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Which cost me a toe recently. Lung amyloidosis. Recently diagnosed with underactive thyroid, which I must start taking medicine for everyday. I would give anything to get some energy. I go to bed tired and wake up tired. Does anyone else feel like this??

September 10, 2025
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A MyAmyloidosisTeam Member

Hi Shirley. I too suffer, and I mean suffer with chronic fatigue. I have scoliosis so it is almost impossible to walk upright. And, don't let me mention the other symptoms of amyloidosis. My primary doctor told me I could write a book about amyloidosis since I have almost every symptom in the book. I avoid depression like the plague. But, by God's grace I can keep my mind off it most of the time. So, my friend, when they come up with something for this fatigue, I'm first in line. I'm going to ask my doc for more physical therapy to see if I can improve my mobility. I fear my weight will continue to increase if I don't get more active.

October 2, 2025
A MyAmyloidosisTeam Member

Pain in feet has gotten better been in the gym daily and it's paying off big difference

September 10, 2025
MyAmyloidosisTeam

Yes, fatigue is a very common experience with amyloidosis, especially when it affects multiple organs. The fatigue you're experiencing can be particularly intense because your heart may be having trouble getting enough oxygen to your tissues. This, combined with neuropathy symptoms, can create a cycle of exhaustion that Show Full Answer

Yes, fatigue is a very common experience with amyloidosis, especially when it affects multiple organs. The fatigue you're experiencing can be particularly intense because your heart may be having trouble getting enough oxygen to your tissues. This, combined with neuropathy symptoms, can create a cycle of exhaustion that feels overwhelming.

Here are some energy-conserving strategies that may help:
• Sit instead of stand for daily tasks when possible
• Take short 10-30 minute naps during the day
• Stay hydrated and maintain regular meals
• Plan your most important tasks for when you typically have the most energy
• Don't push yourself beyond your limits - take breaks as needed It's important to discuss your fatigue with your healthcare team, as they can help identify if any of your medications may be contributing to your tiredness. They can potentially adjust dosages or suggest alternative treatments that might help improve your energy levels. Regular follow-up appointments are essential for managing your symptoms and maintaining the best possible quality of life.

Many MyAmyloidosisTeam members share similar experiences with fatigue and pain. You're definitely not alone in this struggle.

September 10, 2025

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Saint Louis, MO