Beginning of rls? funny experiences? annoying expriences?

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Beginning of rls? funny experiences? annoying expriences?

Post by jbj »

Does anyone else remember exactly the first stirrings of rls? Mine started so clearly and quickly that I can't help wondering if something at that time (besides the fact that my grandmother had it) "caused" it to rear it's ugly head.

I was wondering if there is a common thread in when it starts for most people. I was 43 years old. (I am a female). I had finished teaching a difficult year in high school, and the last week of school: BANG! I couldn't sleep. I thought it was the stress of the end of year close out, but it never went away. I have had it for about 12 years now. Now I am retired and it is still an issue. Now I know what it is and find medication pretty helpful, but does something psychological, emotional or hormonal, triggers this?

Anyone have any ideas? I would think there would be a book of people's shared experiences. It would make so many of us not feel alone (especially those without internet). What about funny experiences? annoying ones? (Like the kind people who told me that they have the same thing, and all I need is a warm bath, a glass of warm milk, and glood sleep "hygiene". Or a good (excuse me) "screw" - that's my favorite (see the entry about electric toothbrushes in one of the other topics on the board)).

How about it first stirrings? funny experiences? annoying experiences? anyone? :lol:

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Post by Sojourner »

j, It's always easier to look back and say "well maybe way back then." I certainly first became "aware" of legs sensation and sleep interference in my early 20's. However, looking back, I think I probably have memories dating back to grade school related to not being able to sleep. So, maybe... Mine came on steadily by most pronounced by my late 40's early 50's where it became a daily thing with quality of life and job implications. Chronic insomnia also set in regardless of how well controlled my rls/plmd may be. Anyway, I think that perhaps within the last 5 or 6 years the diagnosis has become a bit "easier" or recognizable so perhaps many of the "doctor" stories are becoming a thing of the past.

Not sure I have any real amusing stories regarding my rls journey. None that seem amusing to me anyway.

Certainly stress can play a part in making rls worse but not sure it's a primary cause--for me anyway. So, I guess there is a psychological/emotional component component. It's just a strange and funny affliction that sometime makes not sense and where anything and everything seems to appear as if it might have some association based on readings here on this board. But, it certainly seems a vicious cycle with respect to rls, sleep deprivation, physical/psychological collateral damage, etc. and the whole cycle starts again. Ugh. Hopefully the future will bode better for us all.

Best wishes,

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Post by Neco »

My RLS started in my early 20's as well. When I first became aware of it I would be laying in bed and notice that my leg would kind of want to start up, very much involuntarily, and I could stop it when I noticed it, but when I chose to let it go and observe it would progress to the point of thrashing.

At the time I had a prescription for Vicodin to help with insomnia, and I believe it may have been the underlying trigger that set me off. On nights when I didn't take it, this weird problem emerged, but as long as I took some it wouldn't surface.

So I my doctor continued to prescribe it but unfortunately this also kick started my addiction to opiates. It's taken many years of struggling with the RLS, and with managing my meds, but now I am on methadone, 15mg a day, and it is relatively under control except for some ocassional gaps in my comfort level.

There has been talk of all kinds of things being triggers for RLS, painkillers, back surgery in particular or a traumatic injury to the back/spinal cord. But no one has any real hard evidence at this point. We do know that in the case of Primary RLS (not caused by other health problems) it is a genetic condition passed on by women to their children, however.

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Post by HeatherB »

I think I have had RLS since early childhood.

I first realized what it was about 5 months ago when I developed PLMD as well and the symptoms of the RLS became very painful.
Last edited by HeatherB on Sun Nov 23, 2008 4:25 pm, edited 1 time in total.

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Post by Polar Bear »

Yes, mine started in my late twenties and I first noticed it when sitting quietly with my toddler lying across my lap as I stroked his arm and let him drift off to sleep. I was sitting still so as not to disturb him and noticed after about 10 minutes that I had these strange symptoms in my legs. It didn't take long, say within a year, before I also had arm symptoms when in bed. That was well before the days of medication. I didn't even know then to get out of bed and move about !!
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RLS Nightmare

Post by sheilag »

Hi! This is my first posting to this board. I have had small fiber sensory neuropathy that started about 22 years ago, when I was 35. Thought I just couldn't find comfortable shoes anymore. It seemed to progress very slowly, since I didn't even attempt to get it diagnosed for about 12 years. We moved to a new city that was very different and unaccepting, so I went on Zoloft to survive for about 2 years. When I went off the zoloft, the neuropathy symptoms had escalated to the point that I could not sleep more than 2-3 hours per night. I finally got the neuropathy diagnosed in 2002 and started on Neurontin - I take 2400 mgs. per day now. Little did I realize that the symptoms also were very similar to RLS. I fought that urge to move even though the Neurontin helped somewhat. I wondered for years whether I had RLS, but assumed otherwise until my husband was prescribed some Requip and Lyrica for his injury-induced neuropathy. He didn't use the Requip sample, so I tried it and it was very effective, even 25 mg. I am now on 2 mgs. per night and try not to miss a dose or I pay dearly for it.

A couple of weeks ago I had not realized my Rx had run out and my pharmact had closed for the weekend. I was up all weekend and wound up with not only restless legs, but restless body. My whole body would jump every time I tried to sit or lie down. I finally woke my husband at 4 am to help me. I had taken extra Klonopin, extra Neurontin, extra amitryptiline, all supposed to help me with RLS, but to no avail. I just needed 2 pills to get through the weekend,so I took my empty pill bottle to an all night pharmacy and asked if they could fill just 2 pills of my Rx from a different pharmacy. Not unless I transferred the Rx there and they needed to talk to my pharmacy to do so, which was closed on Sundays. I looked all over for some homeopathic meds for RLS, my body jumping every few minutes while in the car or sitting down. I waited to call my dr.'s answering service until 7 am, as polite as I am! But the Doc on call refused to prescribe over the phone even though I asked for only 2 pills, one for that day and one for that evening. Nope! They do not do refills for patients on the weekends, period. So I went to the local doc-in-the-box, where a multitude had arrived before me - a 90 minute wait. In a chair. No thanks! Went to another and found a wonderful, understanding dr. who prescribed 2 ropinerole pills for me and I finally found relief after 15 hours of body convulsions. But the past is past and I learned a very important lesson about not getting involved with other stuff without checking to see if I need any refills on my prescriptions! Sorry this was so long and to make a long story short, I guess mine started almost unnoticeably in my early 40's and coincided with the sensory neuropathy. I added diabetes to the mix 4 years ago, so life has been really fun some days! Thanks for letting me ramble and for letting me read all of your postings. It feels a little less isolated when I read about everyone else.

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amitryptiline and rls/sheilag

Post by mackjergens »

Are you aware that amitryptiline is known to make rls alot worse? So many of the older tricylene antidepressants are really bad for rls, actually MOST ALL anitdepressants usually cause rls to become worse. I am sure that some rlser's can take these, but according to the rls info, very few rlsers are able to take this class of med without causing rls to become worse. Ck the info on for meds known to increase rls.

my rls started as a child, remember crying with my legs at a very young age, and dr telling parents it was growing pains. Never had pain, but I supose back then that is how the addressed leg problems in kids. I have primary rls meaning I inherited my rls, as both my mother and her mother had rls. So you could say I was born with rls.

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Post by SquirmingSusan »

I've read that amitryptaline usually makes RLS worse, but it can make it better in some people. And with the newer SSRIs, in about 10% of people they make the RLS worse. There are quite a few of us on this forum who take various SSRIs and SSNRIs without them making the RLS worse, and they can help so much with so many things.

I have a theory that it all depends on how our brain chemistry is whacked out. If we're low on serotonin or norepinephrine, taking meds that boost the levels in the brain of those chemicals won't bother the RLS unless we take too much. But that's just my biology/chemistry major talking. It's just my marginally educated theory. :wink:

Different people respond so differently to medications that it's never worth writing off entire classes of medication for fear of the side effects.

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Post by sardsy75 »

The earliest I can remember having RLS was when I was a kid ... 5 - 8/9 years old ... I'd be in bed crying my eyes out and kicking my legs all about; and my dad would sit for hours rubbing my legs to try and help and i'd say "Dad, my legs are so tired I don't know what to do with them!".

Torture? Yes!

My RLS is hereditary and my mother commented one day when we were talking about RLS that I was the most restless baby she'd ever seen. Guess I started Really early!

It went into a kind of remission for about 15 years then in 2003, when I was 27, BANG, it was back with a horrific vengence 24/7 day in day out ... and i've been fighting it ever since.

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Post by Colsy »

I had mine for 18 months before I was diagnosed. I was convinced it was poor circulation and general poor fitness so I started going to the gym to lose weight. I then progressed to taking up running.

18 months later I am as fit as a fiddle, I have lost 10 KGs and I now run marathons. But I couldn't work out why I was still getting the pains randomly.

So I finally go to the doctor about it and explain the whole history of my mysterious leg pains. He explains to me how it can not be from poor circulation and I have the classic symptoms of RLS.

I find it funny that I misdiagnosed myself and became fit again only to find out it was something else.
I do believe the running has inadvertently helped my RLS though.

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Post by Scarlett46 »

Hello! Just adding my story to the list...

I think that I have had RLS since I was a kid. And through the years, it has manifested in different ways...

As a child, my feet were always moving. Sitting in church, I would cross my legs, and bounce the top foot... then switch back and forth. I would listen to music while trying to sleep, and my toes were always bouncing to the beat as long as I was still awake. Even sitting on the couch, my feet bounced to the beat of whatever was on TV... and still do to this day!

In my teens, I became a runner. I would get terrible leg aches - these seemed to be moreso related to my cycle. I would wake up in the middle of the night screaming with a charlie horse in my calf muscles.

I started calling it "jumpy legs" after having my daughter. Sitting with her in my lap - especially in a car where I'm limited in movement was almost unbearable. And it always got worse when I was tired. I never heard the term "RLS" until several years later, and game show type lights and music went off in my world... "OMG, there's a name for it?!?!?!" But even then, I didn't consider it bad enough to see a doctor about it.

It wasn't until earlier this year... I went to see the doctor about being tired all the time. The daytime sleepiness seemed to start fairly suddenly (although I can't think of any event that coincides), and was getting worse and worse. He wanted to do a sleep study, and gave me the questionnaire and paperwork for it. Although I didn't do the sleep study yet (simply can't afford it!), I got a lot out of the questionnaire, and subsequent internet searches and then joining this board.

No solutions yet... but I'm certainly learning!

Tried a Mirapex sample pack - augmented. And they may say augmentation is not permanent... but I'm still much worse, many months later.

Tried Klonipin - no effect. If anything I was more tired during the day, with no RLS relief.

I'm currently not taking anything (financial, again) for it... just dealing. I run 3 miles every other day, and I usually feel great on the days that I run. But stress at work (and the fact that it's a desk job) really makes the daytime hard to bear.
"After all... Tomorrow is another day!"

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Post by ViewsAskew »

Scarlett, sometimes I wonder if all of us who couldn't have permanently augmented showed up at the Mayo Clinic with our pathetic stories, they'd have to listen! I am sure it's a tiny amount...but we do exist, drat it. It's bad enough having something that no one believed in for years (and often still do not), but now our experiences with treatment aren't believed, either.

Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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