Restless Leg Syndrome

I understand you must have seen a sleep specialist, or the neurologist knows the latest news with RLS.
I too suffer with a form of RLS: Periodic Limb Movement Disorder or PLMD.
I see a sleep specialist at Mayo in Phoenix, for the past 1.5 years. After many neurologists claiming I had RLS, prescribed with all the medications out there in the market, she prescribed buphrenorphine sublex at a very small dose. It is in 2 mg increments, but I take 1/3 go a 2 mg tablet. I should take 1/2 of a pill, but it is GI binding, and I am to be careful for blockage.
It has helped immensely, yet I believe due to our travel schedule, my bio-rhythms are off. I scheduled an appointment to see her soon.
Pramipexole is the worst you can be on: augmentation will set in, and then they ask you to take a "drug holiday" which is to wean off, and stop with no added prescriptions to help you get by. It is not to be prescribed as many neurologists are beginning to understand this. I was on it for over 1 year, and at a dose to be acceptable, I had to have it increased up to 10 mg or more.
Good luck to you, no one should be sleeping in a recliner night after night.

Most treatment of RLS hasn't caught up with what is effective. For effective treatment, you need to see someone who specializes in treating RLS.

I also take buprenorphine. I was also taking 1/3 dose but after surgery in February I have needed 1/4. It is similar to methadone. It is constipating. But, it is helpful. (I love it---changed my life!!!)

I also have a Nidra device that I wear every night. Nidra is an FDA approved, medicare paid for, set of bands to be worn at night and activated when RLS symptoms start. It isn't available everywhere yet. The Noctrix company in California makes them. You can contact them for information. They have a website and phone number.

Both the medication and the Nidra (in combination) have helped substantially. With RLS, nothing is perfect, but in the last few months, I've gone from symptoms (often multiple times) every night to only having symptoms about half of the nights.

This was a Nidra claim (decreasing symptom frequency)--in my understanding, it retrains the brain through its use. ??? I was skeptical, but it has been my personal experience that my symptoms are now less severe and less frequent.

....After years of RLS pain, this is unbelievable to me. My treatment goal, initially, was to have the pain stop quickly so I could just go back to sleep. I never thought I could have nights without any symptoms at all.

I see a RLS neurologist via telemedicine. He is licensed to treat only in Michigan and Ohio. I met him when he was working at Cleveland Clinic. He doesn't take insurance, but doesn't overcharge. I travel to Ohio for my telemedicine appointments. I travel there to get my prescription filled.

There are RLS specialists at Mass General in Boston. Winkleman is there but it's impossible to see him (I tried several years ago). One of the other sleep neurologists there would do just as well. (Winkleman has researched and published about how opioids/opiates are appropriate to prescribe for RLS and don't cause addiction/problems. My neurologist agrees with this. I can give you the citation of Winkleman's articles if you like)

Johns Hopkins has specialists but Dr Early won't take out-of-state patients (I tried to get in there, years ago, too)

Stanford in California has good RLS doctors. My neurologist trained there and thinks highly of them.

Mayo does, of course.

Contact the RLS Foundation for other doctors, if none I mention are in your vicinity--or in your driving range. Google the RLS foundation. They are there to help. They understand how RLS needs to be treated.

The first step, for any of us, must be seeing a doctor who understands how to treat RLS. It is worth the effort. It makes all the difference.

My symptoms are worsened by overstretching and I've been taking physical therapy. My medication/Nidra won't override symptoms if I have overstretched. It's not like I take the medicine and it's 100% effective all of the time. On the other hand, in the last 14 days, I have only had symptoms on 7 nights. (Hurray for me! Sasesshines and everyone on this forum--I want you all to stop suffering, too---It starts with advocating for yourself. Finding a knowledgeable doctor)

In October 2023, I cried non-stop and realized death was better than how RLS made my life. Then (motivated by how horrible my life had become), I made an appointment with a RLS specialist. I understand the word: unbearable.

Like you, my RLS has always presented as pain. Unbearable pain. Within a minute after onset, I would have rated it as a 10. In the last two weeks, when I have had RLS pain, I would have rated it a 3-5.

I also use a long handled massager on the areas that hurt (along the outsides on my thighs and sometimes up into my buttocks). That helps, too. And, doesn't need a prescription.

Please keep us posted, Saseshines! I hope sharing my story --my success--will help you.

I cannot take Gabapentin. When I tried it many years ago for Fibromyalgia, my legs swelled terribly and I gained 29 pounds very quickly. Had to get off the med. Then we moved and the new doctor put me on Ropinirole. It worked until it didn’t. My iron is low and I am taking iron bisglycinate.