat?  Our inevitable future of worsening heat waves looks to be a growing problem for us MGers.

      Mike

      • #18980
        Julie
        Participant

        I have dysautonomia, a dysfunction of the autonomic nervous system, and temperature control and sweating are part of the autonomic system.  After I was diagnosed with Myasthenia I started looking at the research to see if there was a connection. Older research says absolutely not but newer research is discovering a correlation and definitely sees a link. Other symptoms are blood pressure dropping, especially when going from sitting to standing, heart rate increases or decreases, gastrointestinal problems, such as gastroparesis, sweating too much or not at all, fatigue, short of breath.  So this could be why we have heat intolerances….

    • #18734
      Maureen Gosz
      Participant

      Omg! Definitely low pressure systems. We are in a rut right now with rain, rain, rain! I feel like I got hit by a dump truck!
      The heat & humidity are also major factors in how I feel.
      Kelley, you are correct with indoor temps also. It gets extremely warm where I work,& it sure takes a toll. I wear a cooling scarf, but will have to check out the vest.

    • #18736
      Cynthia
      Participant

      Sure does. I cant believe how the heat gets to me. I just want to sleep all day.

    • #18982
      Amy
      Participant

      Absolutely, I just started pool therapy, one on one with a therapist. The pool was too warm for me. When I got out of the pool, my legs felt like jello and I was completely exhausted after only 40 minutes. I am pretty sure it was a combination of the exercise and the heat since the same thing happens if I take a hot shower while just sitting on a shower bench. No more hot showers. I am hoping they can adjust the temperature in the pool since it is a single person pool and is about 95 degrees which is 20 degrees warmer than my community pool.

    • #19066
      Sharon Haw
      Participant

      Definitely heat – even cooking in a hot kitchen – and I have to wear my hair off the back of my neck and use cold water to cool my face and neck, or I get profuse sweating and even a sudden nose bleed. Also, more noticeable fluctuations in feeling changes in temperature even at night. I can be cold one minute and blazing hot the next. My temperature reading doesn’t change but I get really red flushing in my face when I get hot, exercise or even have a glass of wine (sigh – I miss having an occasional glass of wine). I also started getting purple hands (Raynaud’s disease) when my hands get cold. I live in a higher altitude in a cold climate and I have to have an air conditioner running and cooling scarf on my feet and legs in order to sleep in summer. I haven’t noticed cold affecting me at all.  I avoid trips to hot places during their hottest seasons. I will pay more attention to low pressure systems and my MG symptoms – I never considered there could be a correlation and we have a lot of pressure changes here. Thanks so much to everyone for sharing all of this great info – the more we understand about how environment and other conditions impact our MG symptoms, the easier it is to manage them and live our best lives!

    • #19101
      Barbara E.
      Participant

      Even before MG, I preferred warmer season (beaches vs ski trips). But, at a point when my MG symptoms affected my breathing, I noticed that it was easier to breath cold air. My doctor said that it was typical for MG patients. Still, my hands and feet weren’t happy standing out in the cold snowy air.

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