Feeling low: My rls keeps me awake... - Restless Legs Syn...

Restless Legs Syndrome

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Feeling low

annakalia profile image
15 Replies

My rls keeps me awake sometimes night after night others once a week and others nothing at all i wish it was one of those time. ive been awake two nights in a row now and during the day my legs feel like ive run a marathon :0( its not fair rls is messing with my life i have 3 children youngest 1 and oldest 9 and i just have not got the the energy to do things with them and because im tired i get ratty with everyone. I used to take ropinirole but going onto a higher dose as the lower dose stoped working made me physically sick no matter if i did take antisickness they didnt work now im on pramipexole they work but make me really sleepy the next day and in a world of my own i cant live like this i stoped taking the meds. there has to be something out there that can help! Im going back to the docs to see about the patch. Just feel like crying!

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annakalia profile image
annakalia
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15 Replies

Ah so sorry anna, I am sure most of us can understand what you are going through. Its the lack of sleep it is brutal and can lead to depression. Lots of people have reported feeling sick with Ropinerole.What dose of pramipexole are you taking? Some do find the sleepy feeling lasts into the next day with the meds .What about trying three quarters or even half a tablet which may take the edge off your legs but not leave you feeling like a zombie.Or taking it a bit earlier in the evening so it has more chance of wearing off the next day.The Neupro patch works well for many but is likely to make you drowsy too but worth a try.

Just a note of caution anti sickness meds will make rls worse for most of us.

I hear your frustration its not easy for you when you have young children to care for.Take as much help as you can get.

Sorry no magic cures -if only but we are hear to listen and can empathise fully with you. Sending a hug ..pipps x

Kaarina profile image
KaarinaAdministrator

Hi annakalia

I feel for you. Having three children inbetween the ages of one and nine is exhausting and hard work when one gets sleep so I can well understand how difficult it is. If you would like to chat to someone why not give a call to the RLS helpline. It is open tomorrow from 9 am - 11 am. Make that appointment to see the doc too. I hope you have a sympathetic one. You will find the helpline number if you visit the RLS-UK website rls-uk.org/contact/4560971787

Kaarina

cicek profile image
cicek

Poor Annakalia. I think most of us can understand how you are feeling but please remember there are lots of people on here to chat to. At least you will know you are not alone. Small comfort I know. Please speak to your doctor. I too was in a desperate situation and luckily found Requip XL. For the past year I have been only having breakthrough episodes of RLS and I don't have small children to care for. Unfortunately the medicine does the opposite to me and gives me insomnia but it's a small price to pay for not pacing the floor every night. As pp1pn1s says (and her advice is good) there is no magic cure and what helps one person is another's poison. Good luck and keep your chin up. There is some light at the end of the tunnel.

I am so sorry you are suffering. I have done the taking no meds a long time ago when i couldnt find anything i could tolerate. I went 14 months without meds, and the sleep deprivation was horrible. BUT, the difference for me was i am retired and no youngsters to care for but i was still very low and cried alot.

You could try what p1pp1ns has said and reduce the Pramipexole a bit, see it that helps. ALL the meds also make me very sleepy the next day, and i have tried all ways to see if i can work round it. I break my Pramipexole to reduce to dose and try just to take enough to get some sleep without that drugged feeling the next day, which lasts all day. The neupro worked great for me when it first came approved here for RLS. 1mg did make me a bit sleepy the next day but not enough to make me want to sleep in the day. My regime now for me is taking low dose of Tramadol and 1/2-3/4 of a Pramipexole. Dont give up, you need to keep trying the meds to find what suits you. Its all trial and error. x

annakalia profile image
annakalia

Thanks all for your support. I just hope that my rls is calmer tonight dont think i could take another night of it. starting to feel useless and thankgoodness my patner is around to help look after my children and bring up the slack . still finding it hard goign though :0(.feel guilty for not being able to do more with my kids.

in reply to annakalia

Glad your partner is helping out, have you tried painkillers? X

annakalia profile image
annakalia

Yea i have they take awake the aching feeling but no tthe earge to move my leggs and kick out. which is what keeps me awake all night.

in reply to annakalia

Really hope tonight is better for you , its miserable.Have you had your ferratin iron checked? Are you on any other meds that could be aggravating your symptoms? X

Please ask your doctor about the possibility that you could have an underlying cause for the pain as RLS in and of itself would not cause pain, however it can cause poor sleep and thus excess daytime sleepiness. If you experience very vivid dreams and sleep paralysis you might want to look at the possibility of RBSD.

in reply to RLS-RBSD-Narcolepsy

Hi.Sadly some people do have pain as well as the urge to move and unpleasant sensations with their RLS.I get tightnings which when full belt are painful.They are spasms which start in my feet and work up my legs, very uncomfortable at best.Not everyone has the painful variant but some do .Those with PLMD often have aching legs /arms due to the kicking and thrashing around they do in their sleep

Annieapple profile image
Annieapple

My RLS is very painful sometimes. So sorry you are having such a rough time. Mine is dreadful tonight & I am supposed to be travelling early tomorrow .

Oh well going to go walkies again to get some relief!

annakalia profile image
annakalia

Annieapple i hope that u manage to get some sleep before you travel 2morrow. no rls tonight but i have a sore tummy and a low temp think im comming down with the flu or something. booking a doc appointment 2morrow. and yes i gess my legs hurts after the eposodes of my rls as having to move them all the time in 48 hours makes me leg all tight crapming like ive run a marathon!

in reply to annakalia

Glad at least your rls bit better, sorry anout tummy x

beady3 profile image
beady3

Hello and welcome to the rest of us RLS sufferers. I know just how you feel,and the crying it brings you to that,all of us have stories like yours but keep watching this site you will learn a lot ready to go to the docs. I have had so many tabs BUT Tramodol is the one for me now. Keep intouch and good luck beady 3 x

beady3 profile image
beady3

Hello and welcome to the rest of us RLS sufferers. I know just how you feel,and the crying it brings you to that,all of us have stories like yours but keep watching this site you will learn a lot ready to go to the docs. I have had so many tabs BUT Tramodol is the one for me now. Keep intouch and good luck beady 3 x

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