I am a 33f who has suffered from RLS since before I can remember.

When I was a few months old I had scarlet fever. My mom tells me that shortly after recovering I started rocking myself to sleep at night in the crib. When I say rocking, I mean getting in the fetal position, knees and forehead on the bed under me, and aggressively rocking from side to side.

Growing up family would roast me about rocking because “it wouldn’t attract a husband.” Staying in a camper with my grandparents every summer was an utter nightmare because my rocking would move the camper and they would get pissed so I was forced to lay still. The same occurred when my dad built a set a bunk beds for my sister and I that happened to squeak; he would come into the room and hold me down until I stopped rocking because it annoyed him.

In middle school I started instinctively kicking my left leg into the air as I rocked to the right. As I got into high school I started driving home at 1-2 AM from friends houses because the anxiety of keeping still was maddening. I began drinking until I blacked out at peoples houses, or chugging NyQuil at a boyfriends house so I could be a “normal” person and stay the night. I flew to Europe and stood in the bathroom on the plane for 8 hours because I couldn’t keep still - just squeezing and mini stretching.

As an adult, RLS has become significantly worse. There are nights when I stand all night, uncontrollably kicking, punching, thrashing. The movements are intense and I am always sore the next day. Often times I will fall asleep standing up and collapse onto the floor, startling me awake. I’ve come close to being seriously injured (slamming into furniture, falling onto hard surfaces in weird positions) as a result of the falls. I have tried gabapentin and experienced akathisia - I was hospitalized and literally shit myself in the hospital bed because I couldn’t stop moving. Often times medical professionals view my physical behavior as erratic or anxious because I’m so emotional when I try to explain what’s going on. I have eliminated caffeine and sugar. I smoke weed regularly. I could stand to be more active!! Perhaps that would help.

I am significantly larger now and I still rock myself to sleep. I am single and expect to be forever because who in the world would want to put up with this? I mean, for a while I thought I could just have a separate bedroom. But, now, when I fall asleep the screaming and thrashing is so loud it keeps everyone around me awake (I’ve lost a friend over this because he didn’t believe me).

Idk I’ve told my doctor that suicide crosses my mind a lot because of how limiting this has become. I don’t have a plan or anything - maybe feeling more like I could just disappear.