PKD Charity for Autosomal Dominant PKD
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Tired of This Pain

I have PKD, 3 cyst altogether. I am getting so tired of this constant, burning pain in back & both the left & right side. I can't take it anymore!! Please somebody, anybody help me please. Hurting-N-Houston.

7 Replies

Has your doctor given you something for the pain? It sounds to me like you need to see your doctor again for more / different pain management.

You shouldn't be in really bad pain like that.

Hope you get it sorted and feel more comfortable soon.


Yes I agree. I had two huge kidneys (now removed) which were covered in cysts and I had no pain except once when one of the cysts got caught between my ribs but that only lasted a few days.


Hi there

I also have had major issues with pain, I have many cysts and some very large ones. These cause pain by compressing the nerves and I get pain mostly around the right side. It is a deep searing pain that is worse with standing and can last minutes to hours. I have recently been seen in pain clinic and I was prescribed Lyrica (Pregabalin) this has made a big difference to the pain it is now manageable. I do use paracetamol and codeine as a back up for any breakthrough pain. There is a down side to taking these tablets as they have made me forgetful and not as sharp and one the ball as I usually am. But it is worth it to have the pain more manageable.

Hope this helps

Best wishes Christine


Hi. I have huge kidneys totaly riddled with cysts i was transplanted this year and still have constant pain i have used hydromorphone for the past several years to take the edge off. Ask your gp or consultant to be refered to the pain clinic .good luck and dont let it get you down


I have ADPKD and suffer sporadic kidney pain, I guess I am lucky given how both my kidneys are peppered with cysts. For me it has been trial and error with pain relief and is something my specialist was happy to leave to my GP. Most likely they will start with Codine, maybe Co-Codamol or Dihydrocodeine (With Paracetamol). If your pain is constant i.e. you need long term pain relief then I suggest you ask your doctor for Tramadol long release 100mg, does the trick for me.



I've been looking for someone with similar issues to mine.And you are the closest I've seen.I have had sporadic pain in my right side for many years.Sometimes the pain goes to the back of that same side.

But a week after pkd diagnosis I started feeling pain on my left side also.

I know it's not in my head but I just started noticing the pain on the left after the diagnosis.I do not use any meds for the pain.Cause I just feel a slight discomfort and then it's gone then it's back again.Would you know what's causing the pain when it comes? I mean I know it's the cysts but why isn't the pain constant.What makes it come and go?


ramolawithu; you said your nephrologist put you Toplavan 9 months ago, how are your results, any cyst shrinkage, I'm on on my way down that road, any advice would help. Thank You.


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