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I experience such awful pain in my feet. I have had 1 toe amputated. Due to gangrene. I am not a diabetic and vascular doctor tested for

A MyAmyloidosisTeam Member asked a question 💭

Blood flow , not a problem. But my pain is excruciating. Nothing helps. Anyone else have this? What helps?

December 17, 2025
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A MyAmyloidosisTeam Member

Hello Shirley, I’m just at the pain level with my legs. (I’m being treated in Portland Oregon.) That my Doctor is giving me Pregabalin 300mg twice a day. This works very good for me. My leg pain has been going on over two years. Lately my feet feel like ice and I have a hard time getting them warm. I had been running hot all the time, my whole body but this changed 3 months ago. But my blood test numbers have been great. 😊

December 18, 2025
A MyAmyloidosisTeam Member

I’m so sorry! I feel your pain. I get no sleep due to excruciating bone pain in my left leg. I’m currently on Norco and Methadone for pain from my pain management Dr at MD Anderson. I pray you get relief soon!!!

December 18, 2025
A MyAmyloidosisTeam Member

I'm sorry you're dealing with +the pain. I understand, not sure what every pain is caused by, usually thinking the worst. I don't remember what it was like to get a good night's sleep. I'm afraid the lack of sleep will be what does me in. I hope you start to see some improvement,

December 18, 2025
MyAmyloidosisTeam

What helps with excruciating foot pain related to amyloidosis?

Foot pain in amyloidosis is often nerve pain caused by amyloid protein deposits affecting your peripheral nerves. This is called amyloid neuropathy, and it can cause burning, sharp, stabbing, or aching pain that's often worse at night.

A MyAmyloidosisTeam Show Full Answer

What helps with excruciating foot pain related to amyloidosis?

Foot pain in amyloidosis is often nerve pain caused by amyloid protein deposits affecting your peripheral nerves. This is called amyloid neuropathy, and it can cause burning, sharp, stabbing, or aching pain that's often worse at night.

A MyAmyloidosisTeam member shared experiencing "nerve pain in my feet," so you're not alone in dealing with this challenging symptom.

Since you've ruled out vascular issues and diabetes, it's important to talk with your doctor about your amyloidosis specifically affecting your nerves. They can:

- Prescribe medications to help manage nerve pain
- Adjust your amyloidosis treatment to slow protein deposits
- Refer you to a pain specialist if needed
- Evaluate if your small fiber nerves are being affected (these lack protective covering and are often impacted early)

The pain happens because amyloid proteins deposit on or near your nerves, disrupting how they function. Small fiber nerve involvement typically causes the burning and intense pain you're describing.

Please reach out to your healthcare team as soon as possible about the severity of your pain. Early intervention with appropriate pain management and amyloidosis treatment adjustments may help provide relief.

December 17, 2025

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