Restless Leg Syndrome (RLS)

Marklr said:
I have it constant, Kaz. Even now, I'm shaking my leg as I'm typing. The only time i don't feel it is when I'm moving....and moving is shit when you've had no sleep! haha. Last night was awful...its like i'm climbing the walls. The doctor just tries different meds on me. I have to slowly come off one med to gradually go onto another. I'm coming off Ropinirole and building up the dose of Gabapentin now. Not good.
Are you OK with Valium? You don't want to develop a tolerance to them.
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I have valium in the cupboard if i need it for anxiety , just knowing it is there keeps the anxiety mostly at bay funnily , i was so desperate one night with an attack of rls that i took two in the hope it would settle my legs down , took about an hour but along with the stretching it worked , i spoke to my gp and he said do whatever works , taking one a day before bed wont get me hooked on it , i am a sensible ex nurse who runs everything past my doc

I have a strong family history of rls , my mum had it so very bad , most evenings and long before bed , my legs kick out in my sleep as people and cats have found out lol and enough to wake me up sometimes , it is quite a complex condition

Poor you having it all of the time , it is miserable , i am on pregablin and along with the valium you might discuss those with your doctor if all else fails
 
kaz7 said:
I have valium in the cupboard if i need it for anxiety , just knowing it is there keeps the anxiety mostly at bay funnily , i was so desperate one night with an attack of rls that i took two in the hope it would settle my legs down , took about an hour but along with the stretching it worked , i spoke to my gp and he said do whatever works , taking one a day before bed wont get me hooked on it , i am a sensible ex nurse who runs everything past my doc

I have a strong family history of rls , my mum had it so very bad , most evenings and long before bed , my legs kick out in my sleep as people and cats have found out lol and enough to wake me up sometimes , it is quite a complex condition

Poor you having it all of the time , it is miserable , i am on pregablin and along with the valium you might discuss those with your doctor if all else fails
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Yeah, it's likely I'll be trying many things in the coming years. I've read that there are extensive studies into RLS recently as more people are taking time off work because of it. so hopefully they'll come up with better treatment soon. Electric shock treatment!
I know what you mean about just having the Valium there is enough to keep the anxiety at bay. It's the safety net.
 
Marklr said:
Yeah, it's likely I'll be trying many things in the coming years. I've read that there are extensive studies into RLS recently as more people are taking time off work because of it. so hopefully they'll come up with better treatment soon. Electric shock treatment!
I know what you mean about just having the Valium there is enough to keep the anxiety at bay. It's the safety net.
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Hopefully something will work for you, you will probably stumble on something , wish i could help you more
 
I get it but i would say mildly, and definitely when im stressed.
i find before going to bed stretching my hamstrings as much as possible, for about 10 mins and thighs also helps.
it is horrible and often keeps me awake
 
I've suffered with this for a good few years, Willis Ekbom Disease is it's official name, I did try Ropinrole about 7 or 8 years ago but it fucked with my head and I sacked it off after less than 2 weeks, mainly based on what I'd read read about the side effects, many mentions of people taking it and becoming completely reckless, gambling, sex addiction, suicides, all sorts of potential issues, not for me.

You mention cannabis helps, well until recently I was a very heavy user for the previous 35yrs, I've knocked that on the head also for other reasons but funnily enough I've hardly had any bouts of RLS since, also my job entailed doing about 20k steps a day, also not doing that any more. So who knows what helps, |I thought my job and the weed were keeping it at bay but clearly I was wrong, in my case anyway.

The only thing that seemed to work for me at night was to stretch my legs as wide as possible, in fact my feet were hanging off either side of the bed, a double, obviously this means sleeping alone but it's sometimes the only option when you're booting your Mrs at all times of the night.

It's a really shit thing to have, it feels worse to me when sat in a chair rather than in bed, sometimes there is no option other than to get up and walk around.
 
nw42 said:
I've suffered with this for a good few years, Willis Ekbom Disease is it's official name, I did try Ropinrole about 7 or 8 years ago but it fucked with my head and I sacked it off after less than 2 weeks, mainly based on what I'd read read about the side effects, many mentions of people taking it and becoming completely reckless, gambling, sex addiction, suicides, all sorts of potential issues, not for me.

You mention cannabis helps, well until recently I was a very heavy user for the previous 35yrs, I've knocked that on the head also for other reasons but funnily enough I've hardly had any bouts of RLS since, also my job entailed doing about 20k steps a day, also not doing that any more. So who knows what helps, |I thought my job and the weed were keeping it at bay but clearly I was wrong, in my case anyway.

The only thing that seemed to work for me at night was to stretch my legs as wide as possible, in fact my feet were hanging off either side of the bed, a double, obviously this means sleeping alone but it's sometimes the only option when you're booting your Mrs at all times of the night.

It's a really shit thing to have, it feels worse to me when sat in a chair rather than in bed, sometimes there is no option other than to get up and walk around.
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Did you ever get it as a child? I read that if you have it when you're young, it's likely to be genetic and only gets worse with age. I remember getting it on long car or coach journeys....or, like you say, just sitting on the couch watching tv in the evenings. It's all day now, though...I think the Ropinirole actually made it worse eventually. And yeah...the compulsive behaviour is tiresome too.
 
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Marklr said:
Did you ever get it as a child? I read that if you have it when you're young, it's likely to be genetic and only gets worse with age. I remember getting it on long car or coach journeys....or, like you say, just sitting on the couch watching tv in the evenings. It's all day now, though.
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Not that I recall, probably started about early 40s, 61 now, although I used to drive a black cab in the 80s and can remember a bit of discomfort after I'd been sat in the cab for a full shift, I just put it down to the fact that I was a fat fucker and needed to change jobs.

Just thinking about it, long drives sometimes bring it on, that can be the worst of times because it takes your mind off the road. I'm banned now though until next September, so no need to worry on that score for now.
It is definitely all consuming when it decides to rear it's head, hence the drugs they prescribe, there's no physical connection as far as I know, just takes over your mind. As someone said it can help by reading, or whatever, I do a couple of crosswords on my phone, then I'm so tired I can usually by-pass the RLS and get off to sleep. It wakes me up sometimes but it's more prevalent while I'm awake, although I've kicked out in my sleep many times.
 
It’s shit, sympathies OP. I was on Ropinirole for a good few years but eventually came off it as I got tired of the side effects, worried about the long term effects and also had rebound symptoms.

Nowadys I think I’ve got better at managing it by being mindful of my diet. No caffeine after lunchtime, reduced alcohol or basically be prepared to suffer if I do want a drink, not too much sugary food before bedtime. Also baths with Epsom salts and I believe that foods containing tryptophan before bedtime can help.

I have an apparent ability to store iron so take a supplement as well as magnesium. It’s under control but I struggle with it after a night shift, probably due to the amount of caffeine and sugary food I consume to keep me going.
 
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