Living with ADPKD

Hi I was diagnosed with Poly cystic Kidney disease many years ago and am stable within stage 3 renal failure.

I am a nurse in a children's hospice I work part time. My main problem has been pain due to the size of my kidneys and liver .

I have recently been referred to a pain specialist and am at present trialing lignocaine patches, they are helping but the next step is a nerve block. Is there anyone out there who has had this procedure and can let me know their views on it.

20 Replies

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  • hiya there, i havent heard of this to be honest, but would like as much support and information on PKD as possible. my hubby has been diagnosed with PKD as have a lot of his family,and is ongoing with various pain relief at the minute, Like yourself he wants to carry on working full time, but hes specialist has said he next pain relief would be morphine?. He knows this would affect his job, so is braving the pain with hes current meds. I havent heard of lignocaine patches. he takes Amitriptiline for during the night as well as Tramadol and Paracetamol during the day.

  • Hi there thanks for your reply, I hope i can help. Has your husband been referred to a pain specialist? My renal consultant had me on all the painkillers you have mentioned but none of them really helped. My pain is all in my side on the right, around ladies bra level.

    My apin is being caused by the enlarged organs pressing on nerves, painkillers like tramadol and paracetamol don't really work on this type of pain. It may be worth your husband asking for a trial of lignocaine patches mine are 5% and do make a difference.

    Please do not hesitate to contact me again if I can do anything to help I will

    Best regards Christine

  • hi ya i have been diagnosed with pkd for the past 2 years i have been on paracetamol n other painkillers but they have not worked so i have been on the morphine patches the dose is up to 10 mgs a hour since november n it has made a big difficults. i have been off work aswhile for year n half now i was in a lot of pain so my boss had to let me go n cause im on the patches n the high does no one will give me a job.

    well done for braving the pain as i did not

  • So sorry you have had to give up work due to the pain, I do find it difficult sometimes but the lignocaine patches have been a god send. Stay strong xx

  • Many Thanks Christine I will get him to speak to the GP about this pain specialist and let you know how I get on, Hes only 38, he doesnt deserve this amount of pain xx x

  • My husband is also 38 with PKD, he has enlarged kidneys and is also on all of the above meds but has just started the morphine. He has also just had to give up work. I havent heard of these patches either, but I know that the morphine works by blocking the nerves sending pain signals to the brain. The tremadol and amitriptiline dont work on the pain at all, but the morphine has some nasty side effects and can make him quite sick. We are seeing his consultant on Tuesday, so will ask about the patches too, something has to help.

    Hayley xxx

  • Hi MISSHJ

    Renal consultants are very good in dealing with kidneys but i have found they are often our of their depth when dealing with pain ask your GP to refer your husband to a pain control specialist that is how i got the patches. My pain is specific to one area though. It will not work for generalised pain. Is your husband also on meds for nausea and vomiting he should be as he is on morphine. Gabapentin is another drug that has some use in pain but it does have a lot of side effects. I have immense sympathy for your situation and will do anything i can to help if i can keep in touch. But i strongly recommend referral to a specialist pain control person.

    Best Regards Christine.

  • He isnt on any meds for vomiting yet, he has only recently started the morphine. I will get him to speak to gp about seeing a pain specialist. It isnt general pain, its all in his sides and back, where his kidneys are enlarged. Its just awful to think that this will be the best quality of life for the next 20 years. Thanks for all your help Christine

    Hayley xxx

  • The NKF have some information called 12 Steps to Pain Control which might help. click the link or ring the NKF Helpline for a copy of the leaflet on 0845 601 02 09

    kidney.org.uk/Medical-Info/...

  • YES!!! Now my nephrologist says I shouldn't be in the pain I'm in & it's NOT my kidneys. How the hell does he know!!!! (I have ADPKD, 43% eGFR). I do also have a degenerative disc mind! I'm on Gabapentin, paracetemol and tramadol for pain killers & they still don't work fully. I was always told next was morphine! Interesting!!!!

    But you're quite right, the GP keeps saying he'll refer me to the pain clinic but won't (cost?) The nephrologist sends me elsewhere! What do I need to do! Meantime, they say "there's no reason why I shouldn't work" making me feel like I'm making up the pain! I wish I were!! Also on antidepressents. So partial comment but also if anyone has ideas........

  • Hello there

    I would insist that your GP refers you to pain control team. My pain is being caused by organs pressing on nerves, it's a deep ache really debilitating when it comes and can be there for hours days or just minutes. Since I saw the pain specialist and got Lignocaine patches it has been so much easier to deal with. He has also mentioned botox injections into the painful area to relieve the pain. Gabapentin could be an option also but there are side effects. I have been sent all over the place too just leads to more frustration.

  • Oh, I have! I go back for another sick note thu so will press again. But as they have now agreed to an mri to what in my spine is pressing on a nerve, that or any cysts / enlargement will show up as clear as day. So that's a start!

  • Thats a move forward then I will keep my fingers xed that they come up with some answers for you

    Best wishes Christine

  • Hi, just to let you know I spoke to my GP this morning, had a very frank discussion that I was fed up of people "in their professional opinion" of telling me what I should & shouldn't be feeling & hence what I could or couldn't do. Very quiet thereafter & more than happy to do what I needed! Think the message got through! Maybe more of us need to take it up a notch and make our presence felt!

  • Hi

    Great news, It seems to be the only way to get things done. Just got back from outpatients too. eGFR down to 32 just hanging on to stage 3. Got to start on sodium bicarbonate 3 times a day. Also developed gout so another medication for that too. Feeling a bit defeated at the min but i will soon pick up. We have to stay strong.

    All the best

    Christine

  • Indeed! Really glad to have stumbled upon this site and wonderful people like yourself. It's so easy to feel isolated with a condition that seems to be really "not understood". Just getting fed up of doing battle all the time, feeling exhausted, in pain, being told I shouldn't feel the way I do. Very noticeable that the only real friends are ones that themselves have medical issues or care for someone that does. Shame others don't see it!

    I had a really serious gout attack a few months back, the third in a year, and I got told it shouldn't be that bad. I have NEVER known pain like it! Would rather someone tried to cut my head off with a blunt knife!! The consultant upped my amlodipine but it's still there, he doesn't understand why! Well, it is!! I wish I had something to say to help with the gout (except don't knock it!! But you'll have no doubt discovered that!) I was 43 when last tested. We all have our ups and downs, yes, we need to stick together!

    Kyle

  • Hi Kyle

    I posted about the gout and got this reply it may help you too.

    NICE guidelines on Gout recommend allopurinol first line treatment, this may be all you need but if that doesn't work then Febuxstat would be a great option. Some people experience flare up whenever they start a treatment, this is the case with both Allopurinol and Febuxstat but stick with it and ease the flare by using the colchicine. These flares ups are transient so make sure you stay on the meds. Good luck, I had tried everything including cherry extract, changing my diet etc but it was febuxstat that finnallly worked for me!

    PS you are right about the non steroidals, stay away from them and ease the pain with standard paracetemol or codine.

    any useful info i will send it on as you stay it is good to have people who understand what we are going through.

    Christine

  • OK, thanks! I shall make a note of that. I'm sure I'e not seen the last of my gout!

  • Just wondered how you were getting on not been on for some time due to health issues.

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