Restless Legs - Any suggestions as seen many doctors and medications

@vikkitennis We live in a complicated world and getting effective RLS treatment is, unfortunately, not easy. I think this forum gives such an excellent opportunity for us to help one other and for good information to be passed around.

When I was first diagnosed, it was by a spine surgeon, so there was time between seeing him and going back to my primary doctor. I used this time to research RLS on the web. So, I learned about augmentation before I went to her for medication and refused the Requip she tried to push on me (started the gabapentin--waste of time for me-- odyssey instead).

I, myself, never considered I had RLS because my symptom is an aching pain. I didn't identify with descriptions I read. My legs (primarily leg thigh--back and side) would have pain come on when I was sleeping or sleepy and walking around stopped it. Anyway, specifically, I sought out a neurologist who knew about augmentation and wouldn't waste my time talking about dopamine agonist drugs. This took a year and 9 months--finding and getting in with the right doctor--but that is a whole different story.

I felt like if I suffered any more than I already did (by getting augmentation), I would think seriously about "going to Oregon" (my euphemism for assisted suicide). Feeling that desperate, hopeless, scared etc etc... I was motivated to find an answer and I did. I was in the deepest hole, but I dug my way out. FIRST STEP: I went to a doctor who is an expert treating RLS.

Vikkitennis, you and I both have arrived at the same place. Not because we take the same medication. Because we are both getting effective treatment. We just had different journeys getting there. I by-passed seeing the series of useless doctors.

Gabapentin or pregabalin seems to work for some people with RLS. But, some of us only respond to opiate/opiods. The 2024 Restless Leg Treatment Guidelines acknowledge this. Suboxone/buprenorphine is an opioid that doesn't have addictive properties and has substantially less "no good" side effects.

The difference between an opioid and an opiate is the first is synthetic (like oxycodone) and the second is natural (like codeine). Our bodies respond to either in basically the same way.

When the FDA approves a drug it is for a specific purpose. Frequently, however, doctors learn that it is good for something else. When it is prescribed for the "something else" that is termed "off label." So, Suboxone was intended to treat addiction (needing to be a large dose) but expert RLS doctors figured out it is a good treatment in a small dose for RLS. The process of getting drug approved for a secondary purpose is arduous and is often skipped. Prescribing "off-label" is common for many things, not just RLS. Actually, the original purpose for gabapentin etc was not for RLS so it is also an off-label prescription for RLS. And, the dopamine agonists--they were used for Parkinson's. I don't know if any drug was developed specifically with our (RLS) population in mind. Some doctors also prescribe antidepressants for RLS. That is an off -label treatment.

Going back to the 1800s, when RLS was first identified as a malady/disease/illness it was recognized that opiates are an effective treatment. Expert RLS doctors today know this. They know the history of treatment.

We have all heard stories of cocaine (?) in early Coca Cola. Late 1800s, early 1900s opiates were accepted and available (sometimes in weird ways for weird things). This switched to controlling nacrotics with restrictions and by law, but doctors were not afraid to prescribe. Most recently, after the opiate crisis, doctors became fearful of prescribing any narcotic, not wanting responsibility for addicting any of their patients. So, something that can be helpful for RLS, became much less available.

I predict, as time passes, word with get out--to both the RLS population and to the doctors--that Suboxone/buprenorphine is both effective and has little drawbacks. Really, although I am very careful about my teeth, I think the risk with a small dose is covered just by the waiting and standard good brushing. It only comes up as a warning because Suboxone was developed for treating-addiction use and for that there are substantial risks and horrendous dental problems.

Suboxone (truly it's the buprenorphine in Suboxone) works for RLS because it is an opioid--but it doesn't have the addictive properties of something like oxycodone. (Not that oxycodone isn't appropriate for some use--it certainly is--and it isn't like everyone taking oxycodone is immediately addicted. For a few days after a surgery, it is great!) I digress... The buprenorphine doesn't give a "high" or cause any cravings. It just goes to the opiate receptors in our bodies (we all have them) and for an addict (trying to stay off drugs) or for someone with RLS (trying to sleep) having the opiate receptor filled with buprenorphine (in Suboxone) is effective.

I am sure darkflowa23 was trying to be helpful and was sincere in the posting about Suboxone. An addict taking large amounts of Suboxone would have incredibly horrible dental issues. Observing this would get any kind-hearted person's attention. Darkflowa23 has never been prescribed Suboxone or the difference in dosage would have been understood, I'm sure. And the Kratom suggestion--I googled it and Kratom does act like an opiate on the body. So, I don't doubt when darkflowa23 says "it works" that it does. Nonetheless, I am personally in favor of prescription drugs as opposed to a supplement. I feel safe having the benefit of both medical doctor and pharmacist oversight. I disagree with what darkflowa23 recommended to this forum, but I believe there were reasons--coming from a good heart--that made these recommendations come out. And, it has given opportunity to have a deeper discussion. (Look, we even got a Mayo Connect Director to step in with comments!!!!) I totally respect Mayo's position on Kratom. It's like taking a "street drug"---lacks the quality control piece. Maybe, someday, supplements will have the scrutiny and precise handling of dosage that legitimate pharmaceutical drugs have. Obviously, there are supplements with good properties. But as things stand now, particularly with something that has potential to be dangerous like Kratom--I think better to stick with what the FDA has approved. Anyway, I want to thank darkflowa23 for bringing these things up for discussion. As a nurse, working with that population--you are a good, kind person! These are things that should be discussed in this forum. Thank you for getting the ball rolling!

I’ve had RLS for years. Worse in the afternoons & night times. A dr prescribed Ropinirole. It’s helped me tremendously. I couldn’t sleep due to having to move legs:

(PD) and Restless Legs Syndrome (RLS) by mimicking dopamine, improving muscle stiffness, tremors, and poor control, rather than directly relaxing muscles. It works by stimulating dopamine receptors in the brain to control movement, reducing symptoms associated with low dopamine levels.

Have you tried compression stockings?
Sounds weird but works many.
I have the creepy crawly feeling and the need to move legs every few seconds.
The pressure of the stockings seems to reduce the need to move. A survey a few years ago seemed to show it worked for many with RLS. Can’t hurt to try.

@missjb,
Thank you for a very long detailed analysis of the RLS treatment we both know is god-send. I really enjoyed reading the information provided allowing this knowledge to know, the buprenorphine Suboxone is a passage for me to receive the sleep we are deprived of.
I knew you were a nurse! Probably a very good one. Your facts support the science that allowed the FDA to approve this treatment.
Yes, it was neat a Mayo Connect Director stepped in to support the Suboxone.
I am pleased I live in Phoenix and have Mayo 40 minutes away; I am from Central Valley of Northern California, moved to Arizona ten years ago. I am afraid the doctors continue to treat their patients with the many medications that we augmented.
Take Care, and thank you again for your introspective on the buprenorphine Suboxone.

@vikkitennis Actually, I was lauding darkflowa23 for her work as a nurse with x-addicts incarcerated in maximum security with horrendous dental problems (and probably bad attitudes from their miserable situation). I've never worked in a prison, but I can imagine how difficult--for both inmates and staff. While I disagreed with darkflowa's recommendation, I am in awe of the fortitude she must have.

My mom retired in Yolo County in the '70s. Rumsey (on Cache Creek). I am familiar with dry heat! Small world : )

@drwass2 Hi drwass2, If I can figure out how to start a separate thread in this sleep forum, I will start one on "non-medication measures that help with RLS." I think your experience with compression stockings is interesting and, no doubt, effective for you--maybe could be for other people--but discussion of it might get lost within longer threats without that subject title. Even with effective medication and my (prescription Nidra) I still occasionally still use my 4.5 pound Brookstone two-headed massager on my legs and I sleep with a sack of rice intended to lay my leg against--measures from my pre-effective medication days. If my symptoms were in my calves instead of thighs, (and I didn't Nidra on my calves already) I might try compression stockings. Best to you! I hope it keeps working for you!

@missjb
Yes, we should have a non medical sub category. There is a RLS group which does have it. I originally wrapped my leg with ace bandages, sort of like your rice bag treatment. One day after looking like a mummy I thought that compression stockings might make more sense. I use full length, thigh high medical grade compression stockings. One could try starting with department store support stockings but I would suggest real graduated medical grade stockings. They can be expensive. I have found Ames Walker brand to be reasonable,
As a male, I suggest everyone give it try. Anything, with basically no systemic side effects is worth the try. Last time I recommended it, most people answered why it won’t work for them, without even trying it. Someone did a question survey about various treatments for RLS, and turns out the best result was with compression stockings.
My RLS has seemed to have gone away mostly now, Don’t know why! I have the creepy crawly kind, no pain, just an unstoppable NEED to move. The stocking seem to satisfy the need to move even though I may still have a the feeling. Sort of like the help you get with weight on legs.
Again, thanks for your suggestion and give it a try, I get the RLS in my thighs and sometimes in my arms where I tried a compression sleeve. Got to give it a try.
So far no meds other than Iron pills to keep the ferritin etc up.
If you need help in ordering the full thigh high stockings just put up a post requesting help. They are based on ankle, calf, and thigh circumference plus length. Also various levels of compression. I picked 20- 30mm
Good luck 👍

@drwass2 Hello. Yes, RL keep me up all night (actually just one leg...is that possible??)--do you wear the stockings all nite? or just during the day?

Has anyone checked your iron levels?
Low iron can be a problem. Usually me of the first things they should do.

I get iron infusions about every 6 months.
I have lots of belly surgeries so I don’t absorb iron well

I tried lots of meds with no relief
Gabapentin gave me lots of pain, so no thank you but for the next person it works great.

Lots of people take a low dose of opioids at night and fine that helps a lot.

That’s the only thing that’s helped me a lot.

Google National sleep guidelines
Reading those should help you understand iron and the main meds used to treat restless legs.

There is also a new device in the last couple of years called Nidra
I haven’t used it but many people say it helps a lot.

Good luck

I have RLS, my grandma, my sister and cousin we all have it. RLS tends to be genetic.
I’m at the point where the first drug I was using Ropinrole (sp) stopped working. My neurologist prescribed another, but I’m finding that the twinges are starting to return.
For me it gets so bad, I go absolutely crazy. My sister puts a heavy blanket on her legs.
I hate RLS!