[brendaParticipant]

My husband has AL Amyloidosis and is on lenalidomide. He had a fall 1 month ago and although no bones broke he is still in unbearable pain so bad he’s using a wheelchair to get around. There is no sign of improvement despite painkillers and gels, ice and rest. Could the pain be amyloid related rather than just the fall? I am getting really worried that his leg is getting so weak that it will not recover.

[ellenModerator]

Dear Brenda

I’m sorry that no one has yet replied to your post; it may be that no one has had the experiences that you describe. I hope you don’t mind me replying with some suggestions.

AL amyloidosis doesn’t generally cause the kind of pain you describe. I wonder if your husband is also on dexamethasone with his lenalidomide? Dexamethasone can cause muscle wasting and patients often describe aches and pains, especially in the legs. This can also cause some people to lose confidence in their walking and mobility can be affected.

It’s important that your husband describe his symptoms clearly to his doctor and to keep stressing that this is a big problem for him, especially his reduced mobility.

If he can manage to do some regular gentle exercises this may help with his muscle tone and balance, perhaps a referral to a physiotherapist may help.

I hope this helps, but if you have any questions or would like to talk things through then please do call me or one of my colleagues on the freephone Infoline on 0800 980 3332 or email askthenurse@myeloma.org.uk

With best wishes

Ellen  

[brendaParticipant]

Thank you so much for the reply. My husband stopped Dexamethosone a month ago so maybe he’s still suffering some weakness from that. We will persevere with what we are doing now and mention it at next visit to Haematology clinic.

Thanks again. Your reply helped.

[Author]

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