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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anyone Have Postural Hypotension?

A MyAmyloidosisTeam Member asked a question 💭
Nassau county, NY

I know I need to exercise but I can’t go out by myself. There’s always the potential to pass out. What exercises can you do by yourself at home? It’s very frustrating. I feel so much better when I’m out and moving around. There’s only so many times you can clean your house! 🙄

July 18, 2023
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A MyAmyloidosisTeam Member

I take midodrine 10 mg 3x a day. That’s down from 20 mg 3x a day! It’s very slow going trying to wean myself down. The cardiologist says our goal is to get me off of it completely. I hope so. I hate taking all these pills. I wish I had that bp Chris! It seems to be my low bp coincides with the chronic diarrhea. Yesterday was a bad day and my bp was 54/49 🙄

July 19, 2023 (edited)
A MyAmyloidosisTeam Member

I wonder if you might be able to do some gentle yoga. There are many poses that are done seated or lying down. And it would have the added benefit of quieting your mind which Lord knows I need! Try to see if you can find a book or video.

July 19, 2023
A MyAmyloidosisTeam Member

If you google "seated exercises" ex. https://www.livestrong.com/article/13767450-bes...
This is not a recommendation per se, just an example, it is possible to exercise cautiously. Personally I would discuss this with your doctor who could provide more insight

July 18, 2023
A MyAmyloidosisTeam Member

I need to restart my exercise routine

July 22
A MyAmyloidosisTeam Member

Finally after 2 years I’m doing a lot of walking almost every day. I feel so much better when I walk. I had chemo yesterday and did almost 6k steps today!

July 17

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