Hi there from Australia

[ooslumbird]

I have just found this forum and have appreciated all the familiar stories I see here.

I have had this thing for 40 years. It has always been hard to live with, especially in a job where I worked long days in the management field and often found myself dropping off at meetings due to lack of sleep, although it did come and go.

Lately it's getting worse. Sometimes during the day but nights are torture. As a legacy of a brush with prostate cancer I get up at least three times per night to go to the mens. Everything is fine till I jump back into the cot. Bingo! Off the legs go. So it's up walking the floor for twenty or thirty minutes each time. I have a sleeping pill(temazipam)which I only take one night a week anyway for safety reasons in the hope of getting one night's sleep but you still wake for the toilet so off it goes again. And you have nights where it just doesn't want to go anywhere except your leg.

Air travel is out of the question, staying overnight anywhere ditto, television at night is spent walking the floor mostly.

It's interesting reading other people's experiences, and what is striking about RLS is that it's hard to find two people alike. There are so many differences.

I will get it in either leg, but never both at the same time. I also have had a few experiences of it going from one leg to the other. You can feel it happening. Of course you have to find out which leg to lie on in bed.

I get so frustrated at doctors who straight away tell you it's a fitness thing. They have no bloody idea. I have been to so many specialists including a few cranks like the Chinese guy who had me eating muddy roots. I'd like to try some of the miraculous cures advertised online but the prices are too much for something that probably won't work anyway.

Thanks for the opportunity to chat with you about what RLS means to me. I'm not sure if there's a private message facility here but if there is please contact me if you'd like to. Otherwise a reply here would be nice.

Cheers

Ron

[ViewsAskew]

Hi Ron,

So sorry you had to find us...but I do hope you find some solace here. And, maybe even some solutions if that's what you are looking for.

I'll second most of what you said - mine is also more often in one leg than the other, but it moves. When it's particularly nasty it's in both at the same time; sometime akin to torture if you ask me! Arms are nasty, too, but I am lucky and it backed out of my arms when the augmentation stopped.

Well, I need to try to toddle off to sleep...I think it's going to be a good night tonight . Might as well be positive!

Welcome and I'm sure I'll see you around posting more often.

[moonlight]

Hi Ron

Welcome....sorry to hear your'e RLS is so bad.I get it mostly in both legs but sometimes in one.I've has it deffinately 23yrs, but I think a lot longer!

I also have it in my back and arms , though fortunately not all the time,
have other conditions which seem to make it worse...

I spend a lot of time "moving" around the house in the wee small hours as I tend to kick my hubby in bed.

A time back when I found this site the first thing I had checked out was my ferritin level, which was very low, have been on iron for seven months and found it helps .

I take codeine for my RLS as it is pain I feel all the time, I have to keep it to a minimum so that my body doesn't get used to it as it seems to be the only thing that works for me.

Hope you get some relief

huggles
moonlight xx

[SquirmingSusan]

Hi Ron.

Welcome to the forum. I can't believe that a doctor would tell you that it's a "fitness thing."!? What the bleep? I've heard many ignorant things come out of the mouth of physicians, but not that one. Overall fitness is a good thing, but it doesn't have anything to do with RLS, which is a neurological movement disorder related to dopamine in the brain and/or spinal cord.

Be sure and check out the "New to RLS" section of the message board. There is a lot of good information there, and you can print some off some of it and take it to your doctor. If the doctor doesn't wish to be educated, then it's time for a new doctor.

RLS sucks and can make life miserable. It can take a while to find treatment that works, but it can be done. Most of us here have managed to regain some quality of life by fighting for appropriate treatment. You can get there too.

[Hos]

Welcome to the Board. Like Susan said, sometimes you have to (tactfully) fight for your own health care since some dr's are more educated then others.

What are you currently taking to treat the RLS? Hope you can find a doctor who knows how to treat RLS or will read up about it for you.

You'll find this in the section Ann mentioned, it's the RLS algorithm which is just a fancy way of saying that this is step by step the meds the experts in the field recommend to treat RLS with. Keep in touch.

[lyndarae]

G"Day Mate........Welcome post anytime we have aussie mates that have been part of our family for along time. Rls is a tough bird to deal with, but for me just knowing I am not alone and this thing is for real, helps me get through the day and the long nights............WELCOME!! Lyndarae

[psychick]

I will get it in either leg, but never both at the same time. I also have had a few experiences of it going from one leg to the other. You can feel it happening. Of course you have to find out which leg to lie on in bed.

This is the most annoying thing...I find that lying on my side (on the leg that's spasming) and putting a pillow between my knees helps increase the pressure (decreasing the spasms) without hurting my knees (mine are somewhat knobby ).

Plus, in terms of exercise, anything more than moderate exercise actually exacerbates the RLS/PLM's. I struggle with that alot b/c I play a strenuous sport that I'm unwilling to give up even though I know that it's making my symptoms worse.

[ooslumbird]

"Plus, in terms of exercise, anything more than moderate exercise actually exacerbates the RLS/PLM's. "

That's interesting. I didn't know that.

[ViewsAskew]

A study was done last year that actually showed the people with mild to moderate RLS benefitted from regular exercise. So, no question that exercise can help.

But, that said, many of us find it seems to be thus:

Too little exercise? RLS
Too much exercise? RLS

But, again, it is variable person to person. I also find, that for me, I can build up to a higher level and be mostly OK. For example, if I were to out of the blue go hiking in the mountains, I'd pay...and I'd pay for about two weeks.

But, if I started walking a 1/2 mile, then worked my way up to mountains, I'd be OK. If I haven't done ANY exercise in awhile, even a little bit can make the RLS worse until I get used to it. That takes a week or two.

My last caveat....none of this matters now that the RLS is full blown and I need pretty strong meds to keep it tamed. Either the meds handle any increases from things like exercise, caffeine, or alcohol, or they no longer have much affect because the RLS is already pretty heightened.

Of course...as with everything here...except for the study, most of this is sheerly my experience and other's may be completely different.

[sardsy75]

Hey Mate

How goes it in the deep west? Gladstone, Central Qld here. Nice to see another Aussie in our midst

You will find a mine of information on these boards; just remember to take your meds and go to bed at some stage, coz you can get carried away in some of the more interesting threads

I started a new job last week. Working in a bookshop. Was on my feet for five hours straight on my first day. My RLS did NOT take kindly to that and promptly voiced its horror at such a treatment and confined me to bed for two days straight ... ARGH!!! I threw everything I could think of at it ... extra codeine, madopar rapid, ropinerole, tissue salts, magnesium, valerian ... Gawd it was a stubborn and frustrating attack!

However, I was just well and upright enough to make it to my second shift on Thursday night and ye ol RLS decided it obviously wasn't worth the effort trying to put me into misery and I had a relatively good day yesterday.

Did my third shift today ... another 5 hours on my feet (and on hands and knees digging for books and hauling them out onto the displays) and so far ... so good (knock on wood!) ... tomorrow (saturday) could be a very different story. <Sigh> gotta luv it ... NOT!

Anyhoo, I'm knackered, and my meds have kicked in, so I'm hitting the pillows.

Take care of you!
(((((HUGS)))))

[Sojourner]

Hi O, (no, not ohio!), and welcome. Ditto on the one leg at a time and ditto on docs who think it's a fitness thing. Again, you did not mention if you were on any meds other than the sleeping pill. But, many can be effective, if that is what you choose. Maybe the air trips are not out of reach.

Go Greg Norman!!!!


Best wishes,

M.

[jumpy]

M, who's Greg Norman?? Pat

[SquirmingSusan]

That's what I want to know, Pat.

Are you going to tell us, Mark, er I mean Sojourner?

[sardsy75]

UGH

Greg Norman ... ex-pat Aussie who prefers the glitzy way of life in the US of A.

EX Golfing-great ... now, he just tries to play golf.

Greg Norman divorced his wife last year and since he is so outrageously and disgustingly rich his wife of 20-something years scored a mere 10 million dollar property settlement (he keeps the rest ... he's only worth about oh, lets say around $50 million ...). He has since married Tennis legend Chris Evertt in a multimillion dollar wedding in the Bahamas a few weeks ago.

The newly-weds have plans to start building Chris Evertt Tennis Centres at each of the golf courses Greg has built in the US and overseas. Awww ... aint that sweet ... if you can afford the fees!!!

He is NOT my idea of an Australian Idol ... and you can take that to the bank!

[Sojourner]

Ouch!! You guys are really, really, really, really tough! Ok he didn't win anyway. Too much bad karma I guess. 10 million and not yet 30. Geez, she sure got fleeced!

M.