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Rhythmic Movement Disorder, Can't take it anymore

Hello,

Is there anyone, I mean anyone, out there that has rhythmic movement disorder? I have been violently thrashing my body and head, laterally while asleep or mostly somewhat asleep since I can remember. I am 30 now. It use to consume maybe an hour or two a night but now it is getting drastically worse. I find myself doing it or am told that I, "rock", 4-5 hours a night. Apparently kids grow out of this and the remainder that carry this disorder into their adult lives are autistic or mentally challenged, which I am neither. My doctor prescribed me clonazepam, which does not work and I'm not taking an addictive, benzodiazepine for the rest of my life.
Does anyone relate to my problem and if so what treatments have worked for you? I'm going to go insane!
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Avatar universal
I'll tell you my short story hell....
I am almost 41. Since I was 2-3 I have had the most severe form of this. Never bothered me because I would sleep better when I did it. From what I've been told it started when my parents first started fighting at night and then at 3 they divorced. As I got older I tended to do it more when I was cold at night. My body temp is always 1-2 degrees below 98.6 so at night when sleeping my body temp would drop more. As I got older into highschool I quickly stopped all sports because of  the away games. All my life I always had girls women and even one of my female teachers....all women liked me and/or wanted to lay with me.  I was always shy and moved around and was the new person at school/town/work. EVERY girl/woman I dated always loved me and then it would get to the point at every relationship of sex and spending the night. the next day was them leaving me. I would even tell them my condition before hand, but until they actually saw it, I guess it scared the hell out of them. the internet wasn't around then and I thought I was the only one. I decided to google it a few years ago not knowing it had a name. I was brought to sleep clinics and no one knew what to make I it, even my mom and step mom who were nurses. As it turns out...being from a typical dysfunctional family, since I was young all I wanted was to have my own family, not be divorced -"and to provide for them. I graduated 1.5 years early and started in my career. At 41 I still have no family, and after being in the Bay Area making &50/hour  I found out with a single income I can't buy a house. So I keep moving trying to find where to settle and the curse has left me at about 36 years of age. I've lost friends and girlfriends and even 2 fiancés over this ****. Being 40 and not having a family my employer won't offer me any promotions because I'm looked at as something is wrong with me. I am always the best in any company within my trade and now it's the younger people with new families promoted. It's so bad now that I get 8 months per year of work an that's because I'm one of a handful of people that know how to do certain things in my trade. I am a union electrician, and they only call me in to do the main electrical rooms and generators and batteries for anything critical that must never go down. I have only worked for one company in the union but because I have no family I am the one who sits at home because they wouldn't lay me off. I'm too valuable. Needless to say I know that because of my looks, and what I can do, and how much I make, and what I'm needed for in my trade....I am only wanted for that, and I usually have to train my bosses or they dump it on me if they don't know. I should be working all year and be the boss but I have no family. The only reason I don't have one isn because of this sleep disorder. Any woman I dated loved me and I knew that there's nothing wrong with me. I have excellent credit, no debt, always help others, etc. but I know as soon asi would hear them tell me how "amazing" I was then as soon as we spend the night....they would leave. Now my dad died a few years ago and not only am single, no house, etc. my parents at least my dad, died thinking in a failure in life. I wouldn't wish this **** on anyone. The only thing I now have in my favor is that I will be 41 in July and I still look 30. As soon as I start looking my age then my career will be done because in today's safety culture and with the abusiceuncle idiots in management, I will get less hours. I been in my trade 22 years now.....I hate this condition and it sometimes comes back when its cold during my sleep.
Helpful - 0
Avatar universal
Here's another 'rocker' with her story.  I am 67 years old and have rocked myself to sleep ALL MY LIFE!!!  I can remember back when I was four or five years old sitting upright in my aunt's overstuffed chair and bouncing my head on the back cushion until I went to sleep, too.  
My rocking is mostly done subconsciously. If I think about it, I can control it.  But if my brain gets sidetracked reading or watching tv, it kicks in automatically.  The majority of time I am unaware I am rocking with such fervor and my dear, dear husband of 45 years occasionally will shout my name and startle me,  and then I can stop. We have a very firm bed and usually my rocking doesn't bother him.  But there are times . . .  
I have tried sleep aids, both natural and Rx, pain meds, OTC and Rx, alcohol, food, sex, hot tub, constant movement, exercise or hard physical work to the point of fatigue and nothing stops it. The work and fatigue just makes the fibromyalgia flare up.  I have found no cure for my rocking, but I can control it most of the time by being aware of the movement.
Strangely enough, the rocking is very comforting at times.  I didn't read all of the comments above, so I don't know if anybody addressed the possibility of RMD being heriditary.  I don't know that any of my siblings or parents had this quirk, but about four years ago I noticed one of my grandsons bouncing his head on the couch while he was watching tv.  He and his twin both rocked when they were real little, especially at bedtime.
I guess it's just mind over matter.  And like Maxine would say: Put on your big girl panties and deal with it!!! lol
Helpful - 0
Avatar universal
Hi everyone,
I am the wife of a lifelong "rocker". I can tell you it isn't easy. I am tired all the time. Sometimes I can actually get to sleep, but a lot of the time I go to our guestroom to sleep. I have tried earplugs, and a different mattress, but nothing helps.
My husband went to a sleep clinic 10 years ago and they basically said to him, "Ya, you rock". Wow thanks Doctors!! If he isn't rocking, he is snoring very loud, and sometimes has sleep apnea (stops breathing for a period)
It scares the hell out of me!
I just stumbled on this site today, and was so surprised to see so many people here with the disorder!! The bigger surprise though is that no doctors have posted any comments... isn't this site supposed to comment, and suggest some help?
And by the way, none of you need to worry or be embarrassed with anyone. When I met and fell in love with my husband it had no affect on loving him or wanting to be with him. To me it was just a quirky thing. We have been married 15 years, and sometimes (I want to throttle him !... :) but mostly it doesn't affect us.

I do hope something can be found to help! Keep posting!
Helpful - 0
Avatar universal
Hi everyone,
I am the wife of a lifelong "rocker". I can tell you it isn't easy. I am tired all the time. Sometimes I can actually get to sleep, but a lot of the time I go to our guestroom to sleep. I have tried earplugs, and a different mattress, but nothing helps.
My husband went to a sleep clinic 10 years ago and they basically said to him, "Ya, you rock". Wow thanks Doctors!! If he isn't rocking, he is snoring very loud, and sometimes has sleep apnea (stops breathing for a period)
It scares the hell out of me!
I just stumbled on this site today, and was so surprised to see so many people here with the disorder!! The bigger surprise though is that no doctors have posted any comments... isn't this site supposed to comment, and suggest some help?
And by the way, none of you need to worry or be embarrassed with anyone. When I met and fell in love with my husband it had no affect on loving him or wanting to be with him. To me it was just a quirky thing. We have been married 15 years, and sometimes (I want to throttle him !... :) but mostly it doesn't affect us.

I do hope something can be found to help! Keep posting!
Helpful - 0
Avatar universal
Hello, Doing some research on RMD for my 2.5yo and came across this post.

I wonder whether you have had any success with the 'hallelujah diet'? My thoughts are around whether or not this condition could have some link to additives, preservatives and the like.

Hoping your still online  :)

Many Thanks
Helpful - 0
Avatar universal
I guess I should start by saying that I don't rock or bounce my head, but.....

I am a 56 year old woman. I have been rocking the bed, or kicking my leg literally all of my life. As a young child, my first memory of my father was how it felt, and sounded, when he would come in my room and beat me through my diaper for "horseying" in my crib. I guess I would move the bed across the floor. (I found this out when I confronted my father about the beatings).

When the horseying stopped, the kicking began. I kick my leg, one or the other, all night long. I remember my mother coming into my room and catching a leg, holding onto it for a minute, then laying it down. Usually the kicking would resume before she got back to bed. (then dad would scream)

I have taken medications off and on in my adult years to no avail...I guess I am just destined to kick. I do find it comforting to know that I am not alone in this.

Thanks for allowing me to vent,
Judy
Helpful - 0
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