Whatever the Weather, I Am Equipped

Retha De Wet avatar

by Retha De Wet |

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Europe weather

Scientific literature clearly establishes that weather, particularly temperature, can influence the severity of myasthenia gravis symptoms. Cold weather is infamous for being worse for pain and hot weather results in reduced muscle strength.

Living in Africa, hot weather is no scarcity. This means that I dread the coming of each summer or spring. The first hot day of the year usually results in me looking like a rag doll, with each limb floppier than the next. I can feel my body slowly losing its battle against gravity and succumbing to the generalized muscle weakness that is typical of MG. Each breath feels heavier than the last, and each step wonkier than the one before.

During this time of year, I rely heavily on anything that can cool me down: cold drinks, ice packs, fans, ice cream, or air conditioning. Placing ice packs over my droopy eyes can lead to less double vision and overall relief from the heat. Ice packs on my neck or a fan in my face also help with cooling down my entire body. On certain days when I cannot escape the heat, I must accept that I will remain in bed with the air conditioning set to its coldest, doing my best to gather strength for the next day.

The cold season brings with it increased muscle strength and a little more pain than usual. In Africa, winter does not bring snow, but it does get cold. In December, I visited Europe and experienced a real snowy spectacle. Not only was I a tourist, meaning excessive amounts of walking and moving in general, but also I was wearing heavier and thicker clothes than I am used to. This would normally result in a string of MG symptoms worsening and less energy in general. However, the opposite proved true: I was, in fact, stronger and had adequate amounts of energy. It was a pleasant surprise and led to a dramatic improvement in my attitude and feelings about the cold season in general.

I walked a record number of steps while on my trip and still managed a glass of wine to end a day of adventuring — naturally followed by a very deep and long sleep to recover for the next day. But I felt well-rested and capable the next day, and almost every day after that, too.

I adore the cold winter wonderland that Europe offered me. I will always cherish it. I feel that the increase in pain is a small price to pay for the ability to breathe and walk comfortably again. I can even feel an improvement when I experience life in South African winters; the decrease in temperature now reminds me of a lighter load to carry, both figuratively and literally.

It’s empowering that I have finally come to this realization because it means I can anticipate when bad times may come, or I can know when to challenge myself a little bit more than usual.

Whatever the weather, I will never stop fighting. Life is beautiful.

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Comments

Marty Knight avatar

Marty Knight

Wow! Come to Canada in the winter. It's - 43C with the wind chill today. The cold tightens my muscles and whips my breath away. I'm exhausted trying to breathe the frozen air is just a few minutes. I'm not sure the temperatures you felt in Europe but please don't think the cold is good for MG.

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Retha De Wet avatar

Retha De Wet

Cold does not cure MG, but it is better than heat. Sorry to hear you are struggling, keep fighting.
https://jamanetwork.com/journals/jamaneurology/article-abstract/579075

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Brett Reynolds avatar

Brett Reynolds

I have been dealing with the effects of MG from double vision, muscle fatigue and exhaustion for the past 10yrs. It wasn't until just now a neurologist connected all the dots. Using mestinon which almost negates the double vision and a few other less than convenient symptoms. Cool is better than hot but Cold makes me cramp pretty bad. So I'd rather deal with feeling limp than a knot.
I guess I will learn more as this progresses but at least I know what it is now.
Good luck to all.

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TERRY CARROLL avatar

TERRY CARROLL

My daughter was recently diagnosed with MG and I have MS lol. We are thinking of moving south to get away from Michigan winters. What are your thoughts?

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BSR avatar

BSR

I have been dealing with ocular for 14yrs but wasn't diagnosed until 3yrs ago and full blown for the past 4yrs. The summer i have more trouble with my eyes but less with my limbs especially my lower legs and feet. I take breaks when i need to, and naps. I am 48 and retired so i can manage to some degree. Winter my legs twitch and cramp more but my eye work to some degree better. They have me on mestinon 4x a day which is great because i was really struggling and prior to them putting me on it i was sleeping 12-16hrs a day which makes it really hard to do anything. Now i sleep if you include the naps 8-11hrs which is much better for living a normal life.
I will say summer and fall are the best for me overall. I live in Northeast Ohio, USA.

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Judd English avatar

Judd English

Any tips for MuSK MG management? Just got a positive MuSK lab test, have been struggling with dysphagia, fatigue, and eye lid twitching for 10+ months. No formal diagnosis as of yet so I may be jumping the gun but I can’t find any info where someone has a positive MuSK lab and doesn’t have MuSK MG.

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Justine avatar

Justine

Some studies say MG is not inherited, but others say they do find a correlation. My father was diagnosed with MG, and I’ve been having a lot of heat intolerance, generalized weakness, and sort of floaters or double vision. I can’t stand the heat I feel like I’m going to die in it. The doctors brush me off as “crazy” because they can’t figure it out. Won’t refer me to any specialist they just sent me to a psychiatrist instead. Is it possible its MG? I do have muscle weakness in the right side of my face with a droopy eye… since I was about 12.

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