So glad Im not the Lone Ranger!

[cc2]

Hi all~
I am so new to this I haven't been to a Dr. yet. I am 47 and have had
this icky leg and ankle thing since around 13 or 14 maybe later. I did'nt
know that anyone else felt this way until 2 days ago I saw a commerial
about it. I thought oh my gosh thats whats wrong. So I went to the web site. And I also went to a website by Jill Gunzul which lead me here.
I was up until 5:am am this morning because I was having a hard time and had to get up. This thing doesn't happen every single night but I have learned over the years certain things make it happen, mostly being extra tired. My symptoms are a icky feeling (can't descibe it) that is concentrated in my ankles, If I stretch my ankles and legs it goes away
for a couple seconds so I have learned to do this until I fall asleep. I talked to my mother this morning - besides you the first person I said anything to about it and found out she suffers from this weird sensation too! I thought it was just some weird thing about me! But her symptoms are different with pain and tingle feelings. JEEZ I have wrote a book Sorry lots of yrs. of not knowing just came pouring out

[Sara]

Hi, CC and welcome--

Sorry you have RLS, but glad that you're here for information and support.

Just wanted to say briefly, I'm 40, have had it at least since my teens, too, and also have not been to a doctor. I have very classic symptoms, there's no question what this is. I don't think I need to see a doctor until I feel my quality of life is so bad I'm willing to try meds. With my experiences with medication side effects, for now I'm just managing without.

Like you, also, my RLS is mostly localized to feet and ankles, and worse when I am over-tired. A relatively consistent bedtime (as much as I can manage) and bedtime rituals (like reading to get my mind off the sensations) have helped me a lot. Seems like the later I stay up, the more likely I am to have trouble getting to sleep, so I try to just be sensible and take as good care of myself as I can.

I heard about RLS by accident when some friends were commiserating about it, and just knowing what it is did help a LOT in making it easier to understand and deal with. When I started getting 24/7 episodes of RLS, I started asking everyone I knew if they had RLS or knew anyone who did. One grandfather, one auntie, one grandmother, my mom, one cousin's kid, our own younger son, one brother-in-law, maybe my husband, and four close friends all suffer at least mild cases. Nice to wink at my brother-in-law over the dinner table when I can see him slipping his sneakers off underneath it when dinner runs long.

Being open and being able to finally "explain" my "nightly foot thing" has also made it easier for husband and teenage sons to understand and not take my early bedtimes personally.

You hang in there. There are nice people here who know what you're going through and how much it can impact your daily life. Take good care.

Sara

[becat]

hi CC and welcome
Just call me TONTO cause your not alone.
Amazing isn't it, after all these years to find that your mother suffers as well. Yes, RLS is a genetic gift for many of us. LOL
I was speaking to a lady the other day and she was amazed that it ran in families, yet no one knew or talked about it. I told her that after a while you assume it's just you and your body is broke somehow....talking about isn't an option for many, it's too hard to explain. Not only that, but in a family as big as mine, everyone symptoms are slightly different. My parents are of a generation that doctors were for emergencies and if you had aches and pains that was apart of life and getting older.
What drove me to look for help was the sleep deprivation and the fact that at 30? (41 now) I couldn't be growing still. So growing pains were out for an answer.
I'm glad you found Jill's website....the RLS Rebel, she is a wonderful lady and has some awesome insight to this disorder.
So glad you've found us. Read and learn, but feel free to jump into any conversation. We learn from one another here.
Hugs to all.........Tonto/Becat

[trevb]

hi c.c,
just to say welcome and wow that sounds like me!! sounds a very similar story.

i found out i had rls 5 weeks ago from an advert in the papers (i live in england). talked to my mum about it a couple of weeks later to find she had rls too and so does my aunt. im 38 and have had it since i was 7 or so... mum took me to the dr who diagnosed growing pains¬!

again like sara and you - i feel like no need for meds as my quality of life is finr at present (and hoping it will remain like that.)

anyway good to have you here, and i know what it feels like to suddenly have a name to what youve held to yourself for years............so feel free to waffle and write as much as you like. its good to connect

[cc2]

Sara, becat, trevb,
Thank you for the Welcome I was afraid someome would say that it wasn't rls and there I would be again with this thing not knowing what it was whew!! trev it is not just nice to connect it is wonderful ! And Sara
as soon as I heard the symptoms I had no question it was what was wrong! I am going to talk to my Dr. but like you don't feel at this time I
am ready for meds. I think I would like to try some other treatments first.
I have noticed certain kinds of medication make my icky ankle foot
thing go crazy Like tylenol if I take it in the evening, all pain meds that I have ever been given. Tonto/becat lol That is so weird that My Mom and I
have both suffered this and never talked about it, Mom told me today that whenI was a little girl I would get up at night crying about my legs. She told me she had it too when she was little her mom use to put warm compresses on her legs. and was told it was growing pains, She did take me to the Dr. He said it was from walking too much or maybe from p.e.
classes. So that was that! Dr. just did'nt know. I have 3 sisters I haven't talked to them yet but now I know and I am comming out so to speak!! and going to talk to my family. I am looking forward to meeting everyone
and finding ways to help this thing. Ok you said it was ok to waffle and
waffle I did

[trevb]

cc
let us know how it all goes! im not too hot on meds but others here are so ill wait for someone else to reply to your meds question. it does seem though that everyone responds SO differently to different things!!
trev

[nathan]

I'm almost certain that it's something in our water supply. It's the damn flouride I tell you! I also 'suffer' from moderate RLS, and despite the joke of a disease that it is, I understand what you guys are dealing with here. It can be very irritating.

[cc2]

I have talked to family and this what I found out~
Mother and 1 sister have said yes to questions about rls.
Father passed away a few years back but he only slept
for short periods at time getting up often during the night
pacing around He may have been a sufferer too?
Also we are all on anti-deppressants And there is
something I was reading on the boards that makes me wonder?
About thyroid- My mother and 2 sisters are being treated for thyroid.
Could this fall under this syndrome. One more thing caffeine, I am so
tired all the time how would I tie my shoes in the morning without
coffee Does anyone else have memory problems? I swear I lose things all the time or I will be driving down the road and think oh crap where am I going? JEEZ!!!!!

[trevb]

hi again...
just for your info- many people find caffeine a cause of aggravated rls and keep off it... i cant do that as i love it too much and my rls isnt too bad to force me to lose my coffee fixes!! lol

thyroid wise here a link for you to check out....

http://www.patient.co.uk/showdoc/27000881/

http://www.jr2.ox.ac.uk/bandolier/booth ... yroid.html

http://www.aaaai.org/aadmc/currentliter ... drome.html

and a posts in the sleepnet forum by an rls sufferer

http://www.sleepnet.com/rls3/messages/633.html

personally i dont know anything about thyroid links but others may?/

warm regards trev