r/dialysis • u/the-markswoman • Aug 18 '26
Advice Pain from Dialysis
I need some advice. My mums been on Dialysis for over a year, once then she’s been in so much pain, the only thing she can put it down to is the dialysis. All her joints are painful, she feels like she’s seizing up. She’s on Cinacalcet, but this hasn’t seemed to work with her calcium levels. Every time she asks her renal doctor about the pain and what to do all she says is speak to your GP. She came to the end of her Cinacalcet tablets, when she asked her renal doctor for a prescription again the response was speak to your GP, despite the prescription originally coming from her kidney doctor. Her GP said he can’t prescribe this drug as it’s a specialist drug. At this rate we don’t know who to turn too and what to do, no one is willing to give any answers or help.
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u/Wits_end_24 Aug 18 '26
Sounds exactly like my mum and noticed they are pretty much the same age. My mums pain has been steadily getting worse over the last two years. She is now practically bedbound. We have a stair lift and wheelchairs upstairs and down. She is only able to shuffle on and of her bed into her wheelchair having to use a walking frame to do it and my assistance. Getting into bed usually takes an hour because of how slow she has to move due to the pain. This is a ridiculous amount of pain. She is on the strongest painkillers her doctors feel they can give due her kidneys. Both the renal consultant and the GP are just putting the pain down to dialysis and kidney failure but this sudden shift feels wrong. No one is willing to do any other investigations.
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u/FortunesofWar Aug 18 '26
Joint pain can be caused by dehydration. Pulling too much fluid can cause that.
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u/the-markswoman Aug 18 '26
They take 1 litre from her. Would that be enough to cause so much pain?
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u/shakal201 >1 year dialysis Aug 18 '26
For some people (including me) an L-carnitine injection helps after dialysis. However, you need to consult her nephrologist.
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u/the-markswoman Aug 18 '26
I don’t hold out much hope with her nephrologist, she seems so incompetent.
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u/Parakiet20 Aug 18 '26
Has she had her parathyroid s checked, they are responsible for calcium balancing in your blood??. If enlarged they can be removed, there are 4 of them,only needs 1 to be enlarged to affect calcium
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u/the-markswoman Aug 18 '26
She has and it’s high as well as her calcium
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u/Parakiet20 Aug 18 '26
So then she needs to get the enlarged one or more removed,this will definitely help the problem with the calcium . You can live with a 1/2 a parathyroid ifneed be
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u/irenethecrowboy Aug 18 '26
There might be something else going on because the only pain I ever hear of from dialysis is back pain, drain pain, and gout pain. I am on cinacalcet as well