Severe RLS solved for me

Hi friend zombiewoof:

My doctor-- only does telemedicine for patients in Michigan, Ohio and Florida (states where he is licensed). No office. Over the computer.

He also won't take insurance. Initially, that put me off (worried that meant he wanted to fleece me), but actually he doesn't over-charge and giving me back my life (for me) is worth paying out of pocket.

I think about $450 for the initial evaluation and $125 per month (not per contact, for the entire month). (You can quit the monthly anytime).

I travel to Ohio to telemedicine with him once a year (from a motel room) and have to pick up my prescription in Ohio every 90 days. (It's 3 hours round trip for me, but I also get to go to Ikea : )

He wasn't "into" perpetuating having me under his care (for the money). Once I was stable on medication, he would have been happy to turn me back over to my primary doctor to have her write the medication prescription instead--he suggested this.

I just feel safer with him as my RLS doctor--I never want to return to the RLS hell I was in.

In addition, I can email or message or telephone him in between, if I have a question.

Recently, he advised me to take my medication a little closer to bedtime. He is also a sleep expert. It was a good suggestion.

He co-wrote the RLS guidelines with Dr Winkleman (who is at Mass General in Boston--but it is impossible to get an appointment with--I tried once).

My doctor is J Andrew Berkowski, MD. He's a member of the RLS Foundation advisory board. I first saw him in 2021 when he was working at Cleveland Clinic. Smart as a whip and his whole practice is RLS. He is also compassionate--a truly kind man. He understands how difficult RLS is to live with. (I believe his undergraduate degree was a co-major of Religious Studies AND Biochemistry.)

Not helpful information for you if you don't live in (or can travel conveniently to) any of the three states where he is licensed.

Unless you could travel to one of those place for just the evaluation and have your own doctor write prescriptions for you (assuming to get you off Requip, it would be a process of different drugs --not just one prescription and out the door). The problem with not being physically in Michigan, Ohio or Florida is Dr Berkowski can only write prescriptions in those states.

If it isn't too much of an invasion for me to ask, where do you live? I can ask Dr Berkowski for a recommendation of an RLS doctor closer to you, if you can't see him. He isn't the only RLS expert in the country --and he is acquainted with the other "good" RLS doctors who know how to treat RLS effectively.

Also, zombiewoof, your descriptions of suffering take me right back to my own breaking point in the summer of 2021, while I was waiting to get in to see Dr Berkowski. I wasn't quite ready to car-pool with you to Oregon, but if I hadn't gotten his help, I might have been heading that way. When I realized death was better than the suffering I underwent, I cried most of the night and all the next day. Thinking of how I felt then terrifies me, now that I'm "better." I never want to go back to those feelings.

The other thing, zombiewoof, you need to get some Nidra bands. I just read and replied to someone writing about them on another thread of this Mayo board. Did you see it? I got mine in April. After a while of using them, I swear to you I started to have nights with NO symptoms at all. Plus, the bands help when I do have symptoms (unless my symptoms are very severe). My medicare and supplemental paid for them 100%. Google Noctrix Company (in California) and Nidra. Call or email them. That is what I did. Go to YouTube and search the term Nidra there and watch some of their videos. I swear it is not a gimmick. It is a well-designed medical device that you have to have a prescription to get. I googled the people who started the company---all major brains. The first few months of use, I had someone from the company email weekly to be sure I knew how to use it and any questions I had were answered. Nidra bands really, really will help. (They don't replace medication, however. But, as an addition to medication, they do quiet frequency of symptoms)

Noctrix has a list of RLS doctors (on their website) who can prescribe Nidra for you, if your doctor can't. (For insurance to pay, the prescription needs to include the "right" description of your medical need). The doctors on the Noctrix list know how to write the prescription.

But, to get your medication issue "fixed" I don't know that those doctors are "expert" enough. I believe you need someone who has the far end of expertise treating RLS--someone as good as my Dr Berkowski.

As far as getting off Requip, of course that is a good idea. Best, I think, if you can do this with expert medical direction. I know Dr Berkowski has worked with patients who augmented and needed to be switched to different medication. He described this to me as a "process"---not like you can switch medications and go blithely off into the sunset immediately. There may need to be some tinkering as well as time for your brain to readjust.

It is the right way forward.

Also, experts like Dr Berkowski know what other medications make RLS worse---something a non-expert doesn't have a clue about.

I take a low dose of buprenorphine (a couple hours before bedtime) and it is the only thing that had helped me, medication-wise. It's like methadone--usually prescribed for someone with an abuse problem. It's a mild opiate. Causes some constipation. Changed my life (for the better). Gave me back a life.

You are doing the right thing advocating for yourself. It's what I did.

But, dealing with medical-stuff takes time. Getting an appointment with the right doctor can take time. It takes time to get a Nidra delivered and activated.

So, you need to get busy and not delay. You can dig yourself out of that hell.

Please let me know your location and I will help identify RLS specialist(s) for you.

Hi, can you share with me the compounding pharmacy you use for the buprenorphine. Thank you!

@naren2026:
I receive the buprenorphine from Walgreens. The Sleep Specialist from Mayonaren2026 I receive the buprenorphine from Walgreens. The Sleep Specialist from Mayo prescribed it.

I have been suffering with severe RLS as a result of getting off opioids recently after years of daily use. It is one of the most common symptoms of opioid withdrawal and in my case, it is by far the worst symptom. This is why I’m curious about your doctor prescribing methadone to treat RLS. Is her plan to keep you on this for the rest of your life? Will you have to continue upping your dosage as your tolerance builds? The relief must be amazing and I’m glad you feel better but this seems dangerous. If you already had bad RLS and will eventually have to stop taking methadone, isn’t that ultimately going to make matters much worse? It seems like you could be piling on RLS from opioid/methadone withdrawal to an already existing condition of RLS. Or alternatively, continuously increasing the opioids you put in your body over time which isn’t healthy and can lead to addiction. I hope you don’t take offense to my concerns and questions. I’m just in a very similar boat as you and curious what the doctor’s long term plan is here.

@vanjinx
My doctor prescribed methadone because every other medication I tried did not stop my RLS symptoms. On a scale of 1 to 10 for RLS severity I am at an 11. My choice was binary: methadone or a quality of life so unbearable that suicide looked like the only option. I don't say this lightly. I am not a person prone to exaggeration or theatrics.
I take 10-15 mg of methadone daily. The dosage is stable, has been for a while, and I hope it does not increase. My doctor says I should not develop augmentation to it as I did with every dopamine agnostic I was on over the years.
As far as the future. There is a new class of chronic pain medications being developed. The band name is Journavx. It was released for limited use in 2025. Further studies are being performed before it is allowed for RLS chronic neuropathic symptoms. My doctor is monitoring this carefully. We will discuss my options once the medication becomes available. I hope this to be sometime in 2026.
I agree with your assessment pertaining to withdrawal from methadone. I did attempt to stop taking methadone late last year in preparation for eye surgery. It was a horrible experience, so much so that I went back on it after a few days and canceled my surgery.
I have no options at this time but continue with methadone. The future may be Journavx or some other new medication that comes on the market. I don't want to take methadone, and the thought of using it daily for the rest of my life is absolutely not something I want to do. Time will tell. I am extremely grateful for having a sleep specialist doctor who does the research, stays current on the state-of-art, and then guides me through the best possible solution to relieve my RLS.

@vanjinx Hi vanjinx--

I take buprenorphine in the form of Suboxone, which is similar to methadone. Suboxone, primarily, also treats drug addiction problems, but it is effective treating RLS as well---although in a much, much smaller dose than a former drug addict needs to take.

My doctor reviewed the differences in side effects (as well as potential problems) between methadone and buprenorphine (taken as Suboxone) and Suboxone is safer and has less troublesome side effects. Several of us (posters on this forum) take buprenorphine (see above) and are very happy with how well our RLS is managed.

Of course, I would rather take nothing, but if the choice is between RLS torturing me and taking Suboxone the rest of my life, I will continue to take the drug. Sleep deprivation is just too horrible.

In the last 2 and 1/2 years I did have my dosage increased once. This was after a surgery which somehow fed into my RLS. (I think something to do with tightness--exercising or over-stretching that causes tight leg muscles also worsens my RLS).

Evidently, some people's RLS responds best to opiates/opioids. I went through the litany of other medications--which took a couple years and nothing worked. I knew that pain-medicine opioids would work, but my doctor convinced me to try buprenorphine (as Suboxone) instead and he was right. Less side effects than taking Tylenol #3 etc. It's an opioid, but mild--and has no addictive properties.

I wonder why you stopped taking the opioids prescribed for you? Were you having a problem or was it your doctor who had a "problem" writing an opioid prescription?

BTW, my RLS presents as painful--an aching pain that increases and increases with intensity during each episode (if not treated). And, there were typically multiple episodes every night. Some nights it was all just one never-ending episode.

My doctor and I recently discussed this and he told me there is a theory that some RLS sufferers (whose RLS symptoms are painful) have a deficit of endorphins (instead of dopamine). Low dose opioids address this. Not much research on this theory (yet), but I know I never responded to gabapentin, pregabalin, IV iron infusion, etc etc.

The new RLS guidelines (see at the RLS Foundation website) say opioids are an appropriate medication for some people's RLS. There are GI issues--for me less significant than having RLS pain wake me repeatedly every night--and I think less constipating than with pain-medicine type opioids.

You really should look at the RLS Foundation website. A wealth of information there.

Methadone and Suboxone (the buprenorphine part of Suboxone) are not addictive. Yes, with any medication there are side-effects and it's better not to NEED them. But, if needed, taking (in my opinion) is the right course of action. Treating my RLS is as critical as a diabetic needing insulin. It's a forever treatment (because I don't want to live in a state of sleep deprivation ever again.)

This is my story and my perspective. I think you ask good questions. I hope you find the right course of action for you. Let us know how you are doing, please.

Thank you for sharing. I thought I was reading my exact life story. I am 58 and if I had not found an RLS specialist at Mayo Clinic I was ready to also take my life. It is the most unbearable disease and so hard to explain to others who do not have it as.badly as you and I. Mine is called refractory RLS and by the time I got to Mayo I was in Augmentation also. The Restless Leg Foundation helped me find a clinic close by that could help me. I too am on methadone but he started me off on other meds to make sure they didn’t work but when I got to him a neurologist had me on 8 pills a day of carba. dopa leva dopa i was a mess. I had to go on short and long term disability then permanent disability because it affected my life so badly. I am having breakthrough this week and not sure why i was started in jardiance and mounjaro and i have lost a lot of weight and fluids im sure I don’t know what is upsetting the comfort that I had for so long. Congratulations to you and I hope your medication regime will always work for you we are all different.

@missjb Mayo Clinic Rochester Mn has RLS doctors I found the clinic on the Restless Leg Foundation website. i have the Notrix leg bands they work for me some times and if my RLS symptoms are too far gone they ask you not to use them. And mine will come on in a matter of seconds I have been dealing with the this for years finally found relief up at Mayo by being put on opiates. I was ready to not be here anymore I was exhausted. For whatever reason several other med. changes recently my RLS has been disrupted again. It’s so frustrating.

@melwar Hi melwar,

Since my RLS symptoms felt like a muscular problem (an aching feeling that is painful) and not like the typical descriptions of RLS I read online (which I had dismissed as not relevant) it was 10 or 11 years before I had a diagnosis.

I kept returning to physical therapy and wondering what I "did" during the daytime that made some nights so unbearable. I'm a cause-and-effect thinker and it drove me batty not being about to pin down anything behavioral that would give me a sense of control.

Consequently, having the correct diagnosis was a big step forward for me.

On the other hand, this crazy "jump through the hoops" of trying all these ineffective medications delayed any real progress in obtaining successful treatment another couple of years. It's the way medicine operates now. Doctors need to go up a ladder of treatments, often to satisfy insurance, and this has become part of their mind-set.

What I tell myself now is that I do cycle out of "bad" phases--even if I don't understand their exact "cause." My doctor, also, has reminded me that it is a "brain thing" and brains are complicated. I swear I don't feel stressed etc, but whatever happens in my brain may not be something I recognize consciously.

There are great RLS doctors and the Foundation website is certainly the place to find one. You have taken a smart approach. Unfortunately, this doesn't totally protect (any of us) from experiencing some very discouraging up's and down's.

Now, that I have (finally) effective treatment, I think I am even less tolerant of any bad spells. I've experienced reasonably good sleep and I never want to go back to hell-ish nights and insomnia etc etc. ....The knowing that sleep deprivation is worst than death--such a scary realization to face.

Despite having (up to my eyeballs) help from sleep psychologists (plural) and accepting the importance of good sleep hygiene, one thing that helped me was ignoring the advice not to read in bed.

I needed to re-set my unconscious-thinking from "bed is a horrible, scary place" to its something comforting and enjoyable. Reading--in bed-- before I go to sleep-- makes going to bed something I look forward to instead of dreading.

Also, despite advice not to be "hot" in bed (which interferes with sleep cycles), I have an electric blanket that I use to warm the space in advance. I turn it off as soon as I get into bed, but I avoid that brrrr cold sheets sensation. When I slip into bed each night, it is a feeling of ahhhhh and then I open my Kindle.... : )

I reprogramed myself to love getting into bed at night. ...A miracle in itself, when I think where I was coming from.

I'm not suggesting these simple things can solve the problems you are now having, but my RLS (psychologically) caused me to be fearful of bedtime. The more I was afraid, the more I was stuck being unsuccessful getting sleep--the more I became physically tense, which fed into the RLS symptoms coming on. Part of breaking the cycle (for me) was creating a sense that going to bed was comforting.

I find that (for me) sleeping better (which means RLS is less severe and less frequent) begets sleeping better AND sleeping badly begets worse nights.

It's also possible that you need a little more medication. Both doctors and patients want to keep dosage at a minimum. But, I think it's possible that sometimes this can result in an under-dosage. I was stuck on this in the past--like taking the least amount was virtuous. My dose was increased last year and I think, overall, that was good. I still have "bad spells" and don't want to increase the dose more each time that this happens... But, overall, I think increasing my dose was appropriate.

I see you are taking methadone. Maybe, a switch to buprenorphine (a similar, but in my doctor's thinking, a superior drug) would be helpful. Maybe, your current situation needs a change of approach from the doctor--something he (or she) needs to address--not something you can impact by yourself.

I was having a problem with RLS coming on in the early morning--before my usual waking time. I mentioned to my doctor (off-handedly, I never thought to consult him about it) and he suggested I took my medication too early and to take it later (which has helped). My point is I should have asked for his help, but I have this mentality that part of RLS is just needing to endure it--that there aren't answers and all the doctor does is write a prescription. This mentality is counterproductive. A good RLS doctor (like you have at Mayo) should work with you, beyond prescribing medication.

Augmentation--that's a different story and nothing I understand personally. I wish you the best, if this is what you are experiencing.

I have wondered about any limitations of Nidra. No one ever told me not to use it under specific conditions. I was told if it didn't work to set it at a higher number. My RLS symptoms can "build" (intensify and worsen) over about a minute. So, I have time to turn it on before my symptoms are at their worst. ALSO, I have used a large, double headed massager on my legs (mostly the left) since I first developed symptoms (believing these were muscular) and I use this, still, in conjunction with the Nidra.

My theory (not entirely embraced by my RLS doctor's terminology, who BTW walks on water and has had the far end of education on the subject) is that "other messages" to the brain disrupts the RLS signals to my legs. Things like walking, or using the massager, or the Nidra can over-ride the RLS signals. At the height of my worst RLS (before taking medication), the massager ceased to be effective--but now it is a helpful adjunct to the Nidra. I use it for the first couple minutes the Nidra is on, then I put it down and go right back to sleep (as the Nidra continues to run). Also, RLS makes the muscles in my legs contract--get very tight. The massager loosens my muscles and I think that helps. So, the massager (in my theory) is a distraction to the nerves carrying RLS messages, while it also loosens my muscles--Tight muscles (for me) seems to feed into perpetuating RLS symptoms during an episode.

My RLS care is a three prong approach: effective medication is absolutely necessary; acknowledging and addressing the psychological piece by making bedtime pleasant, in my own way, for myself; and the Nidra being able to stop RLS after it begins. None of these things would be effective in isolation. I need all three, working together--each effective in its contribution.

I hope sharing these things with you, melwar, tells you that I understand and that you are not in this alone. My answers may not be your answers, but I still think we learn from each other.

Everyone reading this forum understands and is pulling for you. Please continue to tell us how you are doing--if something new is tried--how you are coping.

@lilly71
Requip is an older medication for restless legs and for some people overtime makes restless legs worse. Increasing the dose works awhile but the restless comes back. No longer first line treatment. See someone from sleep medicine. They will check your blood iron studies.
maybe gabapentin or low dose opioids.
My experience with gabpentin is it makes my pain worse.
I have tried all the meds, the only thing that has worked is low dose opioids. I have used the fentanyl patch, (worked but not the full 3 days) then methadone ( legs were pretty good, but had trouble falling asleep) and currently using Vicodin at 4 PM, 8 PM and midnight. It is working currently. Restless sounds like not a big deal or problem but it’s horrible, I have had many many nights in tears. Not getting sleep until 5 or later, pacing and falling asleep standing up, totally frustrated. I hate it. Sleeping well is such a gift.
I do find other physicians think using Vicodin for restless legs is crazy or any opioid. Always Ask if I tried all these other meds and yes I have. The new medical treatment guidelines have it listed as a treatment. I have had other mds that treat me like I am a drug seeker. Which is so far from the truth would rather not have restless and just sleep like your average person.
Best of luck.