RLS constantly changing

[Stainless]

I've had significant RLS my whole life. Started as movement of my legs I was not even aware of until my brothers told me decades later.
Then in my mid teens it became an annoying urge to move my legs when I was watching TV or similar activities.
I believe I had PLMS even then but nobody in my room to tell me. On a camping trip I was told I was kicking the side of the tent.
Then a few years later I was informed I rocked my legs as I fell asleep as reported by first partner to sleep over.
Then it impacted travel in a car or plane that I just had to get past.
Then it progressed to kicking as reported by later partners. One kicked me back. I let her go.
Then I was prescribed Clonazepam. I had same annoying urge to move my legs when at rest but slept like a baby.
That got me through the next fifteen years, slept though the night, woke up refreshed and finished an exciting carrier. I was informed by my partner I still kicked at night as proven on video.
Then I retired and got off Clonazepam because it is a nasty drug. That led to quickly augmenting on dopamine agonists.
Back on clonazepam for a few more years until I started waking with significant pain in my thighs that goes away once I move about.
Now with a neurologist pregabalin was added. I am still not sure how much it helps but I can usually fall asleep quickly.
I tried marijuana and kratom without success. I was advised to get Horizant from Canada. Haven't tried that yet.
Neurologist does not have any other wisdom or drugs to prescribe and encourages me to find a specialist.
I've seen specialists, even out of state, even a doctor who also suffered from it. No miracle cure yet.
I still wake at night or from a nap feeling like I got hit with a baseball bat across the thighs. Still I can walk it off quickly, telling me it is all neurological and no physical damage yet.
I had a battle with throat cancer this year and was prescribed opioids you could never get for RLS in Florida. They offered temporary help but nothing lasting. Luckily cancer treatment went as well as could be hoped for.
I posted this as therapy but also wonder if other long term sufferers have similar stories.

[Rustsmith]

I don't know about any symptoms prior to memories of problems on long plane flights when I was in my mid to late 20's. My job required regular overseas travel and I always had problems sleeping on the plane, so I just got used to reading and regularly getting up to walk around. The problem gradually got worse over time. I particularly remember a trans-Pacific flight where we left Los Angeles at midnight. I was dead tired and with a 12 hr flight, had to get some sleep. The seat next to me was empty, so I first tried sleeping on the floor, but that was far too cold even with blankets underneath me. I tried curling up on the two seats, but my legs wouldn't calm down. I finally lowered the back rest of both seats, laid on the seat cushions and put my legs up on the other seat. I finally got some sleep, but when I had to get up to use the bathroom, my blood pressure dropped when I stood due to sleeping with my legs that far up and I passed out. Thankfully, I woke up before anyone found me.
Over the years, I did lots of things to get by. Sleeping flat on multiple seats (when possible) or getting the flight attendants to get me extra blankets to sleep on the floor between seats (not the aisle). Many, many hours of walking the aisles, standing the the flight attendant's station eating snacks, etc.
Through all of this, I was never diagnosed and always believed that everyone had this problem.
Then I retired in my mid-50's because the travel was getting to be too much. For some reason, I was fine for about four months and then my RLS went from moderate to very severe. My RLS went from just my legs to my abs as well. To get to sleep, I would need to do fetal clenches to calm my abs and legs. I was being treated for migraines by a neurologist and complained to her. She ran an EEG and said I was fine. That lady never did understand. She prescribed a variety of sleep aids (trazadone, Ambien, Lunesta). I took Lunesta for about 4 yrs. It helped at first and then faded. The doctor said she had nothing else to offer other than a referral to a psychiatrist. After about four months of almost no sleep, I was so desperate that I found a sleep doctor myself. The PA for the sleep doctor had me diagnosed in about 30 seconds, even before she scored my IRLSSG questionnaire. She put me on pramipexole, but I augmented (she said it was tolerance) after a year. So she put me on Neupro. When it came time to get a refill on my patches, the PA couldn't be bothered to process my request for a refill. Fortunately, I had already found the Foundation and the discussion board. I called the Foundation and they pointed me to Dr Ondo (I was living in Houston at the time). I was fortunate enough to get an appointment with him in 30 days. He left me on Neupro, which worked well for about 15 months before I augmented on it too. Then things got complicated. I was in the process of moving to Colorado, so Dr Ondo didn't want to start me on opioids. He switched me back to high doses of pramipexole until I could find a new doctor in Colorado. That turned out to be difficult because no doctor in my new town was willing to prescribe an opioid for anything at all. I finally found a doctor at the state medical school that was 100 miles away. She put me on methadone and the first dose was like the taking the first dose of dopamine. My RLS magically disappeared. After about six months, I started to develop severe depression (near suicidal levels). My doctor played around with my meds. I eventually started on a regime of switching between methadone and Tramadol ER every six months to manage the side effects of each. That went on for several years until I discovered on my own that the methadone was suppressing my testosterone levels and low free testosterone was causing the depression side effect. I went on hormone replacement therapy three years ago and have been on methadone ever since. Unfortunately, all that time on Tramadol ER left me with Post SSRI Sexual Dysfunction (tramadol is an SNRI anti-depressant as well as an opioid, something most doctors don't realize). So, not only do I have to deal with the effects of being post-augmentation, but also have to get used to the sexual dysfunction, which is not treatable.

[Polar Bear]

I'm fortunate that although I have had rls 24/7 for 35+ years, I don't have PLMS. My first rls episode hit me one afternoon while sitting on the sofa. It was pretty much 24/7 immediately including my arms. It was 15 years before I was prescribed medication. I live in the UK and was on holiday in the US when my husband saw ropinerole advertised on tv. Back in the UK I asked my doctor for it, he hadn't even known of it. It was never a great success and eventually I augmented on a dose of 5mg spread over 24 hours. Spent 10 months weaning off. I am now prescribed pregabalin and cocodamol with a reasonable result.

I do wake up with severe hip pain which I can walk off. It's believed to be caused by compression of nerves coming out of the spinal column.

[Stainless]

Thx for the replies. I have had RLS move to my arms on occasion but never stays around. It's a terrible feeling. I used to think it was all in my calfs but what I have today is definitely all in my thighs. I rack my brain trying to figure out cause and effect but never do. The disease seems to change and today I can travel fairly well unless it is a long overseas trip. Right now daytime RLS is manageable, daytime PLMS nonexistent but 2 am pain is brutal.

I need to video myself to better understand current nighttime PLMS. I bought a wildlife motion sensitive camera but have not used it in years. I was amazed first time I used it. Burned the batteries out in a few hours turning on and off.

[Frunobulax]

I had "restless arms" (urge to move only in the arms, not the rest of my body) when I tried gabapentin and came off pramipexol/mirapex. But that was 10 years ago. Now it's either legs or my whole body.