Enough is enough. : Hello everyone. I... - Restless Legs Syn...

Restless Legs Syndrome

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Enough is enough.

Benjamin-Moore-42 profile image

Hello everyone. I am so please to finally find something about this syndrome. I have suffered for 20 years with this. Now it's really bad, at night only laid in bed then 30 mins later it's off. One leg, then after sitting up with leg at an angle, pressure on the foot, it finally goes away. But then appears again 30 mins,later either in the same leg or the other one. So the battle continues to get to sleep before the 30 mins is up.

Getting about 4-5 hours sleep on a good night right now. Really suffering at work from this I can tell ya. I have tried my GP but their knowledge is very little. Was given anti depressants to help me sleep and yes they worked however I was feeling very down and tired the next day so in the end they did not help either. So I am at a loss here and really need some advice. I don't know about anyone else but it really gets me down and lack,of a good sleep is just not helping. Any advice would be much appreciated. :(

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Benjamin-Moore-42 profile image
Benjamin-Moore-42
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16 Replies

Hi, you were lucky that the anti-depressant didnt make things worse for you as most of us cant take them as they are well known to send RLS nuts.

There are other med options you can take, and your GP should know what they are, or should have looked it up. rls-uk.org will list what can be used for RLS.

Benjamin-Moore-42 profile image
Benjamin-Moore-42 in reply to

Ye they were supposed to have looked up options but have never got back to neither have I chased them so it's great to see other options. Thank you so much for the reply and info.

The anti-depressants just made lecturing and being exciting very difficult, I was moody and very tired so I now go with little sleep to make sure I get through my day in a good way but it's still no way to live. Thank you again.

Pippins2 profile image
Pippins2

Benjamin many find painkillers very helpful with the urge to move sensations as well as on pain. The painkiller has to be opiate based the weakest is over the counter Co -Codamol although I amount of Codeine is so tiny it probably won't help much but prescription strength from your GP may help. The next one up strength wise is Codeine and then Tramadol. Some find the anticonvulsant meds help eg Gabapentin and Pregablin ( Lyrica ), it is hit and miss with them seem to work really well or not at all so can only try it and see. An alternative is a dopamine agonists Neupro patch although your GP won't be keen on that one as it's expensive. You could also try slow release Ropinerole (any dopamine agonists insist on slow release type, less chance of augmentation ).Good luck let us know how you go

Pipps x

Benjamin-Moore-42 profile image
Benjamin-Moore-42 in reply toPippins2

Hey Pipps, thank you for getting back to me. I guess I am just concerned about the only solution being pill based so trying as many other options as pissible right now. Will need to talk to the GP again though as I am getting so much helpful tips and advice now. I believe me I am learning more about this fro this website than my own GP's which bring me to the the point that we still clearly know very little about this. Thank you again and I will keep you posted. X

valeriedee profile image
valeriedee

I feel for you, same problems 20 yrs. until I found the Relaxis Pad. I now go to sleep easily, sleep all night. I do also take Temazepam at bed time for a sleep disorder, with no side effects. Please go to Relaxis Pad.com for more information.

Benjamin-Moore-42 profile image
Benjamin-Moore-42 in reply tovaleriedee

Thank you for that Valeridee I will check it out. I did see something on here about this and if I'm honest I am trying to find anything other than pill based solution. Thank you and nice to hear it has worked out for you. X

Pippins2 profile image
Pippins2 in reply toBenjamin-Moore-42

Benjamin the Relaxis pad is not yet available in the UK but hopefully it won't be much longer they are working on getting distributors. The results from the States are mixed and it is expensive around £750 to buy. X

valeriedee profile image
valeriedee in reply toBenjamin-Moore-42

Thanx for reply, Pad is expensive but considering my expenditure on stuff that did not work well worth it

Jeanniebeannie profile image
Jeanniebeannie

Hi well I had the worst night last nite in a while and said to my husband who can help me I was so tearful as it went on and on for hours and just thought please god somebody help me and after hours finally fell asleep but again as usual continues next day so be assured I do sympathise with you as I've had it all my miserable life so realy do understand :(

Benjamin-Moore-42 profile image
Benjamin-Moore-42 in reply toJeanniebeannie

Jeaniebeannie I am so sorry to hear you have suffered like that. I am amazed at how many people do and it's amazing that by the sounds of it we know very little about it. I have found no solution to it. Going to try Yoga though and some more exercise as I am worried that the majority of solution seems to be pill based. Or pressure pads? I go to bed expecting a bad night every night which is never going to be a good thing I guess. Hope you get some relief soon. X

Pippins2 profile image
Pippins2 in reply toJeanniebeannie

Jeanniebeannie, so sorry to read this. Can you refresh my me and remind me which meds you take etc? ..Pipps x

Jeanniebeannie profile image
Jeanniebeannie in reply toPippins2

Hi every night pregablin and pramipexole been on this for years now and all of the other tablets that get mentioned . I've had severe Rls all my life and I know how worse it gets if I increase the dose don't see an end to it at all .

Pippins2 profile image
Pippins2 in reply toJeanniebeannie

It could be that the Pramipexole is causing augmentation, in other words the pills themselves are making your RLS worse. It would be a good idea to try and get off the Pramipexole but you will need to use a strong painkiller to help you to do this. Many find Tramadol very good and you could try Targinact which is now licensed in the UK to treat RLS. .Pipps x

Jeanniebeannie profile image
Jeanniebeannie in reply toPippins2

Hi well after years on them I am considering trying to stop the pramipexole but I do not in any way have pain in my legs they are not sore at all but will c what happens but thanks for advice .

Pippins2 profile image
Pippins2 in reply toJeanniebeannie

The painkillers work on the urge to move sensations not just on pain x

Jeanniebeannie profile image
Jeanniebeannie

No amount of excessive or yoga will make a difference as it starts or stops for some unknown reason and yes as far as I would say pills is the only awnser to help control this soz to say .

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