Severe RLS solved for me

Thank you for your reply and experience down this terrible road to find the treatment you needed to combat RLS.
I have written in this forum about RLS, along with the many medications, doctors, treatments, in the past few years. I too have suffered from RLS for over 35 years (one doctor mentioned it was brought on by pregnancy when I was 33) yet it wasn't the type of creepy anxious feeling to move your legs; mine was a un-volunteer response when laying still at night, or sitting for a time (car, theatre) and my leg would kick, and nothing appeared to calm (at times both legs) down. I tried all the many prescriptions, iron infusion, just as you have, and was treated with methadone from a neurologist at the Barrow Institute in Phoenix. I couldn't handle the panic attacks, along with a tragedy in our family, that had me crying in an uncontrollable state. I then finally received a referral at Mayo and saw a sleep specialist, who after listening to me for one hour, she proclaimed I had Periodic Limb Movement Disorder. I was beyond overjoyed to hear her diagnosis, as I knew I had it, yet all the doctors told me it was RLS. She began me on the buprenorphine, sublime, as you are prescribed. I began with 1 mg, and have tapered down to .66 mg nightly. What a difference, and I am not waking up and staying awake during the night for hours. I continue to schedule appointments with her every six months, to review how my condition is.
Augmentation is hell, and to take a "drug holiday" is sure hell, as the Barrow doctor had me do with a drug he prescribed, pramipexole. That drug is the worst and should be banned. No one should use that. The Drug Holiday took weeks to finally get my sleep back, of which then the methadone with another doctor, was prescribed. I ended my relationship with him, saw another doctor with another group, of which I was prescribed methadone once again. Hell all over again.
In short, the buprenorphine has allowed our condition to remain calm at night, and many of the viewers need to look into it. I appreciate your endorsement, and also reading your experiences.

Hi Zombiewoof:

Suboxone is, like methadone, primarily used to treat addiction. It is made of buprenorphine (the part that helps restless leg) and nalox. The nalox mades it so someone with an addiction problem can't take a bunch of Suboxone all at once to get high, while it seems to have no effect when the Suboxone is taken as prescribed (like for me).

Suboxone comes as a rather small film. I'm prescribed just a part of the film and my (clever, dexterous) husband cuts it and places it in slots of my pill container (M-Tu-W etc). The size I take is teeny. Suboxone is absorbed under the tongue where it dissolves. Buprenorphine comes in a pill form (without the nalox), but (according to my doctor) is more expensive than when taken as Suboxone--why that is how he prescribes it.

Interestingly, for me, it doesn't take effect quickly. I go to bed three hours after taking it.

Realize it isn't the Suboxone that works. It's the buprenorphine in the Suboxone.

I really understand your sense of desperation. I stood on the very same ground. I'm sure I now have PTSD from it. Lack of sleep is torturous. Anyone subjected to this torture would become anxious and focused on getting effective treatment. I eventually developed insomnia--I remember one night only sleeping an hour and a half--which was the worse pain I ever experienced. I'm sure my brain caught on to the fact that sleep brought the RLS symptoms and refused to go to sleep to avoid them.

But, with effective treatment, I almost immediately started to fall asleep quickly and effortlessly (and like "normal" people) on a nightly basis. From total desperation to this---Yes, miraculous is what it felt like.

Not that every night is always perfect.

And anxiety does feed the RLS symptoms, so I try to do the things that make my bedtime less stressful. None of the "sleep hygiene" stuff ever made a difference (cold, dark room, with the sleep noise machine going all night etc etc). And, it was recommended that I not read in bed. Nonetheless, I do read a chapter or two, cosy in bed, because it relaxes me. I don't check the time when I shut my Kindle because I don't want to start counting "how many hours of sleep" if my RLS isn't bad and I have something to do the next morning--because that might make me anxious.

For me, I believe nothing was going to make the difference I needed until I was prescribed medication that was effective for me. I believe effective medication is the cornerstone for me. But, even this was not an overnight process. The more time on (what has been for me) the correct course, the more stable RLS management has become.

Zombiewoof: don't give up! I am pulling for you!

The spacing of this "chart" was altered by the forum printing.

: ( The first set if stars is for buprenorphine and the second for methadone. There was a large space between, which the forum took away. I hope you all can still make sense of it. Risk of death 5 stars to buprenorphine and 2 stars to methadone. Pronunciation: 1 star to buprenorphine and 5 stars to methadone... Etc

Suboxone also comes in pill form, just fyi

I'm on the same path. I was seeing a doctor at the movement disorder clinic and now I'm starting with the sleep issues group at mayo. I'm getting pretty desperate. I've been on suboxone for a long time for severe spinal stenosis. It does help rls some but it seems this disease is never conquered, just held back until it regroups to strike again once it finds a way to defeat the newest treatment.