Uncomfortable heavy painful legs with WG and Stage 4/5 Kidney Failure.

I have WG and Chronic Kidney Failure and this last week I have been taking Paracetamol for painful heavy legs. I just don't know what to do with them, they are not my usual ' restless legs' which I take medication for. They are not swollen or red. Has anyone else experienced this and what helped please. Thanks.

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  • Dear Essex-jill,

    I don't know about your exact condition but I AM a renal patient, with vasculitis. I had a kidney transplant, last July, after four years on dialysis- due to kidney damage, caused by vasculitis. My question is simple; how are your kidneys functioning? Kidney failure, as you probably know already, can cause fluid build-up- maybe swollen 'restless' legs? Worth checking, perhaps? Am I barking up the wrong tree?- please tell me that I am, I won't mind honestly! In any event it sounds like 'something' is, a little, 'off' here so please do speak to you doctor/consultant.

    Will you let me, us all, know how you get on please?

    In the mean time take care, best wishes

    AndrewT

  • Hi Jill, you really should get a kidney check to see if function has dropped off further. Usually it causes swelling of the legs, so maybe that's not the case. As a simple remedy to help with the symptomatic problem, try getting a spare pillow & put it under the bedclothes at the bottom of the bed so that the lower part of your legs are slightly raised. I have a pillow like that all the time and it's magic. I get up in the morning & marvel at my slender ankles that bear no resemblance to the ankles I went to bed with the night before! But even if that works, do get a reading for the kidney function as each % lost is precious.

    BW - John

  • is it fluid on your legs, when i first had wg and acute renal failure i had great difficulty walking, i didnt know at the time that it was due to all the fluid i was carrying., my legs were so heavy that i coudnt lift them without help. at the time i didnt know i was suffering with renal failure and thought i was just getting fat. the doctors kept telling me that there was nothing wrong with me. are you doing dialysis if not maybe you need water tablets or dialysis

  • Hi everyone, thank you for your replies to my question.

    My kidney function is now 25% compared to only 12% last year! when my sister was being tested as a living donor for me. So things have greatly improved. My legs are not swollen and it feels different from restless legs. It kind of feels like the circulation is not getting through !!! So when I go to Addenbrookes this week I will try to explain that to the team. I have tried elevating them but that does not help with the pain. I will repost what Dr Jayne says when I see him, I'Am also seeing a Metabolic Bone disorder Consultant this week too. Hopefully one of them will come up with an answer.

    Jill.

  • Just back from Addenbrookes. Unfortunately Dr Jayne was away. I saw another doctor who is unsure about the pains in my lower legs !! She has recommended I continue Clonazepam and to try a low dose of Amitrytilline at night. I can ask my Gp to increase the drugs if they have no effect. She also said we could do nerve conduction tests if the pain does not settle. Had usual kidney function blood tests and will ring and check the results next week. Hoping they give me some relief soon.

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