Pain and pain management

I am 44 and was diagnosed at 30 , my dad has it and has had two transplants with the successful

One holding when I was 19 ..

my pain In my back is difficult and made worse by a back issu as week , I get fatigued. But mainly because the only pain killers I can take are parecemol ,I’m allergic to

Most others .. my GP put me on amytriptyline .. but I couldn’t work on those 😱 .

I stay fit and try to look after my self , does anyone else suffer with pain and manage it ??

2 Replies

You say you were put on amytriptyline, I have taken that and felt exhausted all the time. I was put on nortriptyline, I understand it is more expensive but there is no tiredness with it and I tolerate it much better


Yes, sadly many of us have pain with our PKD. If your GP and your nephrologist are not helping enough, you can ask to be referred to a specialist pain centre. They do vary in quality, if you find a poor one, then change. A good one should have ideas beyond just more of the conventional pills, and should suggest other solutions including TENS machines and possibly some alternative medicine things, and should work with you to manage the pain.

I have left out that other great help -- heat. An electric heating pad, a hot bath ....


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