Restless leg /limb syndrome

@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

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/

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

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.

Yes! I have one of the uncommon forms of RLS that attacks my chest instead. Causes my heart to go unstable and, untreated, ends up in Congestive Heart Failure. In fact, most cases of RLS end up developing symptoms elsewhere, since RLS is caused by faulty signals from the brain to any part of the body. In can localize anywhere. That is why most people with it have a much higher rate of heart attacks. They don't know this.
I was diagnosed with it after CHF in 2004. Turns out as little as 5 mg of hydrocodone every 4 hours (well, really about 3.75 mg works), because hydrocodone dissolution rate is about 4 hours.
Hospitals NORMALLY just give that (since it totals 30mg... very low dose.)... BUT... The opioid crisis has almost killed me a dozen times. In fact, I was discharged from the hospital for a Hernia... but I was actually in Congestive Heart Failure! There own records showed it, but...
Anyone on pain meds is AN ADDICT (per the doc at the hosp). Don't drink. Never Been Drunk. Never smoked. Never did drugs. On this LOW DOSE for 25 years... but, hey propaganda means they can treat you like an addict and put you into CHF for their "morals".
This is long winded, but tiny amounts of hydrocodone has WAY fewer side effects and controls RLS way better. If you go back to old literature, they even stated that clearly, but said that stigma was an issue - FOR THE DOCTORS.
By the way, per the CDC/DEA/FDA records and multiple studies since Vietnam... You cannot catch addiction
from any product. It is depended on the person involved and their social situation. A person prone to addiction will tend to use whatever is available. But, since between 97% and 99% on people on Chronic pain treatments DO NOT HAVE ANY ISSUES WITH ADDICTION....
Look instead at how much money the federal and states and attorneys made with these suits, and how many elderly suicides have resulted from not getting the pain meds needed.
I hope that this gives you an idea of the realities of uncommon RLS. It is COMMON, but the name says "legs", so end of story?
Good luck.

Most neurologists don't look. They "know" that a gabapentin is what you give for RLS, despite being given for it OFF LABEL. In was only okayed by the FDA after decades of doctors given it out because some other doctor recommended it. Despite gabapentins causing much worse symptoms and issue for the majority.
My first Neurologist was supposed to very my version on RLS (the form that attacks the Chest/Heart). It has been well known for decades that it can strike anywhere. His first response? It is only in the legs. When I offered to pull it up in the literature? Oh, yeah, okay, your right.
I was there to get veriffied. I already had a tratment that worked. He spent six months trying to get me on Neurontin, Lyrica, basically anything. He finally admitted that he just wanted the monthly appointments so he could make money off me. I left. My PCP simply put the verification in my file and continued with my treatment.
I was on Hydrocodone (20mg per day) for cysts in my spine. We upped in the 22.5 mg a day (three 7.5's I cut in half and took every four hours). I did not have another issue with the RLS until 2016, when the Medical Group my doctor at that time worked for ordered all the doctors to cut off all the patients in the entire building from any "pain meds" and slapped a sign in the lobby. I almost died from the Congestive Heart Failure that followed.
Neurologists and other specialists often just go with the flow or the group or what is "current" as long as it isn't going to possibly effect them. That has been my 25 years of multiple Neurologists. I have found a few who really care, but they are then attacked by the DEA or the supporters of the Opioid Hysteria. They are just people.