• Summer Heat & MG

    Posted by BioNews Staff on June 25, 2021 at 8:25 pm

    The farther we get into the summer, the higher the temperatures rise. The heat has always made me feel more sluggish and on the weaker side. I try to stay indoors as much as possible, but sometimes going outside is unavoidable.

    How do you deal with the summer heat? What tips do you have for people with MG?

    Frank replied 1 week, 3 days ago 20 Members · 23 Replies
  • 23 Replies
  • Rick Federmann

    Member
    August 4, 2021 at 11:10 am

    Heat and humidity are my primary triggers.  When I was diagnosed, I lived in Austin, Texas. Austin has two seasons: warm and hot.  The humidity is so high that stepping outside can be like entering a sauna. A trip to Walmart was often enough to ruin the rest of the day.  I was effectively housebound, and still needed frequent rest.

    I moved to Colorado Springs and the cooler, drier climate has made a dramatic difference.  I still experience symptoms, but they are significantly reduced.  For example, yesterday I spent 9 hours working on landscaping in my back yard.  Yes, I was later punished by MG for my misbehavior, but it is astounding that I could do that work.

    I’ve discovered that humidity is a more significant factor than heat. I function better at 85 degrees + 10% humidity than I do at 60 degrees + 50% humidity.  If you are considering moving to a healthier climate, I suggest determining what actually affects you, so that research of prospective locations will be more effective.

    Also, I’ve learned that drinking a glass of ice water has an immediate restorative effect when heat/humidity are affecting me.  If I’m away from home and I suddenly feel weak, getting a cold bottle of water or drinking from a fountain with refrigerated water eliminates most of the weakness long enough to finish what I’m doing. A sip doesn’t do it; I drink enough so that the volume of water acts like an internal coolant.

     

  • Thomas Lee Clark

    Member
    August 4, 2021 at 11:40 pm

    What a magnificent find for me. This site helps me understand I was not totally mental. Heat and humidity sapped me and still makes me weak after a shower to the point I take a cool shower always and rest afterwards. The sun does the same. Actually, thinking about exercise wears me out. I am thankful for how well I feel now.

  • Dave Hall

    Member
    August 6, 2021 at 8:59 pm

    I was diagnosed with MG shortly after I retired, six years ago. My retirement plan was to increase my agricultural business on my farm. My farm is outside of Houston, Texas so I have plenty of heat and lots of humidity. One Saturday morning while I was at the Bryan, Texas farmers market selling my duck eggs, I finally had a bad reaction to the heat. I just got into a shaded area and waited it out. That week I got a small, battery powered fan and an ice chest. I made my own custom cooler so I could have a cool breeze whenever I wanted it, or needed it. Now I am very careful of how much heat I let myself get exposed to.

  • Ann Marie Hetrick

    Member
    August 8, 2021 at 6:18 pm

    Summer heat and humidity saps the strength out of me too. I have to stay inside in the air conditioning . When I try to do anything in house I have to have the air turned down low and I still have to stop and rest. People think I am crazy when I say I prefer winter over summer because I can function so much better.

  • Lise

    Member
    May 29, 2023 at 1:38 pm

    What about swimming in your pool
    ? We have a heated pool
    But indont know what to to do! We just opened it and the heat of the outside air is already killing me!

  • David S

    Member
    May 30, 2023 at 1:03 pm

    The heat is hard on me too.

    Here in Houston the temp is moving into the 90’s.  So I will mostly stay in a/c and do any yardwork early in the mornings.  Shopping during the heat of the day, between 11am and 6pm is tough.  My handicapped placard is a big help.

    Our Son has a nice pool but soon it will be too hot for me.

    Scott

  • James Starkey

    Member
    June 1, 2023 at 8:19 am

    Does anyone have experience using a cooling vest? Did it make a significant difference?

    Heat is a problem for almost all of us, I think. And heat is relative. Before I contracted MG, I had acclimated somewhat to Texas climate and was able to stand temperatures of 80-85 degrees without a problem. Now mid- to upper 70’s is problematic after 15-20 minutes exposure. Thus the interest in a cooling vest! Looking forward to hearing your experiences!

  • Ann Marie Hetrick

    Member
    June 3, 2023 at 1:00 pm

    Hi James. I bought a cooling vest last summer and it did help tremendously. We have AC and still wear the vest in the house when I am cleaning as even with the air down low I get hot easily and the vest helps. I also bought a cooling fan this year that goes around your neck and I love it too!! Hope this helps.

    • TheresaG

      Member
      June 21, 2023 at 8:20 pm

      Ann Marie, I’ve visited the site for a vest numerous times. Curious which kind you use. They seem like they would be cumbersome? Please share?

      thanks much

      • Buckeye

        Member
        September 9, 2023 at 6:25 am

        Got mine at the “Cooling Store”. Makes a world of difference. Difference in being able to sit at grandson’s ballgame or not, being out at all, or not, able to ride my mower, or not. Got the one with the “Phase Change Material”, of which they have a couple styles. Don’t regret it. Lasts 1-2 hours depending on temp. Nice thing is don’t have to freeze this material, can refresh the gel packs in a cooler of ice water or fridge in 20 minutes. Yes, heavy and bulky at first but got used to it and now don’t know it is on. Not cheap…at $150-175 and I got 2 so could use one and recharge one. That is small price for freedom it brings. They also offer same version of phase change in small neck wrap (“Black Ice Wrap”). Got that and that is an “immediate relief tool” and not that costly. I can’t recommend both products highly enough. Not a silver bullet but sure extends my limited range of what can do. Google “My Cooling Store”. Their website could be better, but they have always been responsive when I have called with a question. And you will find stuff goes in and out of stock. Good luck.

  • James Starkey

    Member
    June 16, 2023 at 3:41 pm

    Thank you, Anne Marie! Your comments were very helpful. I was unaware of the personal cooling fan, but I think I’ll look into that, too. Perhaps it would keep my head a little cooler, too.

  • Delia Hernandez

    Member
    June 19, 2023 at 11:35 am

    Whenever I can, I take a dip in a pool or wherever I can find some water. This helps me during the summer with the heat. It reduces the intensity of my pain and it’s also refreshing. Honestly, I don’t think too much about the seasons because they’re just a normal part of life.

  • Phyllis

    Member
    June 22, 2023 at 3:09 pm

    I am heat intolerant & live in Las Vegas. I have to schedule my day around early morning hours, as much as possible, use a cooling towel, and stay indoors when the warmer weather hits.

    I have Raynaud’s, as well, so I have to do what I can to protect myself from extreme cold or hot temperatures.

  • Stephen D. Turner

    Member
    June 25, 2023 at 11:14 pm

    I live in Southwest Louisiana and the summers here are hot and humid. I am forced to stay inside in the air conditioning most of the time. When I must go outside for a short period of time I wear a bandana around my neck that has been dipped in cold water. For longer periods of time I wear a cooling vest (ice packs placed inside a mesh interior).  In order to work in my shop for 30 minutes to an hour, I use fans that blow directly on me and also an evaporating water cooler (slang term for this is a “swamp cooler). When I come back inside, I immediately place an ice pack on my throat to ease the congestion that has built up.

     

    • Tina

      Member
      June 29, 2023 at 12:08 pm

      Phyllis I have Raynaud’s too so extremes of seasons are rough on me, making my inside times a lot more frequent. I stay in LA a lot and find I can do more outside activities than when back in the Southeast where I live. Water, more energy snacks and pacing myself help me get through the day

  • Cheekster

    Member
    July 12, 2023 at 9:45 am

    The heat is controversial to me when there’s humidity. I enjoy the heat and am capable of tolerating high temps (up to a point just like anyone else). I moved to a city where there’s tons of people from tourists to locals. It doesn’t wear me out and at the end of the day I am home feeling not tired. However, I have a neuromuscular disorder with my muscles. If I wanted to do push ups, they are difficult. If I want to do pull ups, I can’t. Some areas are more “weaker” than others but if i have a neuromuscular condition, then I need to take meds or supplements to rev up the communication. I didn’t know about this disease until now and i do have problems with one side of my face and the droopy thing and facial expressions and other symptoms. Do I feel I have MG? I feel that because of the weakness in some areas of my body (muscle wise), I do feel there is some communication error going on and honestly, it’s scaring me. I do not want to add more medications that might give me a weird day with trembling and hyper thoughts, but I think I will ask my doc for a low dose and take choline supplements and drink redbull. I mean my flareups aren’t excessively noticeable like they were 10 years ago but I think they are still there. My ego may not be letting me realize i still have MG. I am pretty strong willed and busy during the weeks. I just had surgery for something and am recovering at home, but it is taking a toll to just stay inside all the time. My body hurts more when I’m coooped up inside like this too long. I still can’t do pushups and pullups and my ankles are swollen every time i get up, and hurts to walk on my feet when I wake up. The pullup and pushup thing was happening from when I was younger but thought I was just some weak person that couldn’t do those things. I think it’s because of my MG. I thought there was something weird about it because they’re easy pull ups or push ups, especially the push ups. But for me, I can’t even do a half of one of them. I always thought it was really weird i couldn’t but I think I know now. It makes sense. once I start my meds, after a few weeks, I will try to do them again and see if I can. I bet once I start my meds and supplements, I will be able to do the pushups and pull ups for the first time in my life. (Pull ups being harder for anyone probably but I can’t even hold on to try) ….I guess i may have this autoimmune disorder. It’s awful that it’s an autoimmune disorder. I’m really worried and stressed out from the realization of this and have been sickly feeling for the last few days. I am capable of having a panic attack from the thought of me having an autoimmune disorder. The thought of going on the meds required worry me a little because I don’t like weird side effects and will have another panic attack or other. I will probably have to take them as I’m going out to have fun or going into work, that way I’m not just home alone and waiting for side effects. Anytime I start any meds or do something new, I make sure I’m around people or busy places, because I get really scared and the comfort of knowing somebody is there is enough to make the side effects go away or not seem so bad. There is so much going on with me lately. I still want to get married, have kids, buy a house, live here, travel, do things, etc and it’s like these things are placing an excruciating delay on all those things and i feel like there’s already been a giant delay in my life on happiness. I guess one by one I take care of things. I drank a redbull this morning and I feel not hyper but good. if i drink too much, I will be very hyper but even when I drink too much of redbull, it’s not a jittery scary type of hyperness. I think there’s something going on with taurine and its neuromuscular benefits. Anything that would help. I’m looking forward to starting to low dose mestinon to see what good it does me. But if it gives me weird side effects, I’m stopping it asap and just relying on supplements and other. I’ve always wondered why I like these stimulating type supplements or foods or drinks. I’ve never liked anything that depresses me, probably because my MG already has me exhausted. Maybe I was seeking out stuff that woke me up or stimulated me because the MG was tiring me out or something? I love starbucks lattes but not too much. Just enough to where I’m awake a little. I like songs and genres or music that are exciting and active lol. Something that “gets me going”. I’ve always wondered why I’m like that but maybe it’s cuz my immune disorder is trying to wear me out and I’m fighting it. I have trouble relaxing at other times, maybe cuz I don’t know how to or am scared of something. I like to exercise and it helps. I need to figure out what I need to do about this cuz I’m not the type of person to let MG get me down.

    • Buckeye

      Member
      September 9, 2023 at 6:42 am

      With your symptoms I would go to a good neurologist (preferably with MG expertise) and ask for an evaluation which will probably include an ACHR antibody test, and then maybe single fiber emg. The only thing worse than having an autoimmune disease is having one and not knowing or treating it. If untreated it will only get worse. Early treatment can make a world of difference and there are options. So get a professional diagnosis. Yes it is scary…but denial is scarier. And who knows. It may be something else. And I would not be afraid of Mestinon. Yes all meds have side effects you can learn to live with. But Red Bull is a chemical too, and probable less tested, and just as dangerous, as many of the safe meds. There are lots of non med lifestyle things that can help with MG too, and a good doc can help you with those. Best of luck friend.

  • Bambilin

    Member
    June 5, 2024 at 3:04 pm

    I’m going to have to make plans for the loss of electricity. A tornado passed close to us and we had no power for two days. It was in the 80s during the day. I bought a small battery operated fan which helped. BUT my lift chair didn’t work and my adjustable bed didn’t work. I no longer can lay horizontally to sleep or my back hurts. So I was very warm and physically uncomfortable. Plus I had to sleep sitting up, sort of. We live in a rural area. So I guess I’ll have to go to to a motel somewhere with power — but they won’t have adjustable chairs and beds. Or travel to several hundred miles to my daughter’s who does. That won’t work in an ice storm, though.

  • Buckeye

    Member
    June 5, 2024 at 5:46 pm

    I have same problem. Ended up buying a whole house standby generator. Expensive but great piece of mind. Especially in winter. We live in rural area and get snowed in. If electric went out in sub freezing weather I wouldn’t be strong enough to get to someplace safe. We were fortunate to have natural gas but there are propane models available. Hope I can recoup much of investment when sell house.

  • Lou DeYenno

    Member
    June 7, 2024 at 3:12 pm

    I must be the odd snowflake!

    Cold exacerbates my MG to the point I can’t handle anything colder than 72 degrees. I need heat to operate to my normal. Cold causes my hands to cramp as well as legs and feet!

    I do not tolerate air conditioning well nor like temperatures below 76. I do need good airflow though!

  • Amy Cessina

    Member
    June 19, 2024 at 3:54 pm

    Same here I hate the cold but love the warm. Not overheated warm but will sit outside in 95 degree days no problem. but I have hashimoto too makes me cold. Hot does not make me weak but I have what’s considered a mild case. (For now 6 years in)

  • Trish

    Member
    June 26, 2024 at 3:12 pm

    I am seronegative with primarily eye/bulbar symptoms and severe fatigue. I live in the California Sierra foothills where our summer temperatures can reach 114 degrees. It is brutal. During the cooler months I have no or only mild symptoms and can do most anything all day. In the summer months once the heat arrives, I have a hoarse voice or no voice, eyes are bad, difficult to swallow, severe fatigue, etc. I have tried the cooling vest and other strategies without much relief. We have a pool and I go in to cool off my core but still can’t muster enough energy to do much. We are currently discussing moving to Washington State, either for the summer months or a total relocation. We have been vacationing there every summer for the last three years, and as my husband says, I am a different person up there. Almost no symptoms! I had not focused on a reaction to cold though. We only get down to a low of 28 here . So my question is – do you react to only one of the extremes (i.e. hot or cold) but not both? Does anyone react to both and are there differences in your severity between the two?

  • Frank

    Member
    July 3, 2024 at 5:09 pm

    In the going on three years that I’ve had myasthenia I have found that my triggers don’t impact me often until the next day. For example, if I overwork outside or I do too much physical activity, I do get a bit tired but the next day I’m pretty well exhausted and it takes me two or three days, at least to recover. So sometimes it’s hard to know what my trigger was when I start to feel exhausted an I’ve been “good” that day.

    Each summer since I’ve been diagnosed, has been very hard on me, but, I’m embarrassed to say, that this discussion has made me realize that the reason I’ve been having problems in the summer is that heat and humidity is a trigger for me. I knew cold was a trigger, but it had never clicked for me that heat and humidity was also. Now that I’m limiting my time outdoor in the high humidity and heat, I’m starting to feel better.

    In fact, now, I can tell when I’m outside too long because I start getting a little bit tired. A while ago, I realized that I was getting short of breath just standing and watering some plants. I came inside into the cooler air and my shortness of breath went away. I think the humidity is harder on me than the heat; but the heat is hard also.

    Thank you for this forum, it has helped me and having learned about the impact of heat and humidity on my disease, I know this summer will hopefully be the best summer that I’ve had since my diagnosis.

    Thank you and bless you all,

    Frank

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