CKD

I was told 2 years ago that I had CKD stage 3 bordering on 4, then released by the hospital back into my GP's care, where I was told that I didn't need to watch what I ate or anything, that my restless les was due to arthritis in hips, (I need hip replacement butthey won't do it as I have lung disease as well), I have water retention, get very very tired but can not sleep at night because of legs, have lost over 5 stone without dieting, and carry a back scratcher with me all the time as i am so itchy it drives me crazy. I wish I knew what to do to help myself as my GP and hospital seem to think its ok to just carry on, I am also diabetic have had 2 heart attacks, and have osteo-arthritis, plus a couple of other minor things. I dread going to bed at night.

9 Replies

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  • OMG!!! change doctors!!!! The itchy back could be because of high phosphate levels, so a low phosphate diet (have a look online) Also sounds like you may need a phosphate binder. The hospital are acting disgracefully. Why aren't you under a specialist now that you are at Stage 4?? Someone wrote on here about Tonic water helping restless legs. Search on here for it.

    Good luck, but please see if you can change docs or at least complain. I can't believe how you are being dealt with! Can you go back to him and tell him that you want your phosphate levels looked at?

    Please keep us updated x

  • Hi, I agree 100% with the above coment, change doctors!! And yes my dad used to have while in dyalisis ichiness and was due to high phosphate.

    Here are some advise I found online:

    Apart from the treatment that the doctor can prescribe (ointments, oral antihistamines, anxiolytics), there are some guidelines that can be done to mitigate or at least not increase the itch:

    •. Keep your skin well hydrated, especially gels using very soft and highly moisturizing body cream after bath. . If necessary the creams were applied two or three times daily.

    • Use humidifiers in the room to keep the humidity.

    •. Beware excessive room temperature by the use of heating.

    •. Avoid wearing clothing made ??of wool or synthetic materials.

    • Avoid bathing or showering excessively hot.

    • After the shower, no strong Wipe dry with a towel, then irritates the skin, but giving little touches and gently.

    • cold wet cloths, applied in the area of itching, can significantly relieve.

    •. Cutting nails to not cause infection.

    Best of luck!!!

  • Thank you for your response, I am going to try the Tonic water, will post how I get on, I have thought about changing doctors, but with everything else going on with me, I do not relish having to go thru all tests again that a new doctor would want, I try to avoid them at all costs, every time I go to see a doctor I come out with something else, I have regular checks with diabetic nurse and also respiratory nurse.

    I will look at a low phosphate diet, I have never heard of this, but will look it up.

    Thank you so much for your advice. Its nice to be able to chat about this, as I do not see people much during the day as I can not go out on my own and hubby works some rotten hours, and not very chatty, unlike me...

    xx

  • Sorry to hear about your restless legs&lack of sleep. High levels of Phosphate can cause restless legs its in cola and tomatoes. Have you got a dietician? Ask for a referral this is your NHS. Also have you had your iron levels checked out? low irons levels can cause restless legs but get this checked out..

    Good luck xxx

  • Thank you all so very much for your advice, I have looked online at low phosphate diets and it seems that I alreay avoid a lot of the foods, due to being diabetic and high blood pressure and cholestrol, (both of which are well controled including diabetes), I do used a lot of cream given to me by doc, doesn't help with itching, my back is driving me crazy as i type. recently I had to have iron jabs due to anemia, and it took more jabs than normal to bring leverls back up, I was also given Vit D tab at that time. I have to go back to the docs soon as a follow up to a cyst on my thumb so I am going to have a good chat with her then. Its so hard to get appointments, normal wait is around 3 weeks form date of request for an appointment.

    I have to admit I am getting fed up with the lack of care at my GPs. I have taken all your advice on board and am going to seriously look into the suggestions, think I am going to help myself more than rely on the doctors, I understand they are very busy and I do had to bother them.

    xx

  • I guess it depends where you live, but usually if you suffer with kidney problems with the symtoms you have, you should be seeing a specialist at a hospital or Kidney Clinic, you get to see specially trained nurses too, and dietician. You should not have to suffer so much. GPS have a wide knowledge of many illnesses but specialise in none. ( mostly ) . Is it possible to take someone with you on your next visit, for moral support, demand to see a specialist.

  • I am really surprised that your diabetic nurse hasn't done more, as it is a known fact that diabetis can cause problems with your kidneys. Most of the people that were on the ward I was on the last time I was in, were there because of kidney problems caused by diabetis. So, if you see her, get her to sort out something.

  • Hi everyone, well I have tried the tonic water and it does seems to help, but gives me bad indegestion, sorry about spelling, complete waste of time at the hospital about the cyst on my thumb, seems it has to be there a year before they do anything, oh well 3 months to go before the year is up, seems it is a mucus cyst....

  • Hello silverlady54,

    Have you tried antihistamenes for your itching?

    I have 1 kidney and in stage 3. Have taken the above for years. My GP prescribes

    them and they definately work.

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