ESRD and 24/7 RLS

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
Travis294
Posts: 5
Joined: Sun Apr 03, 2016 1:26 am

ESRD and 24/7 RLS

Postby Travis294 » 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

stjohnh
Posts: 311
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: ESRD and 24/7 RLS

Postby stjohnh » Sun Apr 17, 2016 4:33 am

Methadone lasts much longer than hydrocodone. You probably could get nearly 24 hour coverage with one tablet a day. If not, twice daily should do it.
Blessings,
Holland

Travis294
Posts: 5
Joined: Sun Apr 03, 2016 1:26 am

Re: ESRD and 24/7 RLS

Postby Travis294 » Sun Apr 17, 2016 12:25 pm

Thanks for your reply Holland. I will look into Methadone and discuss with my Drs. There may be a problem with using it since I have increased cranial pressure. I may need a VP shunt before starting treatment and might be best entering hospital while starting it because of the risks and renal failure, but I'm willing to try anything at this point. Thanks again, Travis

sleepdancer2
Posts: 155
Joined: Sun Jun 29, 2014 7:46 am

Re: ESRD and 24/7 RLS

Postby sleepdancer2 » Wed Apr 20, 2016 6:38 am

Travis294 wrote: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 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?


Yes, you do have a lot to deal with. I have a family member with a few of the same issues. I hope you can improve the severity of enough of your symptoms for things to be more tolerable for you. I'm sure any meds will have to be cleared with your kidney doctor. I'll just pick a few of your points to comment on.

- - What is the exact number on your ferritin level? What's considered in the normal range can be inadequate for those with RLS. Is it up near 100?
- - Can I ask what makes your sleep apnea untreatable? It's not very often I read that sleep apnea is untreatable, so I'm curious where the treatment failure lies. I would be concerned about taking opioids with untreated apnea. They may exacerbate obstructive sleep apnea and trigger central sleep apnea. Is this an absolute or maybe something worth revisiting? Poor sleep is thought to increase pain sensitivity. Is it reasonable to think resolving the sleep apnea issue could improve your your sleep enough to make you a bit less sensitive to the discomfort of your RLS, thus allowing better sleep?
- - If most of your RLS symptoms are in your legs, you might ask you doctor if there is any harm in using a TENS Unit on your lower back in hopes of interrupting some of those RLS signals between the legs and the brain. That's the only way i can sleep. It's a long shot, but sounds like you're ready for even long shots.

Sorry I'm not of much help. Some of your health issues are ""beyond my pay grade" and I'm just wishing you well in finding relief.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c


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