Shall we explore growing pains/other leg issues of youth?

[Sara]

Maybe there'll be something of use in this discussion to help our Jumpyowl, too!

A LOT of people here have mentioned "growing pains" as kids, and that sounds like it may have been an early herald or manifestation of what we've come to know as RLS. I don't know if there's any proven relationship or not, but anyway...

Interestingly, though, we're all pretty vague about what that experience was. I wondered if we thought hard enough (it's almost 30 years for me since my first remembered leg problems of youth, and I know it's longer for some of us ) if we might see patterns in that experience, as we have in some of our later symptoms and sequences. Anyone want to play along?

I was thinking about this the other day, and I don't recall too many specifics about the sensations involved with "growing pains". I DO remember, however, being quite "uncomfortable" at night, and when I talked to my parents about it, they would say, "Oh, it's probably growing pains."

I know for sure I had leg cramps for a period of time, and often in the evening. I know that I had achey legs at night sometimes, too. My brother and I both had sore/achey/"weak"/tired knees for a few years, but I think that would be joint-oriented, not neurological, would you guys agree? I remember we loved to hike, but always dreaded the trip DOWN the mountain on knees already tired from the trip up.

The leg thing I remember the MOST vividly from my childhood (say 10-15), however, was shakiness. I remember asking my brother and parents LOTS of times, "are we having an earthquake" because if I crossed my legs a certain way, the top leg would shake very noticeably-- even though I felt very much "at rest". (I grew up in California, and there were a few big quakes in that period of time. So to me, that seemed like a logical explanation. ) It was a very odd sensation, and it would last for quite a while, IF I didn't change position. If I did, then it seemed to ease a little until I was still again. I think it's likely that this was something other than pre-RLS or RLS, too. Perhaps it was a blood sugar thing, or something of that kind. But it was something that only affected my legs and lasted for quite a number of years periodically.

I'm pretty much "vertically challenged" (at least compared to the rest of my immediate family) so I remember thinking it funny that my legs would bother me so much when I'd done so little "growing".

At any rate, I'd be interested to hear about anyone else's experience with growing pains-- for us, for the survey, and also because I have a couple of kids who seem to have leg discomfort, too, right now. They're just the "right" age. So I could use a refresher course to be a better help to them!

Take care everybody!
Sara

[jan3213]

Hi Sara, it's Jan

You know, I was just thinking about this same thing the other day. I didn't have "growing pains"--however, one of my twin daughters did. BUT, I remember my mother continually saying, "Janet, you have ants in your pants". I remember never being able to sit still. I guess I never really put two and two together until very recently. I did have a lot of charley horses and have always experienced cramps in my feet. I, too, am "vertically challenged". Ha! I, too, vaguely (now that YOU mention it, Sara) remember times when I was not able to get comfortable at night. Sorry, Jumpy, that I didn't recall this when filling out the questionnaire. Sometimes it takes someone else jarring your memory, I think, to recall certain things in your past. But, the "ants in your pants" thing was said to me more often than not. THAT seems very interesting to me, now. I used to think it was because I was "a bad child", but NOW I wonder it if was because I couldn't help it. Hmmmmmmmmm.

Jan

[becat]

Hi Sara, Hi Jan,
I remember my growing pains all too well. Mine were only a night time thing then, late well into my deep sleep. I would wake up with a deep ache in my legs. And I know that I seemed to suffer cramping harder than others when that monthly joy hit. I know the last time I woke up with that degree of discomfort I was 15-18. It was all managable until I was 30.

I remember being told the same type things about "it's nothing", "happens to everyone" "you'll just have to grow out of it". With what I've learned in the past couple of years, my mother and I have wondered if Mine truely weren't from birth. But how could one be sure of that? I'm not of a shorter stature and was sure that my bones were really being pulled to make me the proud 5' 7" inches and shrinking that I am.
When I did finally seek help for my legs, I used the phrase growing pains. However, it started much differently. My uncomfortable knees, down to the ankle, and if gone unchecked spreading up the thigh. However, The monthly joy, brings cramps starting in my right thigh, so go figure.
In talking with my niece this weekend,(filling out a questionaire for Jumpy) we found things very much in common. She too has it from both sides of her family. She told me that she thought her activities in the marching band made it worse, but just thought she'd pushed it to hard those days. She is almost certain to have PLMD as well as RLS, as no one will share the bed with her when we are packed in at my MOM's for the holidays and such. She kicks like a mule. But her doctors (3 so far) just count it off as injury, although there has been none. hmmmm.
My oldest brother and my grandmother have the same form of this that I do. I think my niece is sure to follow us on this path, it's more than movement for us there is substained pain.
Great thread SARA.

[sardsy75]

I most certainly concur ... an excellent thread Sara!!

And you are right ... there is an extreme lack of knowledge about how to treat AND diagnose infant/childhood and even teenage RLS. There seem to be a LOT of children who have been thrown under the ADHD umbrella who may actually be suffering from classic childhood RLS.

If my memory serves me correctly, one of our members who joined a couple of months ago, Jenny who only a teenager, is struggling to find a way to cope with what she is going through. Then there is Grace who's 6 year old son has just been diagnosed.

I have also been contacted by the RLS co-ordinator from SDA (Sleep Disorders Australia) in relation to our research project. I sent her an email detailing our project and on a whim, stuck my phone number at the bottom. She rang me at 8am last Wednesday morning, very excited about the project we are doing, particularly at the fact that we were doing it of our own accord! There is a national SDA meeting in Sydney on October 15th where there will be a number of RLS Specialists speaking. I mentioned to her that I would be particularly interested to hear what they say about the diagnosis and treatment of infant and childhood RLS. She pounced on that comment saying that she had asked that question at a recent meeting she had with a group of specialists, only to be greeted with deadpan faces and silence. So, it's something that really needs to be looked at, particularly if we are going to be able to offer any advice to our members like Grace. She also asked me more about my medical history and was very intrigued. She has been given enough funding to fly one RLS representative from each State to the meeting, but having talked to me (for nearly an hour) she had started to work on a plan to see if she could get me down to the meeting as well. So, I think i've just been volunteered for an Australian RLS committee, which, for someone who likes to stay in the background of projects, is a little daunting, but hey, if I can get out there and help get some infant/childhood RLS researches underway, what the heck, i'm in!!

I've mentioned somewhere in my posts, I think it may have been in a reply to Grace, that I vividly remember my battles with RLS as a child. My mum and dad would take turns sitting on the side of my bed at night, massaging my legs, and often my arms as well, as I lay there kicking and thrashing and crying "their soooo tired, I don't know what to do with them!" Tired was the only way I could describe the feeling. I hated our trips to Brisbane by car ... trying to sit still for 8 hours was a real test of my childhood patience! But I eventually figured out ways to keep myself occupied to try and keep my mind off my legs. Both mum and dad have told me of their own frustration at watching their little girl who should have been happy and playful, but instead was aggressive, frustrated and withdrew into herself for days at time ... all because my legs and arms were "so tired".

I was talking to my mum again yesterday and she said that I was an extremely restless baby and that it would take hours for me to settle down for a sleep as I would constantly be thrashing my arms and legs about.

The more I think about my conversation with Beverley, the more enthusiastic I am about the possibility of becoming a part of the Australian National RLS Committee. As someone who has a family history of it, suffers from it herself, and is faced with the possibility of passing it on to her own children, I don't think I could be a more qualified member LOL. I will keep you posted about the meeting/committee.

[Sara]

Nadia--

What interesting news, and what an honor to be asked to the meeting!!!

Sounds like a horrible time you had as a kid. What you said about "they're so tired and I don't know what to do with them", hit me hard, because I've said that for years now... but I only remember doing it from my late teens and not all the time (though more often recently). As a young child, that must have been so scary and frustrating!

I think it's an interesting point that RLS children MIGHT WELL be labelled as ADHD, etc., mistakenly. Certainly RLS "fidgets" (and worse), to someone who didn't understand them, could be misinterpreted as willfully annoying or "out of control". I have believed for a while that, although I know ADHD exists and is a terrible thing, there have been many "convenience" diagnoses, as well. My sister-in-law, I believe, was one of the early ones. It was 'easier' to medicate her than to parent her. (Not to open a controversial can of worms... just MHO, and related to this thread.)

Your message, too, Nadia, reminded me of something I found out when I was trolling my family for RLS sufferers. My cousin says that she thinks that her daughter (about 8? now) may have RLS. Evidently, evenings are quite rough for her. I will have to ask my cousin more about that.

Oh, and my mother is still deciding if she thinks she has RLS or not. BUT, I thought it was interesting, because she was talking about how her WHOLE LIFE she could never sit still for any period of time-- though she never really thought about WHY...if there was a "sensation" that caused her to want to move or what.

When I'd discussed RLS with her originally, she focussed on the "creepy-crawly" description, rather than on the need to move and walk and such. Half-way through our conversation about this on the phone (after she'd told me definitively that she didn't have any symptoms and we'd gone on to discuss mine), she got really quiet for a minute, and then asked, "what did you say it feels like in your feet?" And she admitted that in about 45 minutes she'd probably changed positions a half-dozen times (quite radically).

Anyway, I had not thought about "overall" restless activity in relation to this before. But that's certainly a dynamic that many of us could trace back to check on. I don't know if I was a restless child or not. I know that my mother thought I was tougher to parent than my brother.

Hmmm... Now I'm really thinking. Thanks to all for your comments on this. So interesting!
Sara

[jan3213]

It's Jan again

Speaking of not being able to settle down at night as a child--I remember being "too tired to sleep". It's interesting as we all begin to post things, how memories come back, isn't it? Maybe I'm just getting old, but I honestly haven't thought about some of this until you all mentioned the same things. I DO remember being "too tired to sleep". That's the only way I can describe the feelings I would have. I would toss and turn, as a child, and could not get comfortable no matter how hard I tried. My mother would say, "Janet, lay still!" I would try, and try, but I couldn't. Finally, I guess I would fall asleep. But, I don't remember having major problems as an adult until I was in my mid 30's. I do know, as I said before, that it was always hard for me to sit still--whether it was in school or in church--anywhere I was supposed to be quiet. I would try to be "good", and I was a good child, but I just could not sit still! I sat in the hall (which was the punishment at that time) more times than I care to mention!! Kind of puts the puzzle pieces together, doesn't it?

Jan