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A MyAmyloidosisTeam Member asked a question 💭
Greenwich, CT
June 13, 2025
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Answer Summary

Members overwhelmingly confirmed that fatigue worsens significantly in hot weather, with many describing it as a major challenge that forces... Read more

Members overwhelmingly confirmed that fatigue worsens significantly in hot weather, with many describing it as a major challenge that forces them to limit outdoor activities, schedule walks after dark, or simply slow down. Several members shared additional struggles that compound heat-related fatigue, including swollen feet, shortness of breath, cardiac and lung involvement, narrowed arteries, and chronic pain from conditions like atherosclerosis and past surgeries. A recurring theme was the emotional toll of pushing through exhaustion and pain daily while trying to stay positive, with many finding strength through faith, hope for medications like Vyndamax or Amvuttra, and the shared understanding of others facing similar battles.

A MyAmyloidosisTeam Member

So sorry you are having so much pain. If you have Wylde Type Amyloidosis, i hope you can get your hands on Vyndamax or Amvuttra with doctors consent. ATTR seems to find all parts of your body to attack. Hope some of these medicines help you. Living alone isn't much fun while you suffer. I too have had major back surgery along with everything else but I am trying to be optimistic and keep my doing as much as I can to keep my life normal. Feel better!!!!

June 14, 2025
A MyAmyloidosisTeam Member

Thanks, I want to think in a positive manner. It's just getting very difficult. God help me.

June 14, 2025
A MyAmyloidosisTeam Member

Absolutely

July 3, 2025
A MyAmyloidosisTeam Member

🥵🥵🥵🥵🥵

June 24, 2025
A MyAmyloidosisTeam Member

Me too.....I want to be positive but sometimes it's hard !!

June 18, 2025

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