Need to moan

Hi everyone I've been a member for a while but have stayed relatively non active which is all about to change because I really feel I need to talk to someone that understands. I have had RLS since I was a child and it has progressed nicely over the years to the point that it now affects my day to day life.

It is particularly severe today already at 15:30 as I have a virus that I picked up from work (I work in rehab units and being enclosed environments you only have to breathe to catch something) and for reasons which are obvious and I'm sure you don't want to hear the Tramadol I take have no chance of working!

I know that I'm in for a real treat tonight especially as I've been sleeping on and off during the day.....I'm really not looking forward to it.

Nobody really understands and I guess I can't blame them when I can't seem to find the right words to describe the symptoms. Has anyone found any way to describe it that makes it not sound like you have hypercondria? Restless leg syndrome isn't necessarily accurate in my case either as I suffer with my arms in equal measure.

I'm really at my whits end with it and think I may very well go crazy if I endure many more nights of pacing up and down the lounge in tears only to be laughed at when I explain to people why I'm so tired. Sorry for the moan but I just feel so alone.....oh that rhymes maybe during my endless waking hours I should become a poet.

Thanks for listening x

42 Replies

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  • Oh you poor thing Angela..I too have paced up and down during the night praying for either relief or death! And I cant put into words the exact symptons either...it's just an awful feeling all round,,I sleep lots on and off during the day also..im up half the night pacing, so i know im in for another bad night...i have severe arthritis, so i use morphine patches but even these dont relieve the RLS pain, to be honest they dont do much for my arthritis either! I just wish someone would tell me the REAL cause of RLS...i have had so many theries from diabetes to neurological damage...but whatever the cause I would'nt wish this on my worst enermy !!

  • Hi maggie126, if only we did know the cause of RLS we could all get cured, but unfortunately no one knows... the experts nor the scientists have worked it out yet.. :(

  • Angela, does the Tramadol usually work for your RLS. or is it just cause you are ill at the moment...wish i could say what to do to help.

    It is hard trying to tell someone what its like to have RLS. i think most of us struggle with explaining....also most of us have different types of sensations in the legs, but the universal symptom that we all share is it keeps us awake and pacing in the night. I also on occassions get it in one arm or my back..that for me is the worse place to get it..

    I guess the best thing to try tonight is hot baths or cool baths, depending on whether your RLS likes hot or cold, stretching can sometimes help. Find a distraction, something to focus on which for some seems to help also, the deep concentration seems to distract the brain from making the legs jump.

    I hope you feel better soon.

  • Thank-you maggie and elisse, maggie do you have any other meds for your arthritis or just the patches? I ask because I am a pharmacy technician and am curious as to what you have tried. I too have felt like I wanted to die when in the middle of extreme suffering and I really don't think people understand the severity of how it can affect your mental health too! Elisse the Tramadol is usually quite effective, I will still get symptoms but not quite as bad and i can usually get 4-5 hours sleep especially if it's a day I'm at work. If its the weekend and I'm relaxing then they don't really work.....it's such a difficult situation because at the weekend I'm so tired after working a full week so try to relax but as you know this isn't easy and if I do get to relax then I get literally no sleep at all! I've recently started a new job too which involves lots of driving and being stuck in traffic which I'm finding really difficult! I was in a 3 hour meeting the other day and it was torture! I've not tried the hot/cold bath thing but I will tonight...my RLS seems to like cold I've used cooling gel and sometimes that helps - I think that's one of the problems sometimes things work and sometimes they don't!

    Thanks both for your words and advice x

  • ,Hi Angela, the eds i have used for my arthritis are, Tramadol, DF118 forte (dihydrocodeine Tartrate) and Transtec (Buprenorphine patch) I started off with the lowest dose patch 35 mc, then 52.5 mc and now the highest dose 70 mc To be honest nothing is working anymore, body has got used to the meds i guess...i also had excessive injections under sedation, but they only worked for a short time. so add my RLS to my arthritis and what u have is a bloody nightmare !

  • Hi Maggie have you tried anti-inflamatories alongside your Buprenorphine for your Arthritis? X

  • Hi Angela, the only anti - inflamatories i can take is asprin, a small dose to help the blood...the various meds i take have an adverse effect so i cant use them..do you think anti - inflammatories would help in RLS?

  • Hi Maggie Sorry I doubt NSAIDs or anti-inflammatories would help RLS, I was just thinking of you suffering with your Arthritis but as you say taking Aspirin means you can't anyway x

  • RLS is a dreadfully lonely illness. The time we have it the worse, is when everyone is asleep, oblivious to our pain, exhaustion and sheer exasperation. Sometimes, after a bad night, I then have to listen to my husband tell me in the morning that he had a bad night because he woke up a couple of times! Aaargh!!!!

    For reasons I don't understand, when I have RLS, I can sometimes fall asleep on the settee with the TV on but not in my own bed. Wondered if it's because I'm propped up or curled up more? I really hate it when my son - age 10 comes down in the morning to find me asleep there with the TV on!

    The silly thing is that I know there are all sorts of things I can do in the night if I have RLS like take a bath or do some exercises, but I'm so shattered I either forget them or I'm just to tired to do them!

  • The times I have looked at my husband lying peacefully sleeping next to me.........and I feel like giving him a good slap just because he can sleep and I can't! I too can sometimes sleep if I go down and lie on the sofa and if I'm watching tele with my husband downstairs and I'm suffering I'll go up to bed on my own. I think for me I'm aware of disturbing him with my constant fidgeting or 'body popping' as he refers to it (!) so I often feel a little calmer if I'm on my own........but then comes the desperate lonliness like I'm the only one in the world that's awake.

  • I tottally relate to this . My partner can get to sleep in 2 mins striaght out just like that and stays asleep nice and peacefull. I cant help it i just get so pent up that hes got the ability to do that. I want to sleep to aleep like that to..... I end up getting up with the tele on tryibg at different moments through the night to sleep on the sofa. Usually unsucessfully then before i know it its morning and i been up all night again!!!!!!

  • Ahahaha...slap him for sleeping. You nailed it by saying that

    because I too want to do the same thing to my husband. lol.

    (jokingly, of course!)

  • We literally feel your pain! I always say RLS has mind of it's own. We can take all the same meds, the same way every day, and sometimes absolutely nothing works on the awful nights. I, too get RLS ina ll 4 limbs-"restless body syndrome" my nick name for it. :o) May I ask what dose of tramadol you are taking, and if you have tried anyting else along with it, to help take the edge off a 3 hr meeting? Other meds ca be taken in conjunction with the Tramadol, or the dose could be upped a bit, so you could take one at work. It does not promote sleep, by the way, so daytime drowsiness for that is not one of the side effects. Look on the question I posted for "How do your describe your RLS?" Lots of responses, and interesting to see how differnt some of the answers are. The easiest thing is to tell people that you have a neurological condition that is a movement disorder that keeps you from sleeping. If the person seems like they will be sympathtic to learning about RLS, or at least hearing about it, then maybe you go into more detail.

    Keep writing. It helps! I have had support groups for 15 yrs, and they literally saved my life.

  • I'm on maximum dose of 400mg of Tramadol. Initially this was prescribed for my neuropathy but it soemtimes does help. I have Clonazepam also for times such as flying, going to the cinema or theatre but although it doesn't make me drowsy anymore because I've been taking it for so long I find that it's harder for me to concentrate so unfortunately I couldn't take this during the working day as I need to be on my game otherwise I'm at risk of making a medication error and potentially killing someone! Unfortunately also in my line of work I am reluctant to experiment with medication (all though I have had to in the past) I'm due to have my third surgery in three years on my leg soon (nerve damage which doesn't help matters) and I'm absolutely dreading the recovery! I couldn't walk for a fortnight so you can imagine how bad my symptoms got :( will definately call on the assistance of Clonazepam for that!!

    Brilliant advice on what to tell people and I'll check out your question.

    Thank-you

  • On the Very bright side of having that surgery, You will experience

    the best night of sleep in a long long time by getting pain medication

    after the surgery.

    I discovered that when I had my knee removed for 10 weeks.

    The only problem now is that I can't have that stuff anymore.

    My knee is back in and I'm doing great in that way.

  • Hi I am sorry you to have this awful RLS it's something I really wish they would find a cure for as it spoils life for us in many different ways! Mine is children I can't have them due to the medication :-( I recently started the neupro patch and thank fully it works I have not had that awful feeling for over a week now!! Some day before its to late I hope they find a cure and I can have a family, it's heart breaking as most my friend have children and a lot are pregnant so it's difficult for me but not many understand how I feel and what I go through! Hope you get a settled night I have had many tortured nights for years and years crying pulling my hair out and eating! Walking back and forth X

    Ps moan when Eva you want we are all here to listen and give the best advice we can remember your not alone we are one big family!

  • Rish, my apologies I thought I had replied to you but I did it on my iPhone and it can't have sent. I am so sorry about your situation..........this is exactly what I mean about people not understanding how serious this condition can be and all the other effects it has on life. I really hope that things will improve for you so you can have children, this is so sad. Sending you lots of love :) x

  • The urge to move those legs is like trying to hold back a big

    sneeze or it's like having to use the toilet and not being able

    to.

    I've told people that if they want to know what it's like, then just

    try not to sneeze or wait longer to use the bathroom. That's the

    physical sensation...

    Then there is the emotional state.. No sleep does not create the

    best version of ourselves, in fact, it can turn us into forgetful,

    whiners who can be cranky, short with others and unable to get

    anything productive done. The body must have sleep to work

    properly.

    It causes some people to go to the street to find muscle relaxers,

    drugs that doctors will not and do not prescribe. We drive half

    asleep, make bad decisions because of sleep deprivation. It's

    harmful to our bodies as a whole in ways that none of us even

    know about.

    There has to be some funding to research more of this and to

    create a treatment plan that is safer than having people in a

    constant daze from lack of sleep.

  • Awwww thank you Rish....it's nice to know th

    ere are fellow sufferers who really understand

  • Simply sending a hug x

  • That is so kind thank-you x

  • neupro patches and Ropinorole are both ok in their own way for RLS ut you should get your GP to send you to a Neurologist as it is to do with low dopamine chemical in the brain and sometimes lack of iron but you do need to be diagnosed so your GP can start you on medication. Tramadol wont help your RLS as it is a pain killer and we have a neurological illness which is mostly heriditary.

  • Hi Eileen my doctor diagnosed me many years ago so I know it's definately RLS. You are right that Tramadol is a pain killer but it has many other indications and opiates are generally effective in treating RLS. Medicines are often prescribed for the advantage of some side effects they produce rather than the indicated condition. I was hoping that mine may be due to lack of iron but sadly no and my dear grandma suffered for RLS too

  • Hi Eileen49, Tramadol will help RLS for many people, yes its a pain killer, but pain killers are used for RLS. Just wish i could take Tramadol, but i cant as it makes me sick...

  • has anyone tried the magnitic leg wraps? I have had RLS since a teen and at 62 it is getting worse and I do also get it in my arms on occasion - but these leg wraps with magnets in have worked for me for about 5 years!!! I have to put them on immediately I get the sensation or aura that it's starting or if I'm in a period of getting it daily wearing them all the time. If i delay putting them or one on and it gets established then it is less effective but all I can say is it works for me:)

    I'm not sure if it's ok to publish their website details but if it is then I will!

  • Twitcher please could you inbox me their website details - I must try these!

  • Hi yes I have the magnetic leg straps they worked for 6 weeks then stopped :-(

  • The only effective mental relief i get reguarding rls is talking to people on here. I was at the edge of insanity i found this site and started recieving really helpful advice and support. It was then i realised knowledge is power!!!!!!! The more i know the better i can help myslef. I had rls for 18 yrs now. And its getting worse. I also have it in my arms and hands and also in my back. Its so easy to feel so alone when you have got rls its such an unreconised illness. Alot of people dont understand. Partners family friends even most doctors. I have had to fight so hard to get my family and partner to understand. Again knowledge i power the more they know the better they can try to understand.i still dont think they really get it. which is why it helps me so much to be able to talk to people who have got it and knows how it feels to be cotemplating sometimes the unthinkable i have been there. And its not a good place. Whenever you feel like you cant take it anymore get on this site!!!!!!!

  • It's so nice to speak to people who understand isn't it!

  • You are right, knowledge is power...the more you can find out and learn about RLS, the more you can try to control it and not let it control you,,,hard i know..as some nights absolutely nothing works even meds.

    I know this website has been put on here before rlshelp.org but it is one of the best, if not the best site to find out about alsorts to do with RLS. Another website i am not sure if its been put on here but might helps some rlsrebel.com

    has lots of info in dealing with RLS.

  • Perhaps we should all meet up one night at least we wouldn't be alone. I too get it in my arms at times. At least we all understand each other.

  • Maybe it should be restless limb syndrome! Then again I don't know where my back would fit into that! It's just awful isn't it. I slept for 40 minutes last night and it never occured to come on here to see if anyone else was up! Good idea jigglylegs.........love the name by the way!

  • Hi Angelastral, some people get all over body RLS,,, eeek, the thought of it, and call it Restless body syndrome....i have only up til now apart from my legs, get it in my back sometimes...

  • Yeah I get it in my legs arms and back :(

  • I just get it in my legs and arms ! My patches are working thank god but because I am use to no sleep I can't seem to sleep and if I do fall asleep its still only for a few hours then I wake up :-( RLS has given me insomnia !!! Can't win !! It it lovely to talk to people who understand so I am so thank full for this site and all you lovely people :-)

  • Hummm awake but not with RLS !!

  • Hi Rish did you manage to get any sleep? Was it insomnia then? Typical no RLS but still no sleep!!

  • Hi I got about 3hrs 20 min sleep so not to bad!

    Yes it looks like RLS has give me insomnia :-( cant win I finally get rest from RLS now I have insomnia ! The neupro patch 24 works brilliant first time since having RLS I have not felt the flicking twitching horrible feeling in nearly two weeks :-) x hoping you are all getting rest :-)

  • Restless body syndrome!!!!!! Thats a good one . I get it all over legs toes feet arms hands fingers back and neck and quite often i got a belly ache to. Sometimes its dealable just about other days its so strong i dont know what to do with myslef. When it takes over my whole body plus the lack of sleep is when i start thinking if i ended it now i wouldnt feel it anymore. The mental and phsical exhaustion is emmense....... Rish....... A mixture of rls and taking zopicone led to me getting insomnia aswell. Theres so much asociated with rls its crazy but at least we can all talk to each other xxx

  • Heck I thought having RLS in my legs and arms was bad but your whole body dear me that's awful :-( gosh I do wonder if doctors and researchers really know just how much we suffer and that all of us at some point think of ending it!!! They should read these forums !! Enlighten them all! Maybe then will we be heard and helped! Spare lottery money , some of it could be used to help us!! Heres to dreaming eh !!!! I wish x

  • You said Eh'

    Canada? lol

  • Hi all

    Just thought I'd put my five eggs in! I have RLS in my legs and on a bad night, my arms too. On a really bad night, it feels like it's in my head! I find that salt, sugar and alcohol after 7pm are an absolute no-no. I'm on 3.5mg of Ropinrole every night, which usually works for me unless I am foolish enough to treat myself to anything containing salt, sugar or alcohol after 7pm, then I'm off a-jiggling and a-twitching all night - 4.30am on Saturday night in fact! My main problem is that I get "periodic limb movement disorder", which means that my legs/hip will twitch violently enough to keep me awake every few seconds after around 20 mins or so of being in bed. I think we've all been in tears and despair with it, and you're right that no-one seems to really understand except those of us in this exclusive club! It's difficult to find a doctor who understands and knows how to treat it too, but there is some fabulous information on this site: bb.rls.org/index.php. It's a discussion board much like this one and people there have posted links to various documents which give both patients and doctors information on treatment and generally how to cope. One tip is to get your ferritin levels checked - not just your iron levels. Generally, RLS sufferers like us need to have levels of between 50-100, higher than the average lucky so and so's who can sleep undisturbed by our sides! Hope that helps.

    Angie

    x

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