This and That RLS

Every self help RLS self help article and book says that If we

have RLS going on, then we need to go to the doctor.

There is a long running list of self help treatments that seem logical

to do like hot baths, gentle stretches, rubbing down the legs...

but we all know that it's not going to hold us in place for longer

than a few minutes after we stop. We get those kinds of suggestions

to do and when we tell the doctor that it's not working then they

look at prescribing one of the dopamine drugs. Most of us end

up going back to the doctor again to state that those medicines

aren't doing the job.

The doctor then thinks that we have to learn some "coping methods"

and thinks that maybe if we talk to a professional, we can work out

some kinks in our lives and we will learn to relax. We can complain

all we want to and the "mental professional" will listen.. maybe go

over the list of things that are natural like baths, exercising, stretching.

Sometimes we run out of things to say because it's all repetitive

so we move onto the drama in our lives - mainly my own attitude

because it suffers after being subjected to a couple hours of

sleep (maybe) per night. Eventually the "mental doc" says to

ask the doctor for a sleep study. Sometimes the doctor comes up

with that idea when you complain that talking to someone professionally

about your problems, rls is not doing Jack Shiieeet. ^_^.

The results come back from the sleep study and you are sent to the

doctor who says rls must be a neuro problem.. let's send you there.

Maybe you will get some narcotics while waiting the month or so until

you actually get in to see the neuro. When that day finally comes,

the Neuro agrees that it is rls... is a part of your life.. and you have to

learn to cope with it. They may suggest that you sleep whenever you

can or tell you to do the best that you can.. and wait for other rls drugs

to be on the market. (I heard that botox is being used in experimental

treatments studies recently) The neuro goes on to say that other people

live with it and that I should join a support group to get ideas on coping.

My General Practitioner says "Oh" and life goes on. I spent a lot

of money over that time by being told the same thing. Now I have

someone looking at the drugs (narcotics) that actually do help..

They are saying that I am reaching a danger zone by using up

my prescribed pain killers too soon... I am using them later in the

afternoon and before I go to bed... that's too much, too often.

I should use them only when it gets really bad...

My mind thinks that it would be nice to sit through a movie, dinner, playing

cards with family and friends so I know that if I take a narcotic, I can

do it.... so I do... and then I am short drugs at the end of the month

which bites as you all know... I have to put too much thought into

when I am going to take the damn things.. along with my dopamine

Not sleeping caused me high blood pressure, some diabetes so I

have those ugly pills to take and some vitamins... a few other little

nasty conditions are over-taking my body due to poor sleep hygiene.

It's been disastrous any way you look at it...I have a lower quality of

life (sorry for being depressive) Guess how my relationships are

going in the family and with friends??? (I'm too self centered on

how to get the legs to stop and wanting to sleep, dealing with pain)

I think that the doctor, the nurse, the mental professional, my family,

co-workers, some friends think that I am either faking it, really messed

up in the head ---especially when I tell them it's feeling like soda pop

in my veins and I have bugs crawling under my skin...

I am no better off today than I was 3 yrs ago.. everyone tells me to do

the best that I can. The muscle relaxers do not work for RLS for me.

Pot doesn't work. Drinking doesn't help, my body is very well nourished,

I am super strict to follow the food pyramid and I eat properly, go out

running in the morning.. or walking.. or water running.

What's next for me? It's not looking grand right now.. I am caught

on a merry go round of self help only.

[nightdancer]

I hate to say it, but probably everyone here could type most of the same things you have, and for more than 3 yrs. HAs there been any talk of possibly, I emphasize possibly, of trying another antidepressant. I know you say it ahs helped you, what you are taking, but if some other antidepressant might help you, you could get your legs under a bit better control. Obviously you are getting the run around, as most of us have. Took me 10 years to find ANY peace, so we all are soldiering on. Muscle relaxers are not supposed to help RLS, so no wonder they do not help you. Most of them will also make RLS worse in most people, not ALL, but most. I wish I could give you different advice, but the SSRI anti-d is not helping your RLS, and we do have to be careful when we are on those meds, whether it is feasible to change your med, or suffer with the RLS. We are all on the same road with you, as far as meds go. We know there is no one med that will help everyone, but we do know some that should probably not be used for people with RLS. It's a busy road! Very hard to treat depression and RLS together, one of the hardest things to do.

[Hidden in reply to nightdancer]

You have me thinking.... I heard you. =)

I felt on my rope's end this morning when I went to

get my blood work done for RA. The woman taking

my blood said that my eyes looked bloodshot.. Asked

if I slept last night. ( Set me off right there)

I gave her the short end story of rls. She told me that my

genes are probably altered since there was a good chance

that my grandparents worked shift work... she said that

my body was just doing as my grandpa and grandma's

body used to do and that was to stay up all night and work

and then sleep in the daytime. She told me to stop fighting

with my body clock and to start working with it. (I bit my

tongue) She said to twist the doctor's arm a little to get

a muscle relaxer to get me ready for bed otherwise. (I

was swearing under my breath at her) In the end, I said

that I would have to try that.. and left in a terrible mood.

That's where my words above came from. I was upset.

I now know that she meant to be helpful - she just doesn't

quite get it what rls is all about.

[thedragon in reply to Hidden]

I understand exactly what you mean Yikes.ive had this since i was about 13 and im now 55, it was not as frequent in the early years but just as powerful . i can safely say Ive tried most things like you, except dopamine stuff. i saw a neurologist when i was 40 and he was straight to the point...there is no treatment.. parkinsons drugs might help ...but there is really nothing. what more could he say. I started my ssri about a year ish ago when i came on here, as you know, needed for loads of reasons. it saved my life at the time but I am now certain its made the rls loads worse. I went to see my doc last week. she is good but again said ...there is nothing, what can i do ...what do you want. id asked for bupropion before many times but she said its not that good for mood. so i suggested venlafaxine which she has given me.ive had to halve my dose of citalopram for the last 7 days and have had none for 3 days, I am due to start the new drug tomorrow, BUT....i feel ok..my mood is lower, but i am coping and my rls is much improved. i still need cocodamol each day and my sleep is still bad, but i dont know what to do. i am scared to fall into that black hole, ive had a few scary days this week and it is overwhelming and hard to tell myself i have the tablets in my bag if i need to start them.

I dont know why i am telling you this really as its not what you were talking about!!!!! but Im thinking and relating to what you are saying x x x

[thedragon]

what the lady said to you does have some sense. we have been conditioned to believe we have to sleep at certain times . if we could just sleep when we needed to , how lovely it would be! impossible with work and children though. i am very lucky in that all my children are now independant and i work mainly afternoons and evenings till midnight. my job is physical and active so keeps the rls at bay. so when it starts in the early hours and keeps me awake all night , i can easily sleep late if i need to. im very very lucky.

[Miggles]

Hi,

The mention of shift work, does strike a chord with me, I used to work nights, on my feet all night then into bed at 6am, straight to sleep no problems, I even offered to work nights all the time but they said no (so did my dragon )but when on day shifts, it was back to hell, in those days I used whiskey, guess I was a bit dumb then. And the job I was in then sort of stopped me using the other remedy mentioned in yikes last para but in desperation I did try it and it eventually worked well when i found the right type, trouble was that it removed my ability to remember anything. A good trade off if I had nothing to do, damn expensive too.

The homeopathic stuff I use now still work well...(for me)....3 months now give them a try what have u got to loose?

[Hidden in reply to Miggles]

Did that one stupid puff thing 2 times recently and agree,

too expensive... I was skating on thin ice around my husband

just about then. He had a tizzy fit -angry about it. You are

right though..it's no good for when you are trying to hold

down a job as I was at that time.

[roseyapple in reply to Hidden]

Oh dear, I can relate to almost everything on this page, I came close to the edge last night, desperate to sit down as I was exhausted, try anything that would give me a bit of relief, I have never resorted to painkillers before but yesterday took 4 co-codamol to no avail, I stopped smoking 3 months ago and found it very hard but went searching for a ciggie at around 2am this morning as my husband still smokes, I didn't find any for which I'm now grateful but would have been back on them in an instant so have decided to go get some electronic ones today.

I used to work nights and found that I was constantly walking around with a piece of paper in my hand trying to look busy as I battled with the jerks and pain so for me nightwork didn't help.

I take 4 Pramipexole (0.25mg) at night and a 4mg Neupro patch but wonder if I should split the Pramipexole as I have been on this for quite a while now and I am having a nightmare at the moment. After 45 years of it I feel so desperate and frustrated, should I stop the Citalopram as I've cut them down slowly from 20mg to 10mg and really don't like taking all this medication and from what I've read antidepressants make rls worse, where do I go from here?.

Over the years I've been on so many different things (trial and error) natural remedies, Vitamins, leg wraps, pulse plate you name it and I think I've given it a try all to no avail.

[Hidden in reply to roseyapple]

i used to smoke, but i stopped about 12 years ago, guess what, that's when my RLS went crazy, go figure i cant as everything i read says smoking makes it worse, now i have the occasional puff when im realy bad, and it help's, calm's my legs down a bit, it's weird,

[Hidden in reply to Hidden]

I never did smoke. I have heard that it calms the nerves down over and over again. It must have

something magical in it. We are talking cigs? haha

I'm just kidding. Glad that something works.

[Hidden in reply to Hidden]

yep, just ciggies

[Hidden]

Yikes!

I'm so sorry for your situation!!!

I've been in a living hell for the last 13 years and I do agree to every word you wrote in this post.

I've tried EVERYTHING , all alternative methods and every drug that the GP suggested, nothing helped.

And I'm in that position that EVERY single drug I've tested, gave bad side effects. The very best for me has been a combination of Fentanyl adhesive, oral morphine and Sifrol (pramipexol), but morphine is not for long term use.

2007 some doctors up in the north of Sweden did a research with intratekal spinal morphine pump on patients with severe RLS/WED. And they found out that it worked incredible well! And they found out that the morphin dosage only needed to be some micrograms and they also found out that there was not any need to higher the dosage during time as most often needed with morphin.

Early 2011 I started to fight to get such a pump. And as I wrote in an other place here, I just got the message that I'll get a pump in october! Today a doctor in another part of Sweden called me, he told me that his first pump patient has had her pump for 14 years now, with the same low dosage of morphine 90 microgram! Still working perfect!

He also told me that it is mysterious why it works for RLS, they do really know so little about this disease, he called it a group of diseases. He has been talking with a lot of doctors who do not believe in their patients, because in all logic this should not work. But it does!

This is a very expensive method, the pump cost more than one hundred Swedish crowns, BUT how much hasn't all those years when I havn't been able to work cost? And all the drugs? And all the suffering? And how to value my life? I'm 59 and do really think that I still have something to give.

I think that it is our human RIGHT to get this very best help.

Maybe this is something for you to talk with you doctors about?

[Tiredparent Restless Leg Syndrome]

Agree with you all. My quality of life is going downhill at the moment and I'm struggling to get it back on track. Think I need to see my GP or a neurologist. Got to do something as sometimes the semi-nocturnal lifestyle and severe sleep deprivation take over my life. So sick of the ridiculous 'boomerang' nights (when I keep getting RLS and get out of bed, go downstairs, try to do something active such as ironing, go back to bed, RLS starts up again so get up yet again), the frustration that my lack of sleep will bugger up what I planned to do the next day but will probably have to carry on regardless and the loneliness and desperation when I'm still awake at 4am and exhausted. I now take the view that although it would be better to sleep in my bed rather than on the settee, at least it is sleep and I should do whatever works. Sometimes wonder if I sleep better there sometimes because either I'm more relaxed when watching TV (rather than being slightly anxious as v conscious of disturbing my sleeping husband as I toss and turn) or because I'm lying slightly propped up on cushions rather than flat in bed apart from the pillows). Very glad of Sky Planner so at least I can watch some decent TV programmes at 3am!

[thedragon in reply to Tiredparent]

I usually end up on the sofa too..slightly propped up and I can push against The ends too

[Hidden]

We all understand Tiredparent. I see you are using the patch and taking another dopamine agonist, so i guess one of them isnt working as it used too, but i am sure you know that already. Yes, sleeping anywhere is better than no sleep.

I hope you get it sorted soon.

[Hidden]

I'm so glad to hear you chime in Tiredparent. -) I am sure

that everyone agrees. =)))

[dstatertot]

I have RLS so bad and it goes out of my chest if I try to hold the kick from coming out. It was arms and legs last night. I could kick a wall down it's so intense No one knows what to do. I'm on Klonopin 2mg at night and that is not working. I'm on night 4 of no sleep. I feel like i'm losing my mind and I have 3 year old to take care of during the day. Has anyone found a med or combination that will help?

[Hidden in reply to dstatertot]

Hi sorry you are having such a rotten time.Have you tried pramipexole or ropinerole? Some people get relief from gabapentin, pregablin or tramadol.Have you seen a neurologist? Lack of sleep night after night is horrendous and makes you feel very low so no wonder you feeling so bad, On a practical note is there no relative or friend who could take care of your daughter for a few hours during the day so maybe you could get a bit of sleep then or a nursery she could go to.? You will get loads of info from this site.Its best if you do your own question or post as it could easily get missed like this.we all understand what you are going through, sending hugs...kimx