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Yesterday I couldn’t standup without severe dizziness but today I could change my sheets but it took over 15 minutes. Another trip to the doctor with no answer.

September 21, 2025
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A MyAmyloidosisTeam Member

Well I do chair yoga and it has helped me with balance. I can’t do regular yoga anymore because I have postural hypotension. I do a lot of walking so that helps too. Remember you’re in remission so the abnormal cells aren’t proliferating anymore but the existing amyloid is still there. It’s been 3 years. I’m way better than I was in the beginning but still not 100%

September 23, 2025 (edited)
A MyAmyloidosisTeam Member

Your physical endurance is low and the only way to improve it that I have found is to slowly increase activity. I'm still waiting for a diagnosis but I deal with fibromyalgia and I have some of the same issues with it as with al. Try gentle yoga but not those new exercises that they're saying in the chair those are not yoga it's yoga is a slow meditative and it does increase endurance take care of go slow

September 22, 2025
A MyAmyloidosisTeam Member

Well that pretty well tells you the story .Number one you stop the amyloid and well that is the biggest issue . Then like my kidneys it is food and exercise and yes slowly does it and with some professional assistance. in the physio and exercise department. ..Those blood tests show any deficiency also and so the team that monitors is key. Onward and upward ... A good team of understanding friends is also a plus .😇

September 21, 2025
MyAmyloidosisTeam

It's understandable to feel frustrated when recovery doesn't match expectations. Even in remission, symptoms like dizziness upon standing and fatigue can persist because while treatments may control the disease, some underlying effects may remain. Recovery timelines vary significantly between individuals.

The symptoms you Show Full Answer

It's understandable to feel frustrated when recovery doesn't match expectations. Even in remission, symptoms like dizziness upon standing and fatigue can persist because while treatments may control the disease, some underlying effects may remain. Recovery timelines vary significantly between individuals.

The symptoms you describe, particularly dizziness when standing and difficulty with daily activities, are common with amyloidosis. This is often related to how the condition affects your heart and blood vessels. While in remission, regular follow-up visits are still important as your healthcare team can monitor your progress and adjust support strategies. Physical therapy might be helpful to gradually build strength and improve your ability to perform daily activities.

Remember that some days will be better than others - like how you were able to change your sheets today despite yesterday's difficulties. Focus on celebrating small victories while giving yourself grace on harder days.

September 21, 2025
A MyAmyloidosisTeam Member

I’ve been in hematological remission for almost two years. My heart is not functionally any better, and I’m immunocompromised— so, I’m sick fairly often. This is a little disappointing, of course, but it’s superior to the alternative.

October 21, 2025

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