i suffer restless leg syndrome in my ... - Restless Legs Syn...

Restless Legs Syndrome

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i suffer restless leg syndrome in my legs arms back literally every where and it always comes on at around 11 each night help

bigwill007 profile image
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bigwill007
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nightdancer profile image
nightdancer

how long have you had this, and are you taking any meds now, for RLS or not? RLS can go all over and affect any part of your body, really. But, we need a little more info. The "help" category" is pretty big! :) welcome!

nightdancer profile image
nightdancer

rlshelp.org is great web site; go to the treatment page, and maje sure you look at the list of "Drugs and Foods to avoid". did your RLS come on suddenly or gradually? The answer to that will generate the way we answer, also.

bigwill007 profile image
bigwill007

mine came on after i had meningitis few years ago it drives me mad on a night and ave found that strong codein relaxes it but am becoming dependent on them and thats a worrying thought

nightdancer profile image
nightdancer

ok, that helps a lot! :) first of all, this is my opinion, and backed up by studies that have been done, but largely ignored because lots of doctors think RLS-dopamine" right away f they DO know about RLS. I assume you had spinal tap or two. When I was 14, I broke my back. My RLS started then and over the past 42 yrs it has gotten worse, as my pain issues get worse. Do, you have any permanent nerve damage? The inflammation that happens with with meningitis directy affects the cerbrospinal fluid. During sleep studies, people with RLS are shown to have big differences in the brain above a section of nerves called the ganglia, where all the nerves meet in your neck, like te nerve center. anyway, I have always felt that MY own personal RLS started fro 5 different surgeries, and actually having the occipital nerve cut on the back of the left side of my head. So, half of head is numb, and has been for the last 9 yrs. LOL

I have tried every med there is for RLS, literally, except neupro. have you tried other meds for RLS yet? I did everything, and we figured out the right doses f my pain meds, and that is what controls my RLS. Nothing else does it for me, and in the US, it is ok to prescribe certan meds you guys cannot get in the UK. But, you can buy codeine over the counter, and being "dependent" on a drug as opposed to being addicted are two different things. Most meds we take no matter what, cause our bodies to become dependant on them. so, by dependant do you mean that you are having to up your dose? Or you are taking the same dose as always, but it is not working as well?

bigwill007 profile image
bigwill007

thanks for your responce and yes they drained fluid from my spine on two occasions over a two day period as for codein i feel very relxed while i take this drug and i can sleep with ease on a night time yet doctors wont prescribe this on a regular basis which i find frustrating as only 30 mg codein does the trick for me 15mg works slightly and 8mg which is available over counter is useless lol

What about asking your doctor for Tramadol, that is an opiod...Lots of people use it for pain and for RLS, most get good results. Its one i cant take as it makes me violently sick. Worth asking to see if you can get it to try.

Otherwise you would have to take 3 and a 1/2 of the 8mg codeine to get relief, and go from chemist to chemist to buy them, otherwise the chemist would definately think you have an addiction to them...

Only take the pain meds when you have the symptoms such as pain,

legs that won't settle down...the problem starts when we take pain meds

to prevent the problem from showing up...that's when it can spill over

to addiction.

Some get in trouble when they take pain killers to get to sleep faster

and stay asleep. Remember what the pills are for, respect them and

do not take more than prescribed..

I get 5 pain pills a month...I wait until I am ready to jump off a bridge with

the RLS before I take one...Usually by the middle of the 3rd night

without sleep, I start thinking maybe it's time...I will try everything I

can think of before I take it...Funny how those 5 pills control if I

am hopeless or not...last month I had one left at the end of the month.

Karen USA

bigwill007 profile image
bigwill007

hi karen and elisse ave had tremadol before and felt ok on it but am not sure tremadols could be given as a repeat prescription sometimes a get so depressed am a 31 year old lad a really thought this kind of thing happened in much maturer people am always tired in mornings unless ave doped me self up on codein hopefully a real cure can be found soon

Go and see your doctor and ask about the Tramadol. You wont know till you go and see. If Tramadol helped you before then it sounds as if it is the med for your RLS. Tramadol is not like codeine. You can take Tramadol every night for RLS. lots of people do.

A cure is a long way off....so you need to get a medication that will give you your life back. especially as you are still so young....

There are other medications for RLS...the usual ones most doctors try first are.....ropinerole, pramipexole and the Neupro Patch...

Brachalicious profile image
Brachalicious

Hey everyone. I thought I would share some of my strategies since I have severe rls. I have primary rls, which means it from age 7 and there are no other factors causing it. I've been through tons of testing to determine that my kind isn't secondary, which makes you quite hopeless.

I am on 2mg of ropinirole for my legs which makes me feel like I have to vomit everynight ( literally) and I take 1800 mg of gabypentin along with trazadone all which I take soley to ease my rls.

It helps but doesn't stop it for me.. It worked nicely for a few months but then the "worms" came back in my legs and I again was hopeless.

Finally what I found to work is either deep massager on my arms (which helps for a short while, stretching which only helps while your doing it. But most of all ace bandages!! I take ace bandages and I wrap them right around my legs and arms or wherever it's bothering me (besides my neck of course) and that puts a stop to the critters till you take it off. It takes getting used to a bunch of nights waking up with numb limbs that you have to revive but for me it is worth it. I am not saying that this is safe as I have asked doctors and they recommended against cutting off my blood flow saying it can cause permanent nerve damage but I will take this any day over jumping and squirming all day. To be honest I'm not sure I would mind nerve damage lol as long as I can't feel my feet and arms.

Just thought ide share what works for me.

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