i have been suffering from RLS for years, i have never been to the doctors or sought any treatment,

it has now got to the stage where it is unbearable and i know i need help. Last night i couldn't even sit down in the end and was pacing up and down the living room at 3 o'clock in the morning in tears. I am only 37, I was 20 years old when I first startyed to show symptoms, this would be during the day if I had an afternoon nap i would wake with an ache in my legs which could only be cured by getting up and moving around. I now find nearly everynight my legs won't let me sleep, the minute my body starts to relax into sleep they have to move, like there is something boiling in them. On the nights i manage to get to sleep i'm okay until about 6 to7 in the morning when i have to get up because they'll start again. I find I'm very tired the following day after I've had what i think is a good nights sleep of 8 to 10 hours, i feel as though i haven't had any. I also kick out quite badly when i'm starting to relax in the evening which means i cannot snuggle up with my partner or any of the children as i kick them. My symptoms were manageable until my last pregnancy 2 years ago, it would only happen if i let myself get over tired. During the pregnancy the symptoms were awful during the evenings, (I'd find myself standing leaning against the wall to watch telly, like i was waiting for a bus) but no so bad once i'd gone to bed. After my daughter was born 18 months ago the symptoms seemed to abate and i thought i'd be okay. aLL through the first year of her life i would fall alsleep the minute my head hit the pillow, i think this was the sleep deprivation of having a baby who woke up 2 or 3 times a night for feeds or just a cuddle. Now she sleeps through the night my symptoms have come back and worsened to the point where i dread the night times. It plays on my mind all day. I've tried hot baths, reading going to bed ver early or very late none of which seem to work if it's going to happen it just does. It's happening about 3 or 4 times a week at the moment. I don't really know what question i want to ask, I think i'm scared the doctor will just tell me to go away and stop being silly, what do i do if he/she does? I'm scared of the side effects of the medications but know i need help, to just talk to someone that understands.

12 Replies

  • hi jolar, you just feel how we all felt when we first realised what was wrong with us, dont be scared of meds, we have them for other things, so why not RLS, when i realised what was wrong with me i spoke to my doctor, he was a bit dimissive, so i printed of a lot of stuff and took it back to him, he then looked things up himself and said ok, try this med, since then hes more understanding. This rls can control your life if you let it, you need to control it, go talk to your doctor, he/she may put your mind at rest, and theres lots of us on here for support when you need us, your not alone with this, thats how i felt in the start of my rls, but ive learnt now that i have to be in control. wishing you luck with the doctor, do let us now how you are.


  • I found out I had a very low iron level.

    Iron supplements seem to be helping (only have been taking them 3 days).

    Maybe you could have your vitamin and iorn levels checked before taking any meds.

  • Hi, jolar, as Jean, has already said, most of us have felt the same as you regarding seeing our doctors. Do what Jean says, print off some info on RLS and take it with you, just in case...Lets hope you have an understanding doctor who does know something about RLS...

    Does your husband say you kick about in bed at night..? Because of what you said that you have had 8-10 hrs sleep but still feel so tired the next morning, that sounds like PLMD, Periodic Limb Movement Disorder. You are asleep but you are kicking around in your sleep...People can have both RLS and PLMD.

    I also used to be very scared when i first started taking meds. for mine, i have a very low tolerance to medication so i just knew i would get some sort of side effect. I actually use to leave the medication sitting on the side in the kitchen waiting to be brave enough to try them... :( Not everyone suffers with side effects, my brother doesnt. (lucky him) or the side effects can be minimal.

    RLS can wear you down, so be brave and make an appointment to see your doctor, if you dont get the help you need, then see another doctor.

    Let us know how you get on..

    Irene.. :)

  • In answer to what Dican has said, you can ask your doctor for a Ferritin Level blood test, your Ferritin is how your iron is stored. For RLSers, our ferritin level should read 50 or above. its a different test than just an iron test. I had to ask my doctor for one, he didnt know about the level of ferritin could be a cause of RLS. I tried the iron pills, but it didnt help me. It can take for ever for some people to up their ferritin level and still it not make any difference. Some can be lucky and find the RLS symptoms reduce or even go...

    Also never take iron pills without seeing your doctor about them, too much iron can cause problems. also if you do try them, take a Vit.C with them, it helps to absorb the iron, trying to absorb the iron is the biggest problem when taking them..

    Hope that info helps you too when you do go to your doctor..

    Irene.. :)

  • Hi Jolar

    First of all welcome to the forum you have no need to feel alone now that you have found us. :) Have a little read of some of the questions and blogs on here which may help you.

    I have had no meds prescribed for RLS - well I was one time - but never took them - this was years ago. My RLS comes and goes and and as I have got older the horrid times have lessened greatly. My gp did recognise the symptoms when I menioned them and also at the pain clinic when I went for something else and threw the RLS in to the convo as well. It was the pain clinic that prescribed the RLS drug that i never took.

    Why not also print out the message you have sent us and take it to your gp to read. These symptoms are affecting your quality of life dramatically and the gp should definately be made aware of this. Please do not the GP turn round and tell you it is all in your mind or you are depressed.

    Taking some literature along with you in case your GP is not too aware of RLS would be an excellent idea.

    You look after yourself, be strong and go to the gp. We are here to back you up, imagine we are standing behind you when you are in your appointment. :)

    Kaarina :)

  • PS I wish there was an Edit Button because I have made a few typo errors/words missed out, but hope you know what I meant!!

    Chin up,

    Kaarina :)

  • thankyou to everyone who answered me. made me feel a bit tearful, very emotional today (no sleep) will definitely go to the doctors on monday and will be very firm, won't take no for an answer. will let you know how i get on. It's nice to know there are people there to talk to.

  • Hi Jolar

    I do hope you can get an appointment on Monday. Yes, try to be firm but polite. If you go armed with information you have gained from this forum, a list of questions you may wish to ask and some information perhaps to hand in case you feel your GP is not too well informed I am sure it will go well. Do tell your GP what you have told us and remember it is not in your imagination at all and you feel well adjusted too ;)

    Kaarina :)

  • I'm finding it very interesting to hear how many began to experience symptoms when pregnant. I suppose it could be the age where it begins, or maybe something in pregnancy triggers it. When I dozed off while driving I realized that I couldn't keep up with the lack of sleep. After years of trying different meds without consistent effectiveness, I began on the Neupro Patch and it has truly been a miracle. Everybody says "just get up & walk around". Yes, that helps, but you can't sleep while walking! You are probably not getting restful sleep even when you're thinking you are. If your doctor can prescribe a Sleep Study, that might show the symptoms. Don't give up!!!

    It is so nice to have somewhere to whine about this when not sleeping. There was no name for this or internet when I began, but this forum is wonderful for sharing information and encouragement. Best of luck to you tomorrow!

  • Hi Jolar,

    I know how you feel, if that's any consolation!

    Go and see your doctor, he/she will understand and be sympathetic hopefully, if not, find a doctor who is.

    Check your caffiene intake, that can cause the symptoms to start, chocolate does as well, which is very bad news!!

    Is your partner sympathetic? Get him to give your legs a good massage before going to bed, some nice oil, and that relaxes the muscles, plus a massage is good as well!!

    Iron levels have been mentioned I believe, so I won't say more on that.

    It's been mentioned before in other blogs, so I will mention it again here,

    smoking weed (Cannabis) seems to work as well, in The US it is even prescribed by doctors in some states for RLS!!

    Don't hesitate to come back here for a chat and sympathy, we have all experienced, more or less, your symptoms, so we can empathise with you.

  • Hi Jolar, reading your post was like duplicating my life, I too stood up most of ny pregnancy, that was 11 years ago and I have suffered every night since, like you I have been afraid of perscription medicines and always tried alternative methods, but nothing worked. After spending a week crying at 3,oo a,m, every morning in desperation I have now agreed to try Gabapentin, they do not have as many side effects as ropinerole so I have been told, I am only on a low dose at he moment and as yet no improvement, but will slowly increase the dose and see what happens. Take care its a very lonely disease isnt it xx

  • If you truly wnat some good information to a doctor a very good we site is rlshelp.org The treatment page is the "RLS BIBLE" as far as a lot of my members are concerned. The treatment page as foods and drugs to avoid. at least you know you need help. Lot so of women develop RLS or et it worse during pregnancy. approximately 28% of all women who have RLS during pregnancy will have it return at some point, even years later, whether you had it before pregnancy or not. If your GP does not know how to treat RLS, ask for a referral to a neurlogist or a sleep doctor. Everyone with RLS should have a sleep study done, to see if you also may have PLMD (kicking in your sleep) or sleep apnea. If you are kicking all night, or stopping breathing, your brain suffers from too many arousals and you do not reach the right stages of sleep. You cannot make up for lost sleep. There is no bank to store it in for later, so gettig a handle on sleep deprivation will also help with many other health problems that may come along. Sleep deprivation kills, and regaining quality of life is key, whether you take meds or not. I would not be able to function at all without some meds for my RLS, that is for sure. I have had it since I was 14, and am now 56.

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