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.