My amyloid doctor is the head of cardiology at Washington university in St. Louis at Barnes hospital. His name is Doctor Prahbu. My pain management doctor is Doctor Granberg in St. Louis Mo.
May 27
I am so sorry Steve that you too have such terrible back pain. Did they tell you it was caused by the amyloidosis?
What kind of doctor did you go see?
May 26
I have terrible back pain any time I walk. I’ve had spinal fusion and that helped. I take quarterly steroid injections and also a low dose hrdrocodone three times a day.
May 26
Does anyone with amyloidosis experience terrible back pain? Yes, this is something others can relate to.
Back pain can be connected to amyloidosis in a few ways. Amyloid deposits can affect nerves, tendons, and ligaments, which may contribute to spinal issues like spinal stenosis — a narrowing of spaces in the spine that Show Full Answer
Does anyone with amyloidosis experience terrible back pain? Yes, this is something others can relate to.
Back pain can be connected to amyloidosis in a few ways. Amyloid deposits can affect nerves, tendons, and ligaments, which may contribute to spinal issues like spinal stenosis — a narrowing of spaces in the spine that puts pressure on nerves.
One MyAmyloidosisTeam member shared that they have "bilateral carpal tunnel and spinal stenosis" alongside their amyloidosis diagnosis. Another mentioned experiencing severe, daily muscle pain in their shoulder, showing how widespread musculoskeletal pain can be. Here are some steps worth considering:
- Talk to your doctor about your back pain so they can assess whether it's related to nerve involvement or structural changes
- Ask for a referral to a physical therapist or occupational therapist, who can help manage pain and preserve mobility
- Stay hydrated and active where possible, as gentle movement can support nerve health and circulation
- Discuss pain management options with your care team, as treatment adjustments may help
Back pain can really wear you down, so don't hesitate to bring it up at your next appointment — it's absolutely worth addressing.
May 26
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