ESRD and 24/7 RLS
Posted: Sun Apr 17, 2016 2:55 am
Hello, I'm new to this forum. I have RLS secondary to end stage renal disease. I'm on dialysis. I've tried ropinirole, mirapex, gabapentin, alprazolam, clonazepam, and none of them worked. The ropinirole worked when I had RLS years before kidney failure. Now Hydrocodone let's me sleep. Without it I go 4-5 nights with no sleep at all. None. I'll pace the house all night.
But now I have RLS during the day, during dialysis and at night until the opioids kick in.
I've been to several doctors and my vitamin B,D and iron ferritin levels are fine.
I'm in a life or death situation. RLS all the time AND dealing with dialysis is too much.
I drink caffeine and chew tobacco, which I must stop doing. I also have sleep apnea which has been untreatable. I don't have jerky leg though. I also don't have problems getting to or staying asleep if the RLS subsides.
I've tried MM and it is best for immediate relief but not enough to lay still long enough to sleep. Hot baths also help but not always and only temporarily.
I also have Intracranial Hypertension(increased brain and spine pressure). The next solution for that is to have a hole drilled in my head and a shunt placed.
I know my case is unique and I have a lot of issues, but is there anyone with similarities or anyone with non-professional comments that may be helpful?
I'm quite desperate. My symptoms are getting worse every day. What should I focus on trying first?
Thanks for reading
But now I have RLS during the day, during dialysis and at night until the opioids kick in.
I've been to several doctors and my vitamin B,D and iron ferritin levels are fine.
I'm in a life or death situation. RLS all the time AND dealing with dialysis is too much.
I drink caffeine and chew tobacco, which I must stop doing. I also have sleep apnea which has been untreatable. I don't have jerky leg though. I also don't have problems getting to or staying asleep if the RLS subsides.
I've tried MM and it is best for immediate relief but not enough to lay still long enough to sleep. Hot baths also help but not always and only temporarily.
I also have Intracranial Hypertension(increased brain and spine pressure). The next solution for that is to have a hole drilled in my head and a shunt placed.
I know my case is unique and I have a lot of issues, but is there anyone with similarities or anyone with non-professional comments that may be helpful?
I'm quite desperate. My symptoms are getting worse every day. What should I focus on trying first?
Thanks for reading