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Restless Leg Syndrome

Janiept

Expert
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5,311
Can I ask if anybody else out there has this condition and if they have found a way to alleviate it.
I know there are lots of worse things people have to deal with, but waking in the night and having to walk around to try and stop the twitching is driving me nuts!
I would be grateful to hear any thoughts.
 
Many thanks for your reply Catherine, unfortunately I have tried all the suggested remedies in the 25 years I have had this and none of them help.
I have been wondering whether any alternative therapies might work and think I might investigate that.
Thanks again.
 
Hello I have had RLS for a few years now and it got to the point where I wished I didn't have legs, not a nice way to think I know. I went to my GP because it was so bad and after blood tests and iron tablets ( which didn't help) he put me on Ropinirole tablets, which worked straight away I take two 1 hour before bed, but also take 1 1/2 late afternoon, because every time I used to sit down my legs would start jerking and the pulling sensation is horrible.
Please go to your GP as there is medication help RSL, so hopefully you wont have to suffer any more. It's more common in females and also called Ekbom Syndrome.

ps I have tried Magnesium, soap at the end of the bed! ! but nothing worked.for me

Good luck and all the best , I do hope you find something that helps,

RRB
 
Many thanks RRB. I have just been and checked out this medication on Patient UK and it looks as if Ropinrole might not be a good ides for me as I take some other medications which lower my blood pressure (not taken for that purpose) and often feel dizzy because of that, but it has to worth checking it out with my GP..............Anything to stop this!
Its was good to see that I am not the only one who has thought about not having legs.
I wanted to put a face in there but they seem to have disappeared.
Thanks again x
 
Yes I have tried that too Carol but it didn't help me i'm afraid. Isn't it strange how different people respond to different treatments. It just goes to prove once again that there's no 'one size fits all' in the realm of healthcare.
Thanks for responding. x
 
The only way I can combat it Janiept is to get up out of bed,
steady myself by holding on to the bedside cabinet while
bending my legs up and down 20-25 times. I'm finding it
harder to do now, but I do manage it. (just. lol)

I've put up with it for years. Sometimes I can tell when it's
going to start off before I go to bed, my legs seem to become
sort of listless so I'll take a couple of paracetamol before bedtime.
It can sometimes help.

All the best to you


weewillie
 
Yes, movement seems to be the only thing that stops it for a little while, but walking up and down the stairs in the middle of the night (especially at this time of year and getting cold) isn't conducive to a restful nights sleep is it Willie.
I, like you, know in advance when it's going to happen. It's as if there's a slowly building tension inside and on the surface of my legs and then......Ping off we go, twitch, twitch.
I'm glad paracetamol gives you relief sometimes, but afraid it doesn't help me.
Thanks for your response x
 
There are about 6 other drugs that can be used for restless leg syndrome. I have same as RRB at moment, only for 3 weeks.

I have just realised though that we ran out of zinc vitamins that I was taking up to a month ago before my RLS returned horribly. So I have just reordered these to seewhether stopping taking them is the reason for my RLS returning....
 
Hi I'm the same as you janiept, nothing helped only the Ropinirole, the first time I took it, before bed, it was the first nights sleep I had in such a long time. Sometimes its plays up, when tired, or hypo and hyper, but just walking about, shaking affected leg or stretching didn't help very much...........so I focused on cleaning out or organizing a cupboard, cleaning the grill or cleaning out/tidying up my handbag did work much better because I wasn't actually thinking about the RSL because i was so focused on the job in hand, so it may work for others.
I noticed you said you take blood pressure tablets, but not for BP, I do exactly the same, I take a low dose of Ramipril.
ps The only reason I knew about a prescription treatment was because when I took my elderly dad to see his GP, she said I looked tired and was I okay ? so I told her about my wonky legs and lack of sleep and she was sent some leaflets on RLS ( which she gave to me) and the benefits of Ropinirole, I was so relieved and happy, I went to see my GP and the rest is history
How's it going ?

RRB
 
It's all very much the same at the moment RRB because the last few days have I have been tied up at the hospital and not had time to think about getting this resolved (other than moaning about it lol). When I mentioned the tablets I take that make my blood pressure drop, I obviously wasn't very clear, as they are a completely different medication and not related to reducing BP, that's just a side effect.
I will definitely need to try and see my GP about this but she's not available this week as she is duty emergency doctor for the week so it will have to wait. I have lived with it for about 20 years now (how the heck have I stood it for so long ) so another week or two won't kill me.
Thanks for asking and your advice x
 
donnellysdogs, I was interested t read that you take zinc supplements and they have helped your RLS. I have taken these supplements for several years and unfortunately they haven't helped the RLS, but they have definitely boosted my immune system, as I have never had a cold since taking them, so that's got to be a good thing.

Thanks for the info and replying x
 


Aaah, I don't know if stopping them has caused my RLS to come back or not. May have nothing to do with it all....i'll only know by taking them again!

From the sounds of it they didn't help you at all... So I'll probably just end up as always not knowing what stops and restarts my pains. My legs aren't actually resltless any more (although they were) just the incredible pains I get, so again slightly different...
 

lol, too true, Janiept, but I don't go up and down the stairs, I swing my legs out of bed, hold on to the
bedside cabinet and bend my legs up and down, rather painful but needs must, as they say.








I truly hope you discover a remedy for yourself sometime soon.



weewillie
 
I found it interesting that just bending your legs helps you Willie, as I have tried variations of that - laying in bed bending legs, sitting on the edge of the bed and bending them but it doesn't seem to help and actually walking and putting proper pressure on them seems to help..............sometimes, and then of course there are the times when you get back into bed and snuggle down thinking you have beaten the pesky twitch and it starts all over again and that's when the kettle goes on and I give up. Sigh!
As someone said - these things are sent to try us and don't they just.
 
I've had restless legs for some time and unless you have suffered from it, it's impossible to know know just how uncomfortable it is. I wouldn't say it was painful juest the continuing sensation that there's something crawling up and down your legs on the inside. Like @Robinredbreast I've often thought that if the doc said the only cure was amputation I'd have taken it. The gp put me on Amyltriptline, I can take from 10mg up to 30mg depending on how bad it is during the evening. I've been taking it a few years now and luckily I can normall manage on 10 mg and only occasionally up it to 20 or 30 mg. Hope you can get it sorted out and get some releif soon.
 
I have just remembered. about 6 weeks ago my wife bought me some boxer type underpants from Tesco ( cheapies ) They kind of brought my restless legs into crazy mode. Those pants have now gone to charity.
On a other thread I blamed the Tides as some individuals like us perhaps are more sensitive to the moon tide thing.. well it is as good as many explanations we are told, as I have had restless legs for as long as I can remember,
 
Chris Lowe, thanks for your reply and thought your description was interesting. I have seen it described that way before but for me it's a bit different............it's a distinct twitch, as if something has put a small (not painful) electrical charge through the inside of my leg which makes it jerk - yes, jerk is a better description than twitch, as it's stronger than that.
I was also interested to read that you take amitriptyline to help, as I have been taking that for something else (20mg) for about 3 weeks and it hasn't made any difference to the RLS (curse my luck )
 
How strange that something you wear should exacerbate your RLS Izzzi, but as you said there are many different explanations thrown around.
Personally, I would favour the moon's influence and from now on I will be keeping a record of when it's at it's worst and what the moon is doing just to see if they're connected.
I study the movement of the stars so am able to plot exactly where it is and what it's doing so it will be an interesting experiment.
Many thanks for a completely different take on things Izzzi.
 
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