Another night of no sleep

Hi, I'm Elaine, call me Lainey! I've had RLS since I was a kid. My mum always told me they were growing pains. I'm still growing then at 46!

I had an operation. 5 weeks ago on my spine, I had a disc compression and exploratory work done. So I do suffer from sciatica as well as the restless legs. Just lately the RLS has got much worse, even my arms are getting it too. There is no way to relieve it. It's 3.34am and I haven't slept yet. It's also hard because I get pins and needles in my toes on top of the RLS.

I try massaging my knees with cream that has arnaca in. Sometimes that works, sometimes not.

No one seems to understand what I.m going through. It's so bad that it wakes me up.tonight I didn't even get to sleep. As soon as I got into bed it starts.

I'm glad this forum is here, I feel desparately alone with this illness. I hope that I meet lots of people.

Love Laine xxxxx

31 Replies

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  • Hi Laine, well it looks like we are both having a bad night, i forgot to take my pills, tonight, finally took it around 1 and im suffering for it, ive had RLS since i was 19, im 63 now, and i agree its awfull,kind of rules your life doesnt it.I have a hot bath if mine doesnt settle down, that helps, but i know people that find cold helps theirs, we are a funny lot with this RLS. Your not alone theres lots of us out here, and i know you will meet some nice people on here, and get some good coping advice, ok im of for that hot bath now,

    Jean :)

  • Hi Jean, thanks for your comment. I think I will try a bath next time, the last couple of nights I've had a little respite. It hasn't been so bad that I couldn't sleep. I think that maybe because I'm so tired! I can't remember when I first got mine, it's as long as I can remember! It's lovely to meet you and I hope your not suffering tonight, Laine :)

  • Hi Laine, I am 34 and have suffered with RLS since I was in my teens , my mum had rls and my gran . My two sisters do not suffer with rls only I inherited it :-( I have had back problems for 10 years now and it has got worse, I noticed as my back got worse my legs did to. I seen a neuro surgeon three weeks ago and I was told I have arthritis in my spine and hips and I have three damaged vertebrae in my lover spine and there was nothing they could do as it would make me worse and damage more of my spine.

    I can not have children due to the medication I am on and believe me I have tried not to take the tablets and I find it can be frustrating and awful thoughts run through my head it is not good!

    Rls is so frustrating and I wish there was a safe cure .

    Take care

    Lv Rish xx

  • GOSH Rish, I am so sorry to hear your story. I am 53 has RLS all my life and have spine issues etc. but at least I had a life without other limitations. Wish I could help......did you read my post on Swiss Ball success?

    Kindest

    Bob

  • Oh Rish, I'm so sorry, my troubles seem so small in comparison to yours! Poor you! How do you cope? Arthritis is an awful thing. I think I've inherited from my Nan, she always told me to hang my legs out of the bed! My mum always said it was growing pains! Still got them at 46! Lovely to meet you Rish. It's great to talk to people that understand. Laine :)

  • I feel so sorry for all us sufferers and keep the hope that one day a cure will be found. I know my daughter has this but I have not put the name to it with her, she is very very active with sport and works herself to utter exhaustion(sorry too tired to spell) so she does sleep. I am going with hubby in three weeks (first available appointment with chosen Doctor) to see GP and insist on Doppler test and feretin test. I think mine could come from poor viens in my legs, botton legs always ice cold. This is my last hope. Have you seen your GP their are meds available and do help. Hope you have a better night tonight and you are by no way alone.

    Lynda??

  • You are are very wise not to put a name on it with your daughter, plenty of time for that.

    Bob

  • I have on several occasions spoken to my GP about it but they don't ever take me seriously. I will speak about it again to them. As Bob says you are wise not giving it a name for your child. As soon as I knew what it was I then thought right there's not hope, all the time I thought it was growing pains I kept thinking well it will go away one day. I use a cream that has arnica in it. It seems to help, not sure if it does or not. Do oh think RLS is all in the mind? My partner says that maybe it is! I say it can't be! Laine :)

  • I have had '....its all in the mind...' stuff and yes they maybe correct. However if they are; my mind is in great pain, not sleeping and is allowing my legs to flick and jerk around!!

    I would wish it on them if it were not so unpleasant.

    Stay strong my dear

    Bob

  • You are living my life or I am living yours!!!

    I have sciatica , RLS to my arms, disc compression. And my Mum told me I had a round bottom when I fidgeted!!

    I take Mirapexin 0.088mg 2 tab 3 times a day and Gabapentin 600mg x2 3 times a day. Without these drugs I am in far worse condition.

    Also read my post on Swiss Ball success

    All the best, my heart goes out to you

    Bob

  • Hello Bob,

    Thank you for my lovely comment! Poor you! Seems we are a right pair then! I'm on week 6 now of my recovery of my disc compression operation, I'm still getting sciatic pain and pins and needles in my toes. My worst nights are when I have RLS and the pins and needles. The quilt can't touch my toes and my legs won't rest! I hate it! It's horrible. Last night I slept pretty well for a change. What I want to know is though, when I nap in the day after a bad night, why is it then that the RLS doesn't bother me half as much! Why are our bodies so complicated! Laine :)

  • HI Laine

    My worry is how do we become part of 'normal' society? I seem to live a semi nocturnal existence, taking more meds than people like, for conditions that few people understand.

    Oh woe is me!!! lol

    Well here is to another sleepless night, my legs are driving me mad right now all the way up to my shoulders.

    I too dont understand the afternoon nap issue....makes no sense does it?

    Do you work?

  • I used to work, but because of my condition I had to give up as Im awake all night. Im a Foster Carer now, full-time. When he's at school I can nap. when hes on holiday, well Ive not got alot of choice, but my partner is very good at letting me nap when he knows Ive had a rough night.

  • Reading all the posts on here makes me feel i shouldn't be posting at all. I have had rls for about 8 years but mildly, my mother has it badly, it wakes her in the night time and walking around is the only way to alleviate it but following a stroke last year she is unable to walk. Its very frustrating. Fortunately laying down helps my rls and I do sleep although the warm weather and wearing warm footwear is a no no for me. If I leave my feet bare in the cold weather they are fine... blue with cold... but that's an improvement. I pray for a cure for all of those suffering.

  • Hi, SusieL, even if your RLS is only mild, posting isnt a problem on here. I hope yours stays as mild and doesnt get worse over the years. Mine is severe, but my father who i inherited it from (altho he didnt know all those years ago what he had) only had it mildly, it did wake him in the night, but i dont remember him walking around in the night, or night after night, i would hear him thumping his legs in the night when it woke him up.

    I hope that you will read something on here that will help your mother, who sounds as if she is definately struggling with it after her stroke. There is nothing worse than not being able to walk those feelings away.

  • Awwww Susie, don't feel bad. We all have in different degrees! Mine can be severe some days and mild the next. Mine are worse in the summer! How awful for your poor mother. Im so sorry. I'm glad that Ive found this site. It's comforting just to know people understand. Laine :)

  • Hey Susie, dont feel bad. Be pleased yours is mild and remains so. I recall when laying down helped and would give anything to be back there!

    So keep reading and posting as you may read something that will help you remain 'mild' and we (who suffer a little more) may read something in your posts that will assist us that we haven't tried to date?

    Welcome to the page, sorry you suffer at all Susie.

    Kindest

    Bob

  • Thank you for your kind and welcoming post Bob. I am now a little concerned that you 'used' to be able to alleviate your rls by laying down... when I compare mine to my mothers I am imagining getting to the point she is at and it's scary. I continue to read up on ways of suppressing the condition but even when ones finds something it takes a while to give it a chance to work... every thing is so slow! I spent a year on tonic water before realising it did no good whatsoever. I seem to be able to make a long list of things that can make it worse but only a few things that will help the symptoms... what a sad state of affairs... I have not spoken to my gp about it yet so I have no idea what her thoughts are on rls....fingers crossed eh? Susie

  • hi lainey, you are not alone, but amongst friends who know exactly what you are going through, there is no deffinative answer to RLS, i find i have to move all the time, so much so that my dr has told me to eat more, i am already far to slim for my height etc, but i am using too much energy moving, my body is putting my through the most exhausting training regime there is lol.. Lainey, i send you much love, and though i dont get on here much, we are all amongst the most understanding friends ever.. blessings for a better nights sleep soon.

    Neil

  • Neil, thank you so so much for your good wishes. I'm the same, I walk around to try to get rid of it. Sometimes I march on the spot! Sounds crazy! One place I dread going to is the pictures, if I get RLS there it's a nightmare! And on long car journeys! My RLS seems to occur when I'm tired, but I don't actually think there's a real pattern. I did have a better night last night, thank you. It's so lovely to sleep! Laine :)

  • Hi Lainey, My rls is also bad when tired although I am told its because the dopemine levels have dropped by the end of the day. Going to the cinema/theatre is something I don't do any more as I wriggle and fidget throughout....Long car journey's can be bad but are made much worse if the driver has the leg heater on. Like you, I can be seen to be stomping around the kitchen on a bad day although I am lucky in that mine is alleviated by laying down in bed and for that I am so grateful when I hear of other peoples suffering. I get annoyed when people not affected dont take rls seriously, I would wish for all those disbelieving gp's to have it, even for a short period of time. Susie

  • Hello Lainey, so sorry you are having such a bad time, i seem to read where alot of people who have back problems and have surgery for it, makes their RLS worse. Taking strong pain killers seems to help with the back pain

    (if you have any) and takes care of the RLS aswell.

    Hope it all improves soon for you..

  • Hi Elisse, Yes having back problems mixed with RLS really isn't nice! I'm on loads of painkillers at the moment but the RLS still fights on! I think my body clock is all over the place now which doesn't help! I've done a lot of walking today, more than I have for ages, I'm only on week 6 of recovery after my back operation. I've already got pins and needles in my toes, so I expect RLS will accompany that when I get I to bed! Not the attitude really is it! Thank you for your good wishes. Laine :)

  • hi Lainey, as for your doctor thinking rls is all in your mind, you need to print of some literature from here and show him/her, or change your doctor, its a definate neurological condition, and they should be treating you for it, not fobbing you of.

    jean

  • Thanks Jean! I will print some stuff off from here. Its great to have such support! IM so fed up with it. I just with I could be like normal people and sleep. I look at my partner snoozing away and it makes me so jealous, I just want to curl up in my duvet and sleep and be comfortable!!!

  • Hi Lainey, yes I have been through the jealous stage, looking at my partner sleeping, sitting reading a book, sitting watching tv, even sitting just having his lunch. I have been jealous, and I told him so. Even when he mentioned (after I had just got home from yet another long, long walk) that he had gone for an afternoon nap while I had been out walking. Oh yes, I have been jealous. And I have cried and cried and cried. Just to do normal things again like I used to do. I have had severe RLS for 3 years now, and that has been 3 years taken completely out of my life. I am now on Rotigotine (Neupro) patches, worn 24/7. I have my life back. I still cannot get used to just being able to sit. Or lie. In peace. After 3 whole years of a non-life, I am as normal as I can be now. And the best thing of all is that my partner and I do things together again. We nearly split 3 times in the last 3 years. We slept separately because he just wouldn't get any sleep if I slept with him. So of course, the 'bond' disappeared. We led separate lives, his was more sedentary, I was ALWAYS moving about. But now, I am relishing that lie in on a weekend with him, I am loving going out to lunch with him, I have just been on holiday with him and the plane journey didn't worry me a bit. Before I would be dreading the whole holiday, from the journey to the airport right to the journey back from the airport. What I'm saying is that it took me 3 years to get on to this medication, 3 years of trial and error. But I got here, and so can you. Of course you realise it's not gonna happen overnight. But it happened to me when I had completely lost all hope. It's so hard, but keep trying and keep us posted. X

  • Awww Helen, what an awful time you went through. I'm no where near as severe as you but at nighttime I've been sleeping in a separate bed too my partner. Can't now though as we have another foster child taking up the spare bed. God knows what I'm gonna do tonight! Sofa I expect! It's so horrible. Like you I dread plane journeys, I'm sure the more I think about it the worse it gets. But I know it's not mind over matter, it's real pain! Horrible horrible pain. It's so good to hear that you are now better, what a relief, I'd give anything to be able to just go to bed and sleep!! Thank u so much for sharing and keep in touch xx

  • HI Elain.

    Your story is very similar to mine! I had spinal surgery three years ago. Up to that point in my life I had suffered Painful RLS in arms,legs and shoulders and had tried most over the counter stuff with no relief.

    After my surgery I was prescibed Tramadole for pain relief and found it totally cured my RLS, it was wonderful!! So I then looked on the web and found that Tramadole could be used as a treatment for RLS. Armed with this information I went to see my GP and she prescribed me Tramadole at a low dose.

    I have been on it since with only slight side effects of insomnia. I would say that if I now stop taking the tramadole I dont suffer from RLS but PLMS instead. I also take a very low level dose of clonazepam at night to help with the insomnia.

    I cannot express that even with the insomnia its such a joy to wake up in the middle of the night and be completely relaxed.

  • Awwwww oh to be completely relaxed! I took Tramadol after my op and I must admit that I didn't have any RLS when I was on it. But I had to come off as Imon Citalopram and that does not get on with Tramadol, I was hallucinating and my body was jerking as I relaxed. So not been on Tramadol since! The next time I go to the Doc to review my meds I'm going to ask for quinine, I think that's what it's called. Apparently that's good for RLS. I'll let u know if I do try it.

  • Hi Iainey :)

    Quinine is prescribed for leg cramps, so you may find it does not help much with the RLS if your gp prescribes it for you....... but if you do not try you will not know, will you?

    Kaarina

  • Hi Lainey. No you are NOT alone! I agree with Diane about the Neupro patch. RLS and the resulting sleeplessness was making me crazy. Although mostly in my legs, sometimes my arms and back were affected. Every single time I tried to relax something was twitching. It had such a negative effect on my entire family (apparently I don't suffer alone here!) Went through the doctor routine with lack of understanding for years. The patch is honestly a miracle for me. I can sit through a movie and church and SLEEP at night & be a passenger in a car. When they pulled it off the US market I cried for days. I have been able to acquire it since, and absolutely cannot live without it. I hope you are able to find relief like I did and enjoy life. GOOD LUCK!

    Cathy

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