OMG, I have been trying to explain this to ever doctor I have spoken to. The worst is getting an answer like, "you should not be having this type of pain with AL Amyloidosis". I have spinal stenosis and had back surgery just a year ago with 1 level fusion. I have totally been blaming all of this on "sciatica". I think I have purchased every device from SmoothSpine Co. (wonderful co.) in order to control pain.
3 days ago
I have recently attended the NAC London and everything is in remission atm. I have 2 other autoimmune diseases. Is it still necessary to see the docto?
September 8
That sounds really exhausting and uncomfortable — nonstop pain like that deserves serious attention. What's being described sounds like it could be related to amyloid-related spinal stenosis, which happens when amyloid proteins build up in the spine and narrow the spaces around nerves, causing them to become pinched or Show Full Answer
That sounds really exhausting and uncomfortable — nonstop pain like that deserves serious attention. What's being described sounds like it could be related to amyloid-related spinal stenosis, which happens when amyloid proteins build up in the spine and narrow the spaces around nerves, causing them to become pinched or irritated.
This is actually a recognized complication of amyloidosis, and the symptoms can include:
- Burning or stabbing pain in the back, hip, and leg
- Pain that radiates down the leg (sometimes called sciatica-like pain)
- Numbness or tingling in the leg or foot
- Worsening pain when standing or walking
- Leg heaviness or cramping
Most amyloid-related spinal stenosis tends to occur in the lower back (lumbar) area, which lines up with what's being described. The burning and stabbing sensations can also be a sign of amyloid neuropathy, where amyloid proteins deposit near nerves and disrupt how they function. Nerve pain from amyloidosis is often described as sharp, burning, or throbbing — and it's frequently worse at night.
It's really important to contact a doctor as soon as possible about this. Nonstop pain at this level is a signal that something needs to be assessed and potentially treated or adjusted. Keeping a note of when the pain is worst and what makes it better or worse can be really helpful information to bring to that appointment.
September 8
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