Stage 4 PKD

I am 42 years old been diagnosed with PKD for almost 3 years now. Kidney function is 20%. I went to Dr today but saw his PA. Less just say when I left she had me crying. She asked was I tired? YES all the time. She asked was I nauseous or vomiting? YES most of time. She asked did I have back pain? I said YES and it has this pulsating feeling to it. She then told me I must be depressed cause ppl with 20% kidney function don't feel as bad as I do?? She never her of back pain like that. I really felt like I was crazy by end. Am I only person that feels this bad?? Is this in my head?? I feel like I'm losing my mind. I am not depressed at all. I've also gained about 50lbs that I can't get off?? Any advice would be greatly appreciated.

8 Replies

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  • Hi blessed75 sorry your having a bad time, it not in your head, this disease can be very difficult to deal with, and it's not just the disease but all the other problems that come along with it, all the things your are experiencing are normal for the condition.

    You have not been diagnosed very long I've been diagnosed for 20 years, I'm 47 with GFR43 CKD stage 3B, so you are more advanced so I cannot give advice on how symptoms progress with only 20%, but if you are on Facebook join the "PKD charity Uk" there is an amazing network of people who have PKD, who can help from their own experience or their family experience, unfortunately I don't know my family who have this condition.

    There are going to be things you will need to know that the doctors don't tell you, there is a lot of information on the internet.

    I hope you can connect with the PKD charity as I have found many people on this site

    All the very best

    Jan x

  • Thank you Jan x for your advice. I will look into pkd charity u mentioned and thanks for helping me not feel so crazy!! Thanks again

    Robin

  • Hello

    No its not in your head....

    I am egfr 4% and have just started dialysis....but when I was 20% I had a lot of medical people saying I shouldn't be having symptoms at that stage because most people don't ....my answer was always......We'll that's great for them but I do so how can you help me to address them....only then did I get the Help and support I needed.....

    You don't need to suffer, there are ways of helping to alleviate many symptoms.....quite often it was my GP who helped the most.....also forums like this where you can share symptoms which others have experienced and have found ways to overcome them.....

    If your kidneys are big with PKD then that could be contributing to your backache....mine do but it's easier now that I've lost some weight.....I also felt nauseous and was given tablets for it from my GP......also looking at my diet with a dietitian helped.....one nurse also told me to drink more water as if I was feeling sick it showed I was dehydrated...I drank more and it did help....tiredness was also a problem for me which is harder to address.....I just slept a lot more, exercised as much as I could and lost some weight......all these helped me but we are all individuals and different things work for different people.......

    I hope you find some ideas on this forum to help you...

    Best wishes, Margaret

  • Thank you Margaret for your kind and reassuring words.

    Thanks again

    Robin

  • Hi I am also stage 4 egfr 25. I feel sick and tired every minute of every day at the minute so you are definitely not alone there. My back pain is now pretty constant which I am only allowed to take codeine and paracetamol for which give me headaches. I feel like I'm in a never ending circle some days. But you are expected to just get on with it I suppose. I have gained weight which my neph thinks is due to my kidneys getting larger. I have just had an Ct scan to see how big they are and how much room I would have for a new kidney when the time comes. I eat little and often now as I get very full quickly due to my enlarged kidneys.... Oh the joys of this disease... Hope you feel better soon. I'm trying hard to get thru each day as not many people seem to understand including family 👪

  • Yes one day at a time but it is very reassuring when u know others feels as you do. Thanks for letting me know and I wish you best.

    Thanks

    Robin

  • Hello there, I too had all the symptoms you have when I had around 20% kidney fun tion. Ignore this person. What's a PA doing giving out medical advice anyway. Or have I misunderstood what pa stands for?

  • Thanks for reply. I feel much better after hearing you and others confirm my feelings. I will not be seeing the PA again only my Physician. Thanks again

    Robin

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