At My Wits End
A bit of background. I've had RLS my entire life, as long as I can remember. I didn't know it was a thing until I was about 27. My PCP put me on Requip of course. Started low. Ended up over the years going up to 6mg. Eventually switched to 6mg Requip XL which was a little better. I've had the same augmentation issues. I'm 48 now. I am seeing a movement specialist neurologist who is weaning me off the Requip. I'm up to 1500mg of Gabapentin, 75mg of Tramadol and down to 1mg of Requip. I got a medical marijuana card. Oddly enough, it seems to help while the THC is active, but when it wears off, the RLS comes back with a vengeance and worse than before so I don't try that anymore. My iron is not low. I avoid anything with diphenhydramine. I take no antidepressants with sleep aid off label uses because they aggravate RLS. I don't take any either way. Hot showers seem to help briefly. Soaking in a hot tub does as well briefly. I can go run or walk until I can't anymore, but as soon as I sit down, the RLS pain starts. Magnesium. Potassium. If there is anything not prescription related for treatment or relief, I've tried it.
It's still horrible. I get it during the day. I get it in both legs and both arms. Painful, painful need to move my arms and legs. It's not just a tingling or ache. It's pain, constant pain and agony. I get super hot. I crank the AC down in my house to 65 and I'll be sweating and freezing at the same time. So many nights I can do nothing but pace around my house for hours on end to keep the pain away. I will eat anything and everything I can find or make in a vain attempt to make the pain stop. 7-11 should not sell pizzas at 2:30 AM.
At my worst I was not sleeping at least four nights a week. Now it's two or three. It's affected my job. It's ruined my relationships. It's made me decide to that I wasn't going to have any children because I don't want to pass it on. That's just not fair to anyone. No one I know has it and can possibly understand the agony I'm in. It controls and ruins my life. I'm going to be brutally honest. I have considered what I call the nuclear option. If that's unclear at first, think about it. You'll figure it out. I've fought this for so long but I'm getting tired.
At this point, I don't know what else to do other than I am trying to hold out a small bit of hope that my neurologist will make something work. This going down to 1mg of Requip has been super hard. Any suggestions considering what I've listed and tried so far?