Restless Legs - Any suggestions as seen many doctors and medications

@beetle1 Hi beetle1 ----I did 6 months of gabapentin and 3 or 4 months of pregabalin. Neither was effective. I also take buprenorphine now and this has been very effective. I got Nidra in April 2025 and the combination of buprenorphine and Nidra has been amazing for me. In the last 16 days I have only had RLS symptoms one night and the Nidra stopped these within couple minutes and I was back to sleep. For some reason, the Nidra is known to diminish the frequency people get RLS. Maybe retrains the brain ??? I was skeptical but that has been my experience. This took a while for me. Also, a few weeks ago my sleep neurologist suggested I take the subloxone closer to the time I go to sleep. That seemed to aline all my stars and planets. This is my longest time (number of days) without RLS symptoms. A year ago, I would not have thought possible. Maybe your doctor should read the Restless Leg Syndrome guidelines and prescribe buprenorphine for you. Also, the Noctrix Company (that makes the Nidra) has a list of doctors who you can see for prescription if your MD doesn't seem to do it in an acceptable way. When mine was prescribed I was warned (by Noctrix) if the patient history wasn't adequate insurance (in my case Medicare) would deny. Also, unfortunately I believe Nidra is not yet available in all 50 states (because they need to establish a support team in each state first---I had to have mine send to a friend's address in Ohio and went there for "activation.") In any case, advocate for yourself. The majority of doctors continue to treat ineffectively or prescribe dopamine agonists (which cause augmentation). Show your doctor the RLS guidelines. Pramipexole is a dopamine agonist. Personally, I will never take that class of drugs--they work until they don't and then they make RLS symptoms worse. Best of luck to you! I wouldn't wish RLS on anyone. Nothing has been more painful in my life than sleep deprivation.

@missjb
Thanks for the reply and also @vikkitennis. I don't see my neurologist until April, but I will be sure to ask her about the buprenorphine that both of you have had some success with. I'm a little bit patient at the moment because with the lower dose pregabalin along with iron and magnesium things are much improved. No longer have the uncontrolled knee jerk in the evening or in bed, but I do have toe tapping like nervous energy, and at night I have some RLS symptoms that I can fight through without needing to get up and walk.

When we applied for the Nidra I was told by the neurologist that I would have no problem getting it approved since I have a long history of ineffective medication help. Took so long for the first insurance rejection and have not heard anything on the response that I think the neurolgist sends to Noctrix and they send to insurance??? Not sure. I guess I'll find out in April

I do have tingling in the middle of the night that I associate with the RLS. Sometimes mild but sometimes it feels like my foot is ready to explode. Getting up or tangling me feet lower off the bed does alleviate it. Does anyone else with RLS have similar tingling? Just wondering whether it is part of the RLS or whether there is some other neurological condition or some arterial problem such as Peripheral Artery Disease (PAD). So many things.

I am 79 and taking a trip soon to costa rica with my wife and granddaughter. I take along some Norco as it is the only thing for me that stops RLS completely for me (while still on the pregabalin). Being confined to tight airline seats, different sleep settings, alcoholic drinks will make it worse and this helps and I don't feel a little opioid temporarily is a bad thing.

@beetle1 Hi, again, beetle1. Last month, I had a discussion about the possible underlying cause of my RLS with my neurologist. Interestingly, everything that is diagnosed as RLS may not be exactly the same thing (and may not have the same cause). My symptoms present as pain (an aching pain). The doctor said there is conjecture that painful RLS is from lack of endorphins, not low Iron in the brain (the cause of typical RLS)--which makes sense since he tried IV iron for me and it did nothing. My RLS pain is also in the back and sides of my thighs, not calves. Since you responded to iron, my guess is we may have similar symptoms but possibly different underlying causation. I don't know what that might mean in terms of treatment effectiveness.

My symptoms "build" in painfulness after they start. I don't have an exploding sensation, but it increases and increases and increases in intensity--quickly is unbearable. Maybe, that is similar? I do have sometimes in the car on a long trip or lying on the couch watching TV at night--awake, but relaxed and maybe sleepy. Mostly, though, RLS has been something that happens to me in bed--trying to fall asleep or waking me from sleeping.

I did have a really bad spell (with RLS) from early Dec to mid-January. In November, I stopped exercising (long trip and then I was sick). When I started exercising again, that exacerbated the RLS pain and nothing I did could relieve it. Eventually, my body got used to the exercises, again, and my RLS returned to well controlled. I need to be very careful not to overstretch my hamstrings or overdo exercises. This is difficult because "only a little" can sometimes be overdoing.

Buprenorphine (my medication) is a weak-kind-of- opioid. I take it as subloxone, which is like methadone--prescribed for people with drug addition problems. In people with addiction issues, subloxone satisfies cravings without creating a "high." I have to remember to take it--so, it doesn't cause cravings or have any risk of addiction for me. Plus, for RLS it is taken in a much lower dose than for someone with addiction problems. My doctor prescribes subloxone instead of plain-buprenorphine because it is less expensive. Others on this board take plain buprenorphine.

I really have only ever responded to Norco-type medication. Despite the opioid crisis (that makes doctors afraid to prescribe pain medicine) if a narco-drug is all that works so we can sleep--it is a good and helpful thing.

One of the sleep psychologists I saw (I tried everything) said that people with sleep issues typically sleep better away from home. I don't know why this is true but I know I identify with this. I hope you do well on your trip--sleep like a baby!

Since I started taking buprenorphine, I stopped drinking anything alcoholic. Nocro-drugs and alcohol aren't a good mixture and I figure my liver has enough work.

I used massagers on my legs before I got the Nidra (with some relief and I still use sometimes in combination with the Nidra and medication). I have one with a rechargeable battery that I take in the car for long trips. I know what you mean about sitting in the airplane. Maybe (if your wife has a large purse) you could take a massager with you. Mine is powerful--some dinky massager wouldn't work for me. My theory is it distracts the messages from my brain (or to my brain)--like walking does, but with less work.

As far as the Nidra, I think you said you have periodic limb movement as well as RLS. Maybe, your physician emphasized that diagnosis instead of the RLS or included something about it. The Noctrix people told me insurance was persnickety about what the prescribing doctors wrote. My doctor is expert regarding RLS (that is all he treats) and whatever he wrote was accepted immediately.

I googled Noctrix when I first read about Nidra in the medical literature on PubMed. I contacted them. Very nice responsiveness, but no way for me to get a Nidra. At that time, Nidra was only available in a few states--not where I lived and for a year they wouldn't let me go out-of-state to Ohio to get one. Since April, when got mine, I have seen the Nidra availability map now includes almost every state. So, my guess is they may be swamped with prescriptions that need tweaking to make insurance happy. Nidra has only been available for a few years, so relatively new to insurance companies (that aren't exactly on our side, are they?)

In any case, it wouldn't hurt for you to email or call Noctrix. I no longer have the email address of the nurse I talked to in their corporate office and I can't remember how I got it--probably on their website. It seems a good company. I also googled their board of directors--checked them out. Impressive.

I feel very fortunate that I learned about Nidra early and pursued getting one. It did take a while for it to increase in effectiveness--like my brain getting used to it--not like it was unpleasant or anything like that. Although I now seem to be in a great place without RLS every night, I would not think of going to bed without putting the Nidra bands on.

Each of us is unique in our experiences, but I hope by sharing mine it is helpful to you. Have a WONDERFUL TRIP!!!! Have fun and take care of yourself.

@beetle1 I am very sorry to hear of your experience with RLS and for a very long time. I too have experienced a form of RLS called Periodic Limb Movement Disorder (PLMD) for over 35 years. I too have tried everything put out there, saw 3-4 neurologists who would prescribe Neurpo Patch, then pramipexole (the worst, especially when augmentation occurs and you gonna Drug Holiday!)
I am seeing a sleep specialist at Mayo in Phoenix currently, and after listening to the many episodes of the leg jerks and living on 2-3 hours of sleep, she prescribed a tablet, an opiate called buprenorphine. I take .66 per night, and what a difference. At first, I was very resistant to it, as I never have done drugs, but she assured me this is what I would need to achieve the sleep I was deprived of. I have been on it for almost two years, and had a sleep study recently, which recorded many leg jerks per hour without my knowledge. I am set to have a daytime sleep study to see if it occurs lying down for two hours, reading or watching tv. Interesting. There is hope out there. I have heard about the Nidra bands, and I wish you well.

@vikkitennis do not believe what they tell about suboxone!!!
Im a psych nurse, in a isolation ward at a max security prison. Suboxone will rot your teeth out. It is no different than methadone usage. Drs who prescribe it get kick backs from the makers. There are dozens of law suites now against makers of suboxone for dental decay. You want help with RLS? I use kratom. Not that 7-oh crap. Just basic, pure leaf kratom. 2 dose at night 1 hour before bed. I used to take tramadol for over 10 years. I started to augment in 2024 and needed something else. I dont want any other opiates. Prgab is gabapentin. Doesnt work. Benzos you build a tolerance. I have been using kratom over a year now and have had no problems. There have been times I stopped and never had withdrawals. I never feel dizzy or ‘high’. Please reconsider your use of suboxone.

@vikkitennis do not believe what they tell about suboxone!!!
Im a psych nurse, in a isolation ward at a max security prison. Suboxone will rot your teeth out. It is no different than methadone usage. Drs who prescribe it get kick backs from the makers. There are dozens of law suites now against makers of suboxone for dental decay. You want help with RLS? I use kratom. Not that 7-oh crap. Just basic, pure leaf kratom. 2 dose at night 1 hour before bed. I used to take tramadol for over 10 years. I started to augment in 2024 and needed something else. I dont want any other opiates. Prgab is gabapentin. Doesnt work. Benzos you build a tolerance. I have been using kratom over a year now and have had no problems. There have been times I stopped and never had withdrawals. I never feel dizzy or ‘high’. Please reconsider your use of suboxone.

@darkflowa23
I looked up Kratom, and the Mayo Clinic doesn't approve of its' use.The side effects appear to be worse than the bupreoprhine Suboxone, especially with long-time use.
I will discuss this with my sleep specialist at Mayo, but I can read her face and her answers as I type: She will be very cautious and prohibit the usage of it.

@darkflowa23
I looked up Kratom, and the Mayo Clinic doesn't approve of its' use.The side effects appear to be worse than the bupreoprhine Suboxone, especially with long-time use.
I will discuss this with my sleep specialist at Mayo, but I can read her face and her answers as I type: She will be very cautious and prohibit the usage of it.

@vikkitennis, you're wise to consult with your sleep specialist at Mayo Clinic.

Some people swear by kratom for lifting mood and boosting energy, but there are many safety issues and questions about whether kratom works.

Here's an article from Mayo Clinic
- Kratom: Unsafe and ineffective https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/kratom/art-20402171

Researchers continue to study the effects of kratom. Studies so far have found that kratom has many safety issues.

Hi vikkitennis Yes... Here is the Mayo website regarding Kratom: https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/kratom/art-20402171

The potential for dental issues with Suboxone are well-known. As the printed hand-out from the pharmacist-- always attached to the medication--explains. Mainly, it is important to wait an hour (or more) between taking the medication and brushing teeth. The medication is quite acidic. And, to take it, it needs to dissolve in the mouth.

Suboxone's reputation for creating dental problems comes from the fact that historically (and primarily) it has been prescribed for addiction problems. In that population, as darkflowa23 described, it is a huge, ugly deal--due to the fact that large doses are needed to treat addiction. ...The doses prescribed for RLS are much, much smaller.

I discussed dental risks with both my sleep neurologist and my dentist when it was first prescribed for me. Neither of these smart, caring professionals was, in any way, concerned about me taking Suboxone, because the dose prescribed for RLS is so small. Still, I make sure I wait between taking the medication and brushing my teeth. I see my dentist regularly.

I doubt a prisoner in a maximum security prison practices the same level of oral hygiene that I do. Additionally, I understand the Suboxone dose for addiction is at least 6 times to 12 times the amounts prescribed for RLS. And, these prisoners, most probably, had horrible oral hygiene during addiction, before they ever started taking Suboxone.

Certainly, Suboxone is responsible--to a large extent-- for the dental woes of that population. But, the population of prisoners in maximum security taking Suboxone for addiction problems does not share characteristics with those of us taking Suboxone for RLS. Condemning Suboxone for RLS--based on the dental nightmare exhibited by that (previously addicted) prison population (taking large doses of Suboxone)--- isn't really looking at root-causes or making logical comparisons.

I have taken Suboxone for over two years without any dental problems--none observed by my dentist and none noticed by me. I would be naive not to recognize there hasn't been long, long-term observations of dental effects of tiny dose Suboxone--no 25 years of observations--because it hasn't been available that long to people with RLS. And, I am aware there are potential risks with any medication.

Nonetheless, I am completely and totally satisfied that this drug was carefully considered by my doctor (a brilliant man) before he started subscribing it. There is not one nuance of RLS medications he has not studied. I know he commonly prescribes it and I believe if there were ANY dental problems in ANY of his patients, he wouldn't.

I credit Suboxone with the fact I have had only one episode of RLS in the last 19 days (and counting--I am on a roll!) After living in sleepless hell, for years, I am so grateful.

Of course, I would prefer to take no medications. But, the choice of not-sleeping and sleeping? I pick having my RLS under control and finally being able to sleep.

And, the choice between an FDA approved medication and an unregulated and untested supplement (that Mayo warns against)? Our medical system is imperfect, but it has more smart people involved and more safe guards for patients. For me, it will always be my choice.

And, a Mayo clinical warning? I have great respect for what Mayo shares online. If I have a medical/health question I'm googling, I give credence to what I read on a Mayo Clinic website.

I don't doubt the experience darkflowa23 describes she has had. But, I disagree with a criticism of Suboxone based on comparison to a population and a dosage that has very different characteristics than that of typical sufferer of RLS.

I believe in science based medical care. That is what I sought out when RLS was beating me and that is what turned my life around.

My houses catches on fire, I'm grabbing my Suboxone first, before I run out...

The best to all of you!