RLS constantly changing
Posted: Fri Sep 15, 2023 5:16 pm
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.
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.