Restless leg /limb syndrome

Posted by freidbs @freidbs, 2 days ago

Hello I've had rls for about 10 years, currently being treated with clonazepam 2x2mg per day. This is after all first line treatment failed. Does anyone else have this condition (not twitching legs more like I'm plugged into a wall socket) I would like to change to diazepam as I think the clonazapam is having side effects such as actual muscle stiffness and does not calm me down or relax muscles anymore. It does keep the distressing symptoms of rls at bay. Has anyone been diagnosed with this and have experience with changing from a very strong clonazepam to a weaker but I think more relaxing alternative benzo for this? Or absolutely cannot be any other family of medicine as the side effects are just awful (dopamine agonists were the worst) thanks in advance

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dbamos1945 | @dbamos1945 | 2 days ago

@freidbs: yea, most of what you share is “me”! I am taking Lexapro 10mg for cancer side-effects, but also have had restless leg syndrome for most of my life (last bd “80”)! I have another strange side effect from Lexapro and never told anyone… I have hallucinations in the morning when I first awake. My eyes see what isn’t there. It alarmed me at first, but now I realize what is happening and just wait until it fades away! However, if you tell anyone I will deny everything!
… Anonymous

John, Volunteer Mentor | @johnbishop | 2 days ago

Hello @freidbs, You might want to scan through the list of the other discussions on Connect for Restless Leg Syndrome to learn what others have shared on different questions - https://connect.mayoclinic.org/search/discussions/?search=restless%20leg%20syndrome

rjjb | @rjjb | 1 day ago

The only thing that gives me some relief from
Restless Legs Syndrome is pramipexole 0,5 mg (prescription).

missjb | @missjb | 1 day ago

Hi freidbs (@freidbs)

I take buprenorphine which works well. Not perfectly, but mostly really well. In addition, I use these bands on my legs (right below my knees) called Nidra made for RLS by the Noctrix company in California. The bands can be activated with a button and distract from my RLS symptoms (which are mostly pain--my RLS has never caused much twitching). The Nidra is a prescription device--Medicare pays for mine--and it has both decreased the frequency and severity of symptoms over the last 4 months since I started using it. It's not currently available in all states. Google the company for their phone number and call and ask if you live in a state where they have service. Anyway, after 15 years of RLS and a living hell in 2020 (to 2024), it is the icing on the cake of best care, that works. For the last 14 nights, I had NO symptoms during 8 of the nights. This is after years of symptoms waking me from 2-4 times EVERY night. I think the Nidra works on the principle of TOMAC (you need to search this in the medical literature---I can't explain it). Also, there are medical guidelines published in 2024 on how RLS can best be treated. You can google these. Finally, you need a physician who understands RLS and will know how to treat it. Not all neurologists are up on what works best. It is good you appreciate the reason to avoid dopamine agonists! Good luck and keep us posted.