I’m new to this site

[DebCity]

I’m a newbie with Stage 4 CKD. 40 yrs ago I sustained kidney damage due to having HSP Henoch Schleinen Perpra as a 16 yr old. I’m now on a transplant list. I’ve always suffered with insomnia, but lately it’s been worse due to what I call, restless BODY syndrome. I find I can get comfortable for about 5 mins then HAVE to move-from side to side, front to back, every part of my body needs to move. It’s not so much pain as it is complete discomfort. Anyone else have this problem? Is this a form of RLS?

[Hidden]

If you're on dialysis then you the chances are that you have RLS due to that.

I have read that a potassium supplement can help, but you need to check this.

Obviously you need to ask your doctor/dialysis team. Don't take any potassium without consulting them.

[DebCity in reply to Hidden]

I am not on Dialysis and hoping to find a donor before that has to happen. I have Hyperkalemia so I can’t take potassium.

Thx!

[Hidden in reply to DebCity]

OK, no problem. I hope all goes well for you.

[Hidden]

I think it's likely you have RLS, yes. I was a Dr and I recall patients on dialysis did get RLS. Manerva is right and I'm sure you'll know not to take any eg potassium supplements, could be very dangerous in kidney disease without specialist advice

I do recall one patient being prescribed a tiny dose of Pregabalin in this situation. Our local renal physician knew about RLS and knew what to prescribe, much lower than standard dose as damaged kidneys can only handle much less and you get a buildup so it's the equivalent of a higher dose.It would definitely be the renal drs and not a GP who would discuss. I would mention your problem to them. My patient hadn't discussed till she described to me what she was feeling and I recognised it as have RLS myself

[DebCity in reply to Hidden]

I will definitely talk to my nephrologist I have an apt next month. I’ve tried Tylenol pm, Ambien and Tramadol. Nothing helps me sleep.

[Hidden in reply to DebCity]

You don’t need to be on dialysis to get RLS in kidney disease, just damaged kidneys is enough .sorry I just assumed you weee on dialysis. You’ll still need very low doses if prescribed eg Pregabalin though.

Hope you get your transplant soon

[Joolsg]

My close friend had a badly diseased kidney and severe RLS. I don’t think she took anything for it & she wasn’t on dialysis. She was lucky enough to get a transplant from her husband who was a match and she’s never had RLS since.

I really hope you get your transplant soon & I am positive your RLS will disappear.