Rhythmic Movement Disorder, Can't take it anymore

[suziecue40]

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!

[dangerdan95]

I'm 17 and I have the same problem its really annoying, I cannot get to sleep unless I move and my legs start aching if I move for too long

[bdrdapper]

You're Welcome. :)

[goCardinals80]

thank you so much for commenting....my son is 8 and has been banging his head on his pillow since he was a infant. The pediatrician diagnosed him with sensory deficit disorder, and told us that he would grow out of it.....he of course has not, and some nights are worse than others lol. It is comforting to know that he is just normal and it is his way of relaxing....again thanks so much :)


                                                                        Andrea

[bdrdapper]

I am 32 years old and my twin brother and I have had RMD since we were babies. I was a valedictorian in high school, graduated from a private university with honors, have a successful career, and am married with a great social life. The worse thing any parent, relative, or friend can do is make fun of the movements or to call it weird or strange. I remember being as young as 4 years old and I was already ashamed of the movements. My brother and I did everything, rocked into the wall, rocked in our sleep, jumped up and down on the bed slamming our faces into the mattress, etc. These movements seem to happen if we were a) tired, b) sleeping, c) excited. It seemed to be our way of meditating or dealing with extreme emotions.

However, our family did not know how to react. We would be made fun of, called weird, mocked (example "Hey you look like Stevie Wonder"), laughed at, etc. Now I must add, my family is very loving and caring, but they did not realize that their efforts to "make light" of the issue was just making us more and more ashamed.

I still to this day have moments of RMD which vary in intensity and I notice that my stress levels or even excitement levels will have a direct effect.

There was a 6 year period which I had thought I had completely done away with RMD, but was informed by a close friend that it happened at night here and there.

My advice. To family, friends, and relatives: dont make the person with RMD feel weird. The friends and family that made me feel the best were ones who talked about it as if it were nothing odd and calmly would ask how I felt about it and if it hurt me or made me feel different to the point of wanting treatment. Be understanding that it is embarrassing and we most likely feel ashamed, dont make it worse by compounding the issue with mocking or making us feel weird. It actually makes the condition worse by doing that. We wont magically be cured because you call it weird, strange, or tell us to stop.

My advice to fellow RMDers: Dont get drastic treatments or medications. Unless your RMD is caused by something that needs medication, if all you have is RMD, dont take addicting possibly harmful drugs. Know that you can live a happy, satisfying life. I do! Would I like to stop rocking at night or stop swaying at random times during the day? Sure. But I wont take any medications. I found that if I get a good routine of sleep and deal with anxieties and stress in a balanced way, I am less likely to rock.

TIP: if you are in a sleeping situation (such as a sleep over with many people), I have found that sleeping on my stomach or sleeping on a memory foam pillow has prevented rocking. How do I know? Close friends tell me and my hair is not extremely messed up in the morning.

Live happy. :)

[sash04]

How interesting read so many stories of RMD. My 7.5yr old son is a "body roller" and quite violently at that.  He has been doing this since he was a baby and used to hit both sides of the cot it was that intense.  He used to see a chiropractor as he would put his neck out and I actually had to tape my son so I could show the chiro (I think he didn't believe me!).  Now he is 7 and I too don't think he is getting any better.  My daughter gets driven insane being in the room next too him as not only does he rock but he sings!!! Loudly too.  Depending on what he has been heard on the radio or tele through the day depends on what he sings.  You would presume soothing songs (Paradise by Coldplay was a favourite for awhile) but lately we have had the Australian National Anthem (we are Australian) and just 2 nights ago Party Rock Anthem - not the most soothing of songs. He does this whether he has had a cruisy day or a busy day and will often start singing again in the early morning. He is loved dearly - is a beautiful boy full of life, is doing wonderful at school, is very popular and in no other way does he seem affected.  I am trying not to worry myself because he seems like a healthy young boy, but I do get concerned about it affecting his teen/adult life.  My family are all supportive.  The cousins are not too fond of sleeping with him though.  We try to be light hearted about it as we don't want to make it a huge issue for him or make it seem like a huge issue - I suppose we are hoping he grows out of it..........fingers, arms, legs and all toes crossed he does. Again, another long story and thank you for listening.  

[sash04]

How interesting read so many stories of RMD. My 7.5yr old son is a "body roller" and quite violently at that.  He has been doing this since he was a baby and used to hit both sides of the cot it was that intense.  He used to see a chiropractor as he would put his neck out and I actually had to tape my son so I could show the chiro (I think he didn't believe me!).  Now he is 7 and I too don't think he is getting any better.  My daughter gets driven insane being in the room next too him as not only does he rock but he sings!!! Loudly too.  Depending on what he has been heard on the radio or tele through the day depends on what he sings.  You would presume soothing songs (Paradise by Coldplay was a favourite for awhile) but lately we have had the Australian National Anthem (we are Australian) and just 2 nights ago Party Rock Anthem - not the most soothing of songs. He does this whether he has had a cruisy day or a busy day and will often start singing again in the early morning. He is loved dearly - is a beautiful boy full of life, is doing wonderful at school, is very popular and in no other way does he seem affected.  I am trying not to worry myself because he seems like a healthy young boy, but I do get concerned about it affecting his teen/adult life.  My family are all supportive.  The cousins are not too fond of sleeping with him though.  We try to be light hearted about it as we don't want to make it a huge issue for him or make it seem like a huge issue - I suppose we are hoping he grows out of it..........fingers, arms, legs and all toes crossed he does. Again, another long story and thank you for listening.