Very sorry to hear what you're going through.Rustsmith wrote: ↑Fri Mar 08, 2024 4:24 pmThis forum is open to everyone. Many of us who take medications tried to survive RLS without them and therefore have experience with many of the Non-prescription treatments. A true discussion involves an exchange of information from both sides.Also, you have no idea of the severity of my RLS. I can tell you that it was extreme. I often had to stand up to watch TV. I couldn't hold my wife's hand. Suicide and chopping my legs off were nightly thoughts.
As for me, part of my role as moderator is to provide my input on most of the discussions on all of the forums of the board, not just the ones that relate to my personal interests.
As Frunobulax said, I didn't say that your RLS isn't severe. I just observed that many people who believe their RLS is severe have not been through an IRLSSG rating by their doctor and or do not know their score. My score with medication is usually around 20 (on a scale of 0 to 40), which is classified as moderate. Without medication, my score is 31 or 32 which is classified as the highest level of very severe.
As for me, I would say that you should be happy that you are able to watch TV standing up. I had to give up that and many other of my favorite activities long ago. My legs are continually moving, even as I type this at my standing desk. There have been many nights that I spent the entire night out walking the neighborhood because me legs wouldn't allow me to even sit. And I didn't sleep the next day either because I had to work.
I have had several instances where I had to keep moving for 7 days with zero sleep. I was even thrown into a psychiatric facility for a week by an ignorant ER doctor. I had gone to the ER so that they would call my doctor because I hadn't slept for 3 days (they didn't call my doctor). I couldn't go out to wak that night because it was snowing, here was a strong wind and I couldn't stand the idea of walking around in circles in my living room all night long. The ER doc saw me pacing around the exam room and assumed that I was experiencing opioid withdrawal syndrome without even talking to me. Once I was at the facility, they withheld some of my meds until they saw me pacing around the ward for 10 hrs after I went through a painful withdrawal from my RLS meds that they knew had been prescribed by my doctor who is a medical school professor and sleep medicine researcher. I felt luck to get out of that place alive because their record did show that they had killed patients before the state yanked their business license. That experience has only made my life that much worse, but that is life for someone with a very severe case of RLS. And I feel lucky because I know of cases that are far more severe than mine.
I'm just saying I would feel better if this was a safe haven, free from comments about medication.
I'm not saying restrict anyone, I'm just suggesting that if information about a natural remedy is posted by someone, regardless of how effective someone thinks it may or may not be, just leave a comment. "I have my doubts" or "I tried that and it didn't work for me" or "I tried that and I think it helped a bit."
That's all I'm saying. There's no need to include which drugs you're taking in the response.