Why me?

Why do I have this feeling to me it's not so nice

I twist and turn my legs go crazy please give me some advise

I've looked on Internet most days but nothing springs to mind

But people like me are searching for something we may find

To help this awful feeling and lead a normal life

One day it will happen and then we'll all rejoice

So please let's help one another in one Big happy voice

23 Replies

  • I twist and kick night after night,

    All my life I knew it wasn't right.

    Dr’s told me it's all in my head

    I knew the truth, I felt it in bed.

    I paced the floors praying for sleep

    A moments relief in the dark and deep.

    Its only restless legs no big deal

    So tell me now, you know how it feels?

    Drugs galore to numb the pain

    Dopamine Agonists driving me insane

    A brief let up, a minutes respite

    Then back to pacing night after night

    Alone in the dark

    Alone in the pain

    I found health unlocked

    Found others the same

    Help and support was given so freely

    The end is here, well maybe nearly

    I search the net for an end to my pain

    And I'll get up tonight, its always the same.

    I wont give up

    I wont be beat

    I’ll pace if I have to

    I’ll forgo the seat.

    I distract with TV, computer and phone

    I'm on health unlocked, I'm never alone.

  • Great words and so true.

  • Jaysus Raffs! It's just what I needed today. I'm feeling like I can't bear this much longer!! But your poem assures me I can, we can. Hugs!

  • Great poems both of you. We can all relate to both, your words tell our woeful story. :)

  • Thanks.

  • great poem. How true. I read a letter that suggested taking potassium. I am taking ropinirole (helps me a lot) but my Pharmacist said there is not enough research and advised me not to take both. I am always looking out for ways to decrease my medication. But what I take works for me. good luck fellow sufferers

  • Stick with what works! ;) The old saying "if it ain't broke don't fix it" definitely applies to treating RLS.

  • There has been little to no research of a condition that afflicts 10% of the worlds population. It is a genetic condition because you'll find as you read more many families have 3 living generations who all have RLS. i am an example.

    My mother had 0 sisters all of whom had RLS. I have 3 brothers all of whom have RLS.

    Most drug addicts and most alcoholics have the genetic trait. Everyone is looking for relief from those madding urges to move so badly if they didn't move they'd go insane.

    The meds we now get were developed for Parkinson's patients and someone stumbled onto the fact they help us enough that we don't blow our brains out.

  • 70% of RLS is genetic or Primary. Secondary RLS comes when someone is taking the wrong kinds of meds, 40% of dialysis patients get RLS, and so on. So, it is not all genetic, but a lot of it is. Mine sure is. My entire family has it down to the 8 yr old nephew, 11 yr old niece, my 2 older nieces, my mother, and my 2 sisters, aunts and uncles. not all meds used for RLS are Parkinson's meds and they do not work for a lot of people, either the side effects are too bad, or they just do not work for a good percentage of us. rlshelp.org lists all the classes meds used for RLS. And, the experts keep lowering the therapeutic dose of the dopamine/Parkinson's meds. because of issues coming up that did not show up or were hidden when the drug companies did their very small studies on those meds. For a lot of us, the Parkinson's meds just are not an option, so am glad they help you. They do help a lot of RLSer 's but also do NOT help just as many if not more.

  • Nightdancer,

    I agree with the conclusion of your post. If you get RLS fairly young and your mom and nine of her sisters had it and your grandmother had it and all your brothers have it, then it must be inherited and inherited means genetic. My mother sat in a straight backed chair moving her feet all over and wringing her hands and lived that way over 50 years. She died about the time I found the dopamine agonist and am able to live a somewhat normal life.

    My intellect has suffered because I take so much ropinirole, and neurontin. If I stopped I am not sure I'd recover my thinking ability, but when I even try to cut down, I don't sleep for days and it is because I cannot stay still long enough to fall asleep.

  • half the time the meds will "get" us, and the other half of the time the sleep deprivation can kill us. Better to get the sleep, or more problems pop up.

  • Windwalker that is strange comment to make, that most drug addicts and most alcoholics have the genetic trait.

  • yes, where did that come from? Like I said 70% of all RLS is primary, not a drug addict or alcoholic in my entire family, so what are you referring to? I think you mean that people will almost try anything to get rid of the RLS symptoms, and some do get into "trouble", so is that what you mean? Most RLSer's I know from my groups certainly are not alcoholics or drug addicts, so I assume you mean that SOME people will try anything and that is certainly true out of sheer desperation. Perhaps you did not word that too clearly. ;)

  • Not sure where it came from only to say I saw in the top corner of the screen " poems" so it made me think why not attempt one for starters. There are so many emotions during a bout of RLS. I leave it to you to start it off you certainly have my authority to save and publish any of mine.

  • I would disagree that addicts have a generic 'addiction' gene - nurture over nature every time, (although some genes say an inability to cope with stress may leave you more susceptible).

    If its 'addicts have RLS gene' I would disagree, I have known hundreds of people with addictions and although some would be 'jittery' about the legs I met few with RLS and certainly not above current prevalence estimates.

  • I like the poems. I have some I wrote, and some from my groups that are going to be a book. Been saving the poems and limericks for years. IT is going to be section in my RLS book. IF anyone would like me to add any of yours, of course I would need permission and credit would be given, of course. just a thought if anyone is interested. I have been collecting notebooks of information for 19 years. ;) And, I think a book written by an actual RLS patient would be helpful. And, I am not trying to sell it, since it is not organized and written in the final form yet. just 19 years of experience with my support groups I own have given me many ancedotes to tell. ;)

  • If you like mine feel free to use it, if you want I'll try a few limericks.

    I'll expect you to sign my copy of the book, now stop reading this and finish writing it!!!!

    Best of luck with it.

  • ok. I love limericks!! I am watching football, but always have 6 things going at once, and I have my collection of poetry and the others. Thanks for the boot in the butt to get me in gear! Title still not decided on, but will have Nightdancer in it. ;)

  • What about:

    "Raff's Excellent Poem With Some of Nightdancers Thrown in for Good Measure or:" How I learned to stop pacing and love the legs.

    Sounds like a winner to me :)

  • Yes get a hurry on, i have been waiting for ever for your poem and limerick book to get finished. :P

  • I know, Elisse. You know me, I am constantly distracted. But, I promise there is major progress being made now. ;)

  • Sorry your poem thread got hijacked, blokie! We should start a new one with poems only. I will begin another one in a few minutes, and maybe others will join in. ;)

  • Thanks Nightdancer, good idea I wait for your poem, good luck.

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