Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Extreme pain in all joints neck , lower back , feet and hands this all went away when on treatment . My McMillan nurse has just said go back to Gp as they feel it’s nothing to do with the amyloid but I’ve read a report on here that it can be , any thoughts would be grateful

August 20
 · 
Reactions
MyAmyloidosisTeam

It's completely understandable to feel frustrated when your symptoms aren't being connected to your AL amyloidosis — but your instincts are worth taking seriously. Joint and bone pain *can* be linked to AL amyloidosis, and the fact that your pain went away during treatment is a really significant clue worth raising with Show Full Answer

It's completely understandable to feel frustrated when your symptoms aren't being connected to your AL amyloidosis — but your instincts are worth taking seriously. Joint and bone pain *can* be linked to AL amyloidosis, and the fact that your pain went away during treatment is a really significant clue worth raising with your doctor.

Here's what is known about AL amyloidosis and joint/bone pain:

- Amyloid proteins can build up in the connective tissues that cushion and lubricate joints, causing stiffness, swelling, and pain
- Amyloid deposits can also affect cartilage, tendons, and bones themselves
- Pain in the neck, lower back, hands, and feet are all recognised areas of involvement
- Bone degeneration can be a result of amyloid protein buildup weakening bone structure A MyAmyloidosisTeam member shared that their most surprising symptoms included "head pressure and numbness in hands and feet," while another described severe, daily muscle pain in their shoulder — so you are definitely not alone in experiencing this.

The key point to bring to your GP is that your pain resolved during treatment. That pattern strongly suggests a connection to the AL amyloidosis rather than something unrelated. It would be worth asking for a referral to a specialist who has experience with amyloidosis, as they may be better placed to assess this link than a general practitioner.

August 20
A MyAmyloidosisTeam Member

Thank you for the reply , I think it’s more likely to be amyloid deposits in the tissue/ joints from my understanding of reading the article on here .

August 20
A MyAmyloidosisTeam Member

Zou het ook niet een vorm van Multiple Myeloom kunnen zijn. Ongeveer 10-15% van mensen met amyloidose AL ontwikkelt ook Multiple Myeloom en vice versa.

August 20

Related Questions

View All
A MyAmyloidosisTeam Member asked a question 💭
East Central IL

A MyAmyloidosisTeam Member asked a question 💭
Barnegat N.J