Has anyone else had RLS all their lives, or a very long time? What coping mechanisms have you learnt?

I've had RLS my entire life and was probably born with the condition as I certainly had it as a baby. However, I only realised that it was RLS a few years ago, and so have suffered undiagnosed for over 40 years. It's such a relief to know that I wasn't crazy and those "feelings" in my legs were caused by something outside of my control. Thankfully as I've got older I'm not plagued by it as often as I was throughout my childhood and I have various techniques I've had to learn to deal with the sensations, including thumping my thighs at times! Must admit, being a sufferer of RLS for 50 years now I could have told the doctors it was stress-related!! Shame no-one's doing any research into RLS as I feel that my experiences could really help - leastways for my version of RLS anyway. Hope to hear from you and finally start talking to people who know what I've been going through all my life. Thanks.

16 Replies

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  • Most people have inherited RLS, it can run in families. They, the experts say its connected to our dopamine in our brains, or lack of it in some way. or we dont seem to able to make enough of it... No one has the real answer yet.

    But research is going on into the condtion, many countries have a research programme trying to fiqure out exactly why we get RLS and the cause of it.

    I used to use coping technics without any meds for while, until it got so bad i had to resort to medications, most of us do, or otherwise we would have RLS 24/7.

    I still use coping methods which work for me, but sometimes nothing works no matter what you try to do...

    Everyone tries their own way to find some way to get relief.

    Stress can for some make the sypmtoms worse, as does other things, certain medications, OTC meds. caffeine, and at the moment with the heat, lots of people find it makes the symptoms worse...

    It is a very complicated condition which seems to effects people either mildly or full blown. It also seems to get worse with age, also people have found theirs has gone into remission, sometimes, for a few years, then, woosh, it comes back...

    I wish they would find the answer while i am still alive, then i wouldnt have to walk up and down the kitchen sometimes, when even my meds, fail. I would love to sleep without the sensations and my flipping legs jumping and stopping me from sleeping, and get a peaceful nights sleep, waking in the morning feeling refreshed and ready for a full days events...

  • Hi Elisse

    Thanks for your reply. Yes, I've read about the dopamine theory and know that when I've been on anti-depressants I've not suffered from RLS. However I believe there's conflicting opinion on this, in the sense of "which came first, the chicken or the egg", ie does the lack of dopamine cause the RLS, or does the RLS and the related problems it causes a person then cause the lower dopamine levels.

    I can only speak for myself, but I know stress is the greatest trigger factor for me. Having had it since I was born I know it's not caffeine or alcohol, especially bearing in mind that I now suffer from it less than I did as a child.

    The thing that's struck me from reading lots of the threads on this site is how differently RLS strikes people. I feel I've been let off quite lightly, considering. I go through periods of it being a problem, which these days seem to be related to my monthly cycle, ie PMT. Then again, I rarely seem to feel fully invigourated after a night's sleep, no matter how long I do sleep, so maybe something's going on while I'm asleep?

    Anyway, really great hearing and learning from you.

  • Hi, i just noticed your comment on, no matter how long i do sleep i dont feel fully invigourated. Do you know whether you kick while you are asleep..? If you have a husband or partner they would be able to tell you.

    Kicking while you are asleep is called PLMD, periodic limb movement disorder. You dont know you are doing it cause it doesnt usually wake you up, like RLS does. But it can make you feel as if you havent slept at all. PLMD can be diagnosed by a sleep study, unlike RLS which cant. Some people have both conditions, RLS and PLMD..

  • Hi Elisse

    My husband doesn't know if I do, but bless him he's dead to the world when asleep. However, I remember my grandmother saying I was "restless" or "fidgety" or something like that, on the odd occasion we shared the same bed at their house when I was a child.

    Never been offered a sleep study, only anti-d's. If I was in pain like some of the other people on here, then I'd do what it takes, but comparatively I have it lightly. Also, conversely to the disorder, mine is much improved from childhood when it affected me every day, during the day and night. Now it's probably a few nights a month, so can't really complain.

  • I know the feelings. I was on Miripex for years but I always felt druged. I just felt that it wasent helping me,i finally got off of it, but it was awful to go thru with drawls . I take gabapentin 400 mg at night , it helps till 3 am then I have to take 100 more mg. I'm so tired of sold I get at best 3 hrs sleep. I feel like Dr's. Don't beleve me. I walk the floor most nights. I never feel refreshed. I have had all of the blood tests and they are all normal. I'm wondering if it has to do with menopause I am 57.

  • Hi mumofsam

    Like you I now know I was born with it and it went undiagnosed until 5 years ago, I am now 53. So not realising it was a condition as such I never knowingly developed any coping strategies. Maybe I used distraction?

    However as RLS becomes worse and mine has developed all over my body and become painful, simple distraction cannot be relied on so I resort to pills and potions I'm afraid. They are the only method that guarantees at least some relief.

    Sorry I am no help to you.........

    Kindest

    Bob M

  • Hi Bob

    Thanks for your reply. You obviously have RLS far worse than me. I never knew it could be as you describe, and I feel silly that I even moan about mine compared to what you've been going through!

    No, simple distraction isn't the answer and I don't blame you for going to pills and potions - I would too in your place. As a baby I instinctively came up with a form of relief, which I'm not going to go into here but, having googled about RLS recently it seems that opinion is finally catching up with what I already know and have proved for myself.

    Oh, and please don't apologise for not being any help. Just talking to other RLS sufferers after 48 odd years of thinking there was something wrong with me is the best thing ever, so thank you.

  • HI Please dont downplay your RLS struggles, they are all our own personal hell!!

    Well you are aware I hope that there is a very very personal coping method? Message me on this if you want.

    You are correct talking other RLS folk is a great help :)

    Kindest

    Bob M

  • Hi Bob

    I think I know what you are referring to, and in fact when I googled RLS and found this website there was reference to having an orgasm giving relief from RLS. That surprised me 'cos I thought I was the only one who knew that there was such an element to the syndrome, but then it's not something that people generally feel comfortable talking about. I think this again points to stress, and an orgasm is about the best relief of stress there is. Hope I've not spoken too directly and broken any rules?

    Cheers.

  • Dear Mumofsam

    That's what I was referring to and I dont think you have broken any rules. I only offered a private message as people can find this subject difficult, you are a confident adult and the subject obviously doesn't phase you and I hope no one reading our posts reports us causing a reprimand. If that happened I would leave the site.

    Some RLS sufferers may not know that masturbation / making love can provide some temporary relief from the symptoms of RLS and they should as it may get them some sleep!!

    Thank you for bringing this sensitive subject onto a post, it needed a female I think as if a male had said it to a woman, it may have been taken in the wrong way.....do you follow me on this?

    Anyway, please keep posting

    Kindest

    Bob M

  • It has been known for a while that sex is supposed to give relief for RLS. I know it can be a sensitive subject for some to discuss. But no more than people saying they have used weed to get relief. Another subject some would notlike to admit or discuss.

  • HI, you said that it's "a shame no one is doing any research on RLS". There are clinical trials and studies going on all over the wold. Not enough, but there are more and more. rls.org has a page that lists clinical trials. Small warning-some of the links there are outdated. there is a "new" med coming out in the US on July 1st, the unrefrigerated version of the Neupro patch. Until we find the one common denominator, we will not be finding a cure or a cause, but we can cope rlsrebel.com (lots of coping techniques, no meds) and get as much support as possible. We ma have friends and family that are sympathetic to our situations, but unless a person has experienced a severe case of RLS, they have no idea what it feels like.

    And, you are right, no matter what we do on some days, the RLS has a mind of it's own, and it will do with us what it will when it feels like it. I like progressive muscle relaxation, plus meditation, plus my meds. Would not survive without them. My RLS started when I was 14 after I broke my back, so have had RLS for 42 yrs.

  • Hi Nightdancer,

    Thanks for your reply. I get the feeling you're in the US rather than the UK and maybe there's more going on there? I contacted a sleep disorder website here in the UK about a couple of years ago and asked them if they were doing any new research and the answer was no. Maybe when this site, where I think these boards were only set up recently, gets enough attention then people might look at the condition again and actually speak to those of us who've suffered from it for so long we probably know more than they do! It's just so frustrating to read the little that's out there and think "yes, I know that and I know a lot more, come talk to me as I have 50 years experience of this".

    It's really interesting hearing from someone such as yourself who has experienced RLS since having a bad accident. As I've said in one of my replies above, I was unaware of the wide scope of this syndrome and how it affects so many different people in so many different ways.

    Unfortunately I really don't believe there is the "one common denominator" and to be honest I'm starting to suspect that, rather than a "spectrum disorder" (hope that's the right phrase) that this is numerous disorders that are being put into the same basket when they are perhaps not the same at all. Rather like people saying Parkinsons is the same as MS, or something. They both have neurological routes but very different presentations. Or, of course, I'm going off the wrong track as I'm no expert!

  • This support group was recently contacted by the BBC, who are going to do a programme on sleep disorders and are including RLS. Some of us put our names forward for that programme, i know that i wasnt selected, but that programme will be shown at primetime tv time. and we are all very excited that we will be getting such coverage on this condition, it will be really really good for awareness for RLS. We are waiting to find out when that programme will be shown. Those who have been selected will be able to tell it how it is for them. We hope that will let doctors and hopefully researchers have a real insight on how people have to cope or not cope with their RLS.

  • I saw the info about the BBC programme and was not brave enough to volunteer. I have had RSL for only a few years and take ropinorole which seems to work very well for me at present, thankfully. It's very much harder for others who post message,s and my heart goes out to them for their courage.

    Would be very interested to watch the programme. Will the date and time be published on your site?

  • Yes, the Chair will inform us when he knows....and will be put on here.

    I am glad the ropinerole works well for you Yes, many suffer trying to find a doctor who will understand and help them, or have a problem with the medications that they do take...

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