Restless Legs Syndrome (RLS) Discussion Board

My GP recommended I look into Botox injections for the current state of affairs. That being my major pain is my outer thigh muscles (Rectus Femorus). One will get banjo tight about 8 or 9 pm & get worse when I lay down. If I get that under control the other leg goes off. And RLS on top of that.

I searched the site and did not find any current discussion. Old posts say expensive short term relief. GP gave me a 2005 Journal of Clinical Sleep Medicine that followed 3 cases with some short term success.

The following is 2019 better study but same findings.

https://www.neurologylive.com/view/botu ... g-syndrome

This one is double blind small study with the same findings but nothing about cost. Injections into part of thigh u sit on (biceps femoris muscle)

https://pubmed.ncbi.nlm.nih.gov/30274305/

My GP gave me a contact and said she might do it (cash). I get the impression it is very expensive.

I'm not convinced.

I don't know anyone who has said they did.

I would hold off until the researchers can demonstrate a longer-term benefit. This study used one injection and - in short - it was effective in most patients at 6 weeks post-injection but the benefits had disappeared by 8 weeks. Also, there were only 21 patients who completed the study, which is a pretty small sample.

It would have to be very very cheap to get an injection of it every 6 weeks to maintain efficacy, and who knows if that's even safe.

Those two links lead to two descriptions of the same study.

(Sorry for the late response)

Botox has become an extra source of income for many generalist neurologists whose largest source of income is treating migraine headaches. An individual who suffers from frequent, almost continual, migraines will do anything to get relief, no matter the cost. If you haven't experienced one or more true migraines, you simply cannot comprehend how desperate these people can be. My RLS is classed as very severe and I used to experience three or four severe migraines each month, which wasn't considered frequent enough to warrant botox. Botox helps these severe migraineurs, but there is a slight risk that if the doctor hits the wrong spot, you could suffer partial facial paralysis. So there is a malpractice risk for neurologists who do these injections and therefore the cost. But as a patient, when you are in that much pain, you are willing to accept the risk.

I was once discussing the medical pain chart with my GP and he asked how I would rate a migraine. I told him that I would call it at 8.5 out of 10. He nodded and said that sounded about right because for a doctor, a level 10 is someone who is thrashing and screaming due to the pain just before they pass out because their brain cannot cope. I told him, with a bit of gallows humor, that with a migraine, you just want to die but that you know that you won't because that would make the seemingly unending pain stop. Thankfully, gabapentin has very effectively stopped 99+% of my migraines.