Restless Legs - Any suggestions as seen many doctors and medications

No I have not. I get up and walk and stretch until it goes away and then go back to bed .

Hi Nanci: I've had RLS since 2010, but it was only diagnosed in 2020. My symptoms and the descriptions of RLS I read didn't match. My RLS presents as an unbearable achy pain. I used to not twitch at all--I do now, but not as a major feature. According to my sleep neurologist (an expert treating RLS) many medications do make RLS worse. (One reasons to seek treatment from an expert on RLS---this is not information our primary care doctors seem to have). RLS originates from something neurologically amiss in the brain. I like to think of it like having a seizure--nothing my behavior can control (entirely). I spent years trying to figure out "cause and effect" and then moved on and realized I'm blameless--and, unfortunately, also helpless (without my RLS expert doctor.) Currently, my symptoms are very well controlled. I even have many nights without any symptoms, at all. Previously, I had 1 to 4 episodes every night. Maybe I had a night without symptoms every 3-4 months as an oddity. I am now a long way from 2020, when I developed insomnia and cried for hours and realized death would be an improvement. #1 I take Rx buprenorphine every night. #2. I use a massager on my legs when symptoms start. Before the medication, the massager was a mainstay and helpful. I would wake, feel the RLS pain start, use the massager, which "confused" my nerves and turned off the pain (until 2020, when it stopped being effective). #3 I got an insurance (medicare) paid for Niadra--device for RLS made by the Noctrix Company. This is a relatively new option. It is a pair of bands, worn on both legs below the knee that works kind of like a TENS unit--you turn it on and it makes a brain distracting "buzzing" that turns off the RLS symptoms. Unlike the massager, which needs to be hand-held, the Niadra can be used as I fall back to sleep. And I do. Unfortunately, it is not yet available in all states. Also, it doesn't help when my symptoms are most horribly severe, but it is very helpful for mild to moderately severe. BTW, my RLS is mostly on the side and back of my left thigh and sometimes both thighs and up through my buttocks. I've grown to understand it can present any place, including arms. Like you, I have had late afternoon and early evening RLS (sitting in a chair or lying on the sofa, trying to watch TV). The Niadra has been really great, dissolving the pain during these times. Although it may not be an immediate option for you, it is something to know about and keep in mind. There is no cure for RLS. It's about lifetime management and we need all the tools available to manage it! Google the Noctrix company. My advice is to advocate for yourself by first of all finding and making an appointment with a RLS specialist. A real expert. There is a RLS Foundation, so you could ask for recommendations through them. Google their website. My doctor does telemedicine in Ohio, Florida and Michigan, if you live in any of those states. I don't, but I travel to Ohio to connect with him. I've read in this forum that there is wonderful an expert at Mayo who also prescribes buprenorphine. Stanford (in California) has experts. Mass General in Boston has a number. Dr Early in Baltimore at Johns Hopkins (but he will only see Maryland residents). It takes time to get any appointment with someone "good" but you don't want someone pushing Requip on you (because it leads to augmentation--a worsening of symptoms). I was in crisis when I was motivated to find a good doctor and it took 3 months for my first appointment. A miserable 3 months. Please keep us updated!

I too had a op have had restless legs for 2 years. Tried gabapentin and premiprexol. So depressing and dreaded going to bed. I have been put on an anti depressant and it helps me sleep but with weird dreams but it is the best thing I have been given.

Thank you for these things to research and perhaps try out. The Niadra device sounds interesting. I know that on a bad night, I can put a compression sleeve on my leg and it often helps. Fortunately, replacing Losartan with Lisinopril has helped considerably in reducing my RLS.

I live in New Mexico, home to about 2M people total in the entire state. I live in Santa Fe, so one of the larger towns but there is a shortage of doctors period, and no specialists in restless legs syndrome. The closest that I know of is at the Barrows Institute in Phoenix, AZ. The doctor there will do telemedicine but only after seeing me in person. If I’m ever forced to have back surgery (my back is problematical), Barrows is where I plan to go and then I would also get a consultation with the RLS specialist.

I’m off to to fin out what I can about Niadra. Thank you again for your comment and suggestions!

Would anyone suggest a massage machine for RLS?

About 45 years ago (late 1970's) a doctor told me he thought I had RLS...who the heck ever heard of it back then. It only bothered me occasionally and I did nothing for it. As I moved, I would tell other doctors about it, but most really knew nothing. As I got into my 40's it was bothering more often in the evening. I could go to sleep but tossed and turned all night. By my 50's it was every night and would start around 5 - 7 pm and everything the doctor tried to give me caused an unacceptable reaction....I have reactions to most medications, so it was not a surprise. Turns out maybe that was a good thing as most of the medications for RLS can make it worse. I can take vitamins and supplements and over the years have taken or still take D, B, magnesium, Iron on and on and have been to many doctors over the years. My iron levels are good but have heard there is a possibility my brain is not reregistering the iron and thinks I'm low on iron when blood test show its fine. in my 50's I noticed that I occasionally have it in my arms, which makes for an extra special night when both legs and arms are bothering me. I have actually worn a hole in 2 different bottom sheets from moving so much. For me I discovered what helps one night does not help the next, so I do several things on different nights. Support stockings sometimes help, but occasionally just irritated me. Heat on my back helps often as it helps open you blood vessels. I've had major back surgery, so I know it's not my back. Too much exercise or too little can make it bother me...I'm now 68 and here is what works best for me... I taken tramadol for years as it helps...does not stop it but makes it bearable in the evenings. Mine starts around 5 - 7pm every sing night...anyway...after talking with my doctor I take tramadol, heat wrap and CBD gummy as legal in my state. I take the kind with 1mg or less of THC as not taking it to get high, but to help with my legs and it's been life changing. I'm not saying its 100% helped as some evenings my legs still hurt/ache, but I would say 90% of the time it works to where my legs don't bother me at all or only a little. I've tried the gummy alone and I still have issues, so I take the tramadol, heat, gummy. I've talked to many people over the years and only 1 other person had RLS worse than mine. Even growing up I have leg issues, but was always told it was growing pains...at least with the tramadol, heat and gummy my little dog will sit on my lap as I watch TV...before she would go and sit with her brother and my husband as I moved too much. That was funny in itself as she would be laying with them and staring at mommy as she wanted to be on my lap, but I just moved too much. Hope this helps someone...

Hi Sharshy: Using a massager took care of my RLS symptoms for about 8 years. (After that, I needed medication in addition) Initially, I bought a long-handled double header Brookstone massager that needs to be plugged in. (Brookstone is no longer in business but similar products are available---look on Amazon). Since, then I've bought the kind that can be charged and used without a corded plug in. My symptoms are strong so I need a massager that has a strong vibration. Something powerful. About a year ago, I got a thera-gun type massager. When the symptom (for me RLS presents as an awful achy pain) wasn't too severe, after holding the massager on the symptomatic place of my leg (or legs) for a few minutes (5-10, depending), the symptom would dissipate and I could go back to sleep. I also use it elsewhere on my body as my leg stops hurting. For me, muscular tension makes the RLS worse so a swipe on my shoulder etc. contributes to symptoms stopping. The more severe the symptom, the longer I needed to hold it on my leg(s). The Brookstone type massager (a long handle) worked well in terms of hand-grip, but it weighs 4 1/2 pounds, so not that much fun to pick-up and hold on my leg during the night. The Thera-gun massager has the off-button in a place my finger accidentally can touch and turn off, so I've had a learning curve remembering how to hold it in my hand. I turned to massage equipment because, for years, I thought I had this weird muscular problem that strangely only presented during sleep or sleepiness. I had RLS symptoms for 10 or 11 years before it was diagnosed. I've never read anything in Medical Literature suggesting a massager for RLS, but it did work for me (until my symptoms became more severe). Currently, I also have these Niadra bands---developed specifically for RLS by the Noctrix Company. I read about this in Medical Literature, learned the Noctrix Co name and googled them. Then I contacted them. Their device is based on something called TOMAC (tonic motor activation) which I believe acts in a similar fashion to my massager--confusing nerves and allowing symptoms to stop. Unfortunately, the Niadra bands are only available in a few states right now. When I contacted the company, I was told my state wasn't included, but they kept my email and emailed me a year or year and a half later. I don't own my Niadra bands---Medicare "rents" them for me and pays for the conduction pads needed for their use. Go to PubMed and search the term "TOMAC." Many studies say it works. (Click on a study to go to the abstract and read the research's conclusion section, if all the technical language puts you off). The reason Niadra bands aren't available everywhere (now) is because they require an in-person activation and the company doesn't (yet) have personnel trained to do this everywhere. I think the company only received federal approval about 2-3 years ago. It's newly available technology. Not everyone reads Medical Literature, so I want to share what I've learned. When it does become available in other states, it will require a doctor's order (prescription) and possibly medical records justifying the need (because it is expensive!) In terms of picking out a massager---think about weight and hand comfort while holding it. I would say go more expensive (for stronger vibrations) instead of looking for a bargain. I probably got the Thera-gun during a Prime Day sales on Amazon. It was more the $100 and less than $150--on sale. I hope this helps! I never thought I would be giving RLS advice, but the more we all share, the better off we all will be... Best of luck to you!

Dear 3 Dogs: I don't want to monopolize this thread (after the long posting I just made), but I do want to reach out to you and sympathize. In terms of the severity of my symptoms (unfortunately) I do think I match you. But, not the surface area that causes you to suffer. I am not a complainer---I doubt you are either. RSL is a hard row to hoe. Like you, my experience varies greatly, day to day. It was so helpful for me to read that you have the same lack of consistency. Although the sleep experts warn against heat in bed (circadian rhythm changes our body temperatures over a night and my sleep neurologist tells me my electric blanket causes wakening----but it does give me comfort. In the winter, I often sleep with a heating pad that automatically turns off). Your medication (tramadol) and mine (buprenorphine) are both opiates (because opiates work and because we have good doctors, thank goodness). Like you, my iron is mostly normal on labs, but I did try iron IV and it did nothing to change my symptoms. I don't know why I don't fit what is expected of someone with RLS, but it helps me to know neither to you (exactly) My heart goes out to your woes. I tried a CBD gummy once (before I was put on effective medication) and I lay awake all night with a racing mind and RLS symptoms. For me it didn't work, but I understand why you tried this and I'm glad it works for you. Your posting has helped me understand beyond what I read and what I experience myself. I'm sending you a hug and hope you will continue to share on this forum...

Thanks for all the advice. Its good to know I am not alone with this problem.

Ditto : )