PKD Charity for Autosomal Dominant PKD

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 ??

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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

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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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Hi,

I went through a load of pain due to a cyst on my right kidney being 6cm across and pushing against nerves causing pain down my leg and back areas. I was given codeine and I hated them only took them twice. Then one day my little son jumped on my bust the problematic cyst and Jesus it was painful but then healed and I'm sort of pain free now. I did go through about 3 years of pain before hand. I managed it with paracetamol and plenty rest unfortunatey I couldn't do much more.

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Pain is a constant issue with pkd. I am on fentanyl patches which deliver pain medication 24 hours a day. In addition I have paracetemol and hydromorphone for when pain gets too bad BUT that is not enough. Id request further help from a pain management specialist via your gp.

There may be another issue like I have. The gene defective to cause pkd sometimes is also causing a defect in your spine called spina bifida occulta which is a mild form of spina bifida and if you have this sometimes the spine kinks to give you scoliosis which I also have. Both add more pain and problems. If you have a dimple or a small patch of hair at the base of the spine I would see your gp.

Good luck

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