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May 26
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Answer Summary

Members responded to a question about managing spine pain from amyloidosis by sharing their own difficult journeys with back surgeries, nerve... Read more

Members responded to a question about managing spine pain from amyloidosis by sharing their own difficult journeys with back surgeries, nerve damage, muscle loss, and limited mobility. Several members noted that spinal involvement can cause stenosis and nerve pressure, and many shared helpful strategies including pulse wave therapy, massage chairs, and recumbent biking to stay active with less pain. A recurring theme was the long road to diagnosis, sometimes spanning decades, and the relief and empowerment that comes from finally knowing what is causing the pain so it can be properly treated.

A MyAmyloidosisTeam Member

I was having back and pain in my hips. Not sure it’s from my amyloidosis ( four back operations)but I tried pulse wave therapy sessions which have helped. I no longer use a cane while walking, still have some pain but tolerable. Today the weather was finally cooperating so I did a short five mile bike ride on my recumbent trike. Completed without severe back or hip pain.

May 26
A MyAmyloidosisTeam Member

Hello Beverly, I too have had spinal surgery because of back issues. Lumbar and cervical. Back then, there was no talk (or knowledge?) about Amyloidosis, so it was just spinal issues causing pain. Thankfully, now there is a lot of talk, (saw a TV commercial about it) diagnosis and info about Amyloidosis. It took me 15 years to reach this point where I finally got a diagnosis. I'm not thrilled to have that diagnosis, but I am thankful that I can be treated knowing exactly what's wrong . No more guessing. Hang in there, and if possible, have a doctor who knows about Amyloidosis, and can treat your symptoms accordingly. Keep the faith!

May 30 (edited)
A MyAmyloidosisTeam Member

Does anyone think the protein folding could have been prompted by Covid Shots, Boosters, or the Disease?

May 27
A MyAmyloidosisTeam Member

Knowing what a problem is can be the determining factor in dealing with it.

May 31
A MyAmyloidosisTeam Member

Hi Nancy. I agree with you about Amyloidosis affecting the spine. I started having back issues in 1996 but wasn’t diagnosed until 2021. My first cardiologist in 1996 said it was likely that my back issues were caused by Amyloidosis even though they didn’t even know about the disease back then. My experience over these past 5 years is that I get sick and in pain all the time and it is usually related to this disease.

May 30

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