Severe RLS solved for me

Thanks for taking the time to compose your detailed and comprehensive report. I wish you continued success!

Wow! What a journey! Not a good one but it sounds like you now have the relief you need and you can keep away from Oregon! I sincerely wish your life each day continues to improve and you are able to enjoy each and every day!

@zombiewoof, what an amazing story of trials and tribulations, you really deserve all the best after your journey, it’s very inspirational to read how you persevered and ultimately found your way back, thank you for sharing this amazing story.

I appreciate your forthcoming with the trials of different reliefs to combat RLS. Many of us have tried different prescriptions, strengths, diets, angles in dealing with this dreaded disease, that many people have no clue how we are suffering. I was ashamed to admit I had it years ago, but have come out into the open to tell family and friends how it controlled my life. I see a sleep specialist doctor from Mayo in Phoenix, and she has been a god-send to me, prescribing buprenorphine tablet at such a small increment, about 1/3 of a 2 mg tablet nightly. My weight is slight and I control it with diet and exercise, competing in tennis and pickleball at nearly age 70. I do find having dessert at night triggers the leg spasms, and eat only a few bites when entertaining or dining at a friend's house.
Good luck to you, and we all wish you well.

That's great. I'm going to have to find me the right doctor. I see a neurologist, and take 2mg requip 6 times a day and I still have the restless leg. I walk and walk. I've cried. It's horrible. I can't take gabapentin, it makes me really spacy. I rub biofreeze, lidocaine lotion on my legs and feet, I get some relief
I'm so glad you found help. That's a miracle.

Dear Lilly71,
I have tried everything out there on the market, and saw a neurologist at the Barrow Institute in Phoenix three years ago. The Barrow is a large and respectable neurological think-tank to help people with RLS in the Parkinsons Center. He placed me on premipexole, which today, is the wrong thing to administer, due to the symptoms become worse, as augmentation occurs. Then he suggested a "drug holiday" the worst thing in the world: you slowly diminish the pramipexole with no other drug aid to get over the hump; then nothing! I was up a night for hours. I ended my relationship with him, and saw another neurologist with Banner Movement Disorder, recommended by the neurosurgeon who placed a spinal cord stimulator in my spine for what I believed could help the pain and RLS. Unfortunately, it didn't help, and I am having it removed next month, after two years. This doctor placed me on methadone, and the panic attacks were scary. Possibly in time, the SCS or a type of device implanted with help with RLS. It is when I received a referral to the sleep specialist at Mayo, who after interviewing me and truly listened I had PLMD, another form of RLS, and treated me with a small speck of buprenorphine. The dose is quite small, .66 mg of a 2 mg tablet. I am so against drugs, and was so worried about augmentation, but after almost one year, it has enabled me to sleep, and travel in a car or an airplane without the leg jerks. Please do not give up, see about the buprenorphine.

Since posting my original entry some things have changed. I was forced to take a “holiday” from my Methadone. What I found when I stopped Methadone was:
1. Gabapentine does nothing to relieve my RLS. I’m going to discontinue taking it.
2. The Neupro (Rotigitine) did not completely quell my RLS. I increased the dosage to 4 mg/24 hr patch but still had significant symptoms.
3. I had significant body pain from my lower back down into my legs amplifying my RLS. I am sure this is why the Neupro did not stop the RLS on its own.

I was off the methadone for four nights. On night three and four I got three hours then 35 minutes of sleep respectively. I was dead tired and in agony on night five so I relented and took 10 mg of Methadone. Within a half of an hour my RLS stopped, I was free of pain, and I fell asleep.

Methadone has undesirable side effects for me. Lesson learned I will now take it on an “as needed” basis only since it acts so quickly once ingested.

I have been a long time suffer with RLS, with some success limiting the occurrence of symptoms. Wearing slippers to bed has eliminated a lot of my RLS. When my toes touch the top of a bedsheet, my feet and toe muscle begin to spasm. I have forgotten to wear my slippers and put them on after I started feeling spasms, and the slippers stopped it from happening. I have no idea why it works for me. However, sometimes it just doesn't work, and I have had to get up and start walking until the cramps and spasms stop. I have been taking 200 mg of Gabapentin, a supplement Mag R&R, and Magnesium supplements. Incidentally, I have other medical issues and as a result, I am taking a 1,000 mg of Mycophenolate, and I have no idea if it has any impact on my RLS.

I have suffered for decades with RLS and found mine was made far worse by the bupropion (wellbutrin) i was taking for depression. I was on 300mgXL and doing fine on just 75 mg now. I was able to reduce my Sinemet which helped a lot from 6 tabs a day to 1/2 tab 3x a day. Be sure to check your meds to see if any cause RLS as a side effect. RLS is often multifactoral in cause but reducing any cause is worth it to get some relief from this miserable problem!

My story is no doubt a variation of the story of everyone suffering from really bad RLS. I identified with zombiewolf's joking/serious mention of traveling to Oregon (where assisted suicide is available) to combat RLS...

I was never suicidal, but one night, just before crawling into bed, the realization hit me that being dead would have been an improvement over the life I was living. That was a scary moment. I cried uncontrollably that night and almost nonstop all the next day. I was so sleep-deprived, miserable and broken. I had insomnia and was anxious about bedtime and had enormous difficulty falling asleep.

Then, I decided I had to find a way out of all the misery---which ultimately I did.

I had thought (for 13 years) that I had a weird muscular problem that strangely only occurred at night. I tried all sorts of non-prescription remedies, physical therapy, and the only thing semi-effective was a heavy duty massager, which I still continue to use (when symptoms strike---the massager is always next to my bed).

I had never considered RLS as causative because my symptoms felt like pain, instead of jerkiness--which is the common description one reads. I've since learned that RLS symptoms can vary quite a bit from person to person.

When I was finally diagnosed, it all made sense. My symptoms only occur when I'm asleep, or drowsy, or sleepy. They stop within a couple minutes, when I get up and walk.

Finding someone to treat me effectively took me another three years.

Fortunately, as soon as I was diagnosed I started to google and found Dr Early's webpage (he's at Johns Hopkins) and read about augmentation. So, when my primary doctor tried to prescribe a dopamine agonist, I refused and we settled on giving gabapentin a try. ...It didn't help, at all. Nor did taking iron supplements pills.

Long story short, pregabalin didn't help either. Nor did an IV iron infusion.

But, finally, buprenorphine has. I take it in the form of Suboxone. Like methadone, Suboxone is primarily used to treat addiction, but it has less side effects than methadone. And, Suboxone is less expensive than a prescription for buprenorphine alone (as my wise sleep neurologist, an expert in treating RLS knows).

(Like slkanowitz I also learned through this doctor which medications made RLS symptoms worse. You need someone well-versed in RLS treatment to have this kind of expert level information, which is critical).

Words can't describe what it means to have my life back. Miraculous comes to mind. I'm not cured. I still have episodes of symptoms, but they are less severe, less frequent, and now tolerable.

My advice to anyone with severe RLS is to first educate yourself about it. Standard treatment, for a long, long time, has been the dopamine agonist drugs which cause augmentation. Most doctors (like my primary) still believe this is appropriate to prescribe, although it is not.

The newest Guidelines for treatment of RLS are on the internet (authored by Winkleman--who practices in at Mass General in Boston-- and Berkowski--who treats via telemedicine in Michigan, Ohio and Florida). Reading these guidelines is a good place to start.

There is a Foundation for RLS and their website has bios of a number of RLS specialists, who serve on their board. My doctor is on the board and has been incredibly helpful, always understanding and supportive. Because RLS can be so awful, it's something that needs to be well-treated and because augmentation means symptoms get much worse, you don't want to be treated incorrectly. This is a situation where going to an expert--instead of settling for the most convenient physician---will pay off.

There is a company in California called Noctrix which has invented a device that is a pair of bands, worn on each leg just below the knee and delivers a "signal" that the brain (where RLS starts) interprets as leg movements--so that RLS symptoms are turned off before they start. This is a research backed therapy that the FDA has approved and my insurance will cover. Soon I will add this device as an additional treatment tool so my RLS will be as well-managed as possible. I mention this because it could be helpful to those who have augmented form of RSL and need all the help they can get. Google their website. It's a small start up company, headed by graduates of Stanford, Berkeley and Princeton (which impresses me). Right now, the device isn't available in every state, because they are still building a nation-wide support team. You have to ask if it is available where you live.

I hope anyone reading this posting, who suffers from RLS, can get effective treatment much sooner than I was able to. I hope your suffering will end soon.