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Newbie with RLS for 25+ years

Posted: Thu Apr 25, 2024 11:27 am
by Dogmama
So glad I found this. I remember my grandmother sitting in her chair, shaking her legs and saying she had a "nervous condition" in her legs. Nobody knew what was wrong and she suffered so much during those episodes.

I am currently on 2mg/2X day of ropinerole and 900 mg gabapentin. I'm augmenting and looking for non-drug help. This board has so much information and I'm so grateful that I found it.

Tried CBT-I for insomnia and it was an epic failure. The sleep restriction and resulting fatigue kicked my RLS into full gear for 4 days.

My lower back looks like bad train tracks with pinched nerves, disk slippage, etc. Probably looking at surgery in the fall. Sometimes neuropathy and restless legs are indistinguishable.

I have sleep meds and Belsomra is the most helpful but the next day hangover (even at miniscule dosages) is hard to manage. I only take it 1-2X week.

That's it for me. Looking forward to learning from my fellow night walkers.

Re: Newbie with RLS for 25+ years

Posted: Thu Apr 25, 2024 12:38 pm
by Polar Bear
You are taking ropinerole 2mg twice daily and this is much too high a dose. You are augmented and will need to wean off the ropinerole altogether and this should be done with the support of your doctor. Non drug help is unlikely to help you do this. If your doctor is understanding and would prescribe a low dose opioid to help you through the weaning period it's a good start. Weaning is a difficult time but must be done. There should be discussion regarding the way forward once weaning is complete.
Please read the Augmentation Forum.

I also have pinched nerves and disc issues which my doctor believes contributes to my rls.
No sleep aid ever helped me. I had a sleep test and was found to have sleep apnea. Using a cpap machine vastly improved my sleep. Of course rls needs to be controlled in order to get over to sleep.
What did help me was steeping my lower legs in a bucket of icy cold water, splashing it up as high as my knees, for about 20 minutes. This often calmed symptoms for long enough to get to sleep.
Others find that hot water will help. Try using a shower head.

I can clearly distinguish between neuropathy and rls symptoms.
My neuropathy is burning and painful skin sensations like my skin was scraped with sandpaper. My rls is deeper and creepy crawly.