I am so tired but have been awake for 4 out of 7 hours with my arms and legs feeling very irritable .... I went to the doctors about 8 months ago with the sensation then only in my legs and he said it was a classic case of RLS ... This has since progressed some nights to my arms - oh hell on earth ! ... I love my sleep but it'd dreadful - nothing can b done but to get up ! ... I'm taking Pramipexole - not really sure if they help ! Also how late at night before bed should I take one ? ..I'm ok some nights but then it wakes me up and I have to get a tablet (probably the wrong thing to do!). Told you I was a newby help!........ It's an absolute nightmare !!!!

30 Replies

  • Hi Newby, welcome to the world of the jibbly jabblies. I have had it for 30 years and the docs only diagnosed me with it 2 years ago. They put the arm down to carpel tunnel and was going to operate, but I said no fortunately.I walked so much from dusk to dawn, there was a figure of 8 print in the living room carpet. The docs have had me on Gabapentin, Pregabalin, Tegratol, and I have been on Pramepexole for nearly 2 years, and I do get relief from it, but they keep upping the dose, when your body gets used to it. The best relief I have had is when I had 2 discs removed from my spine and I had to take oxynorm and oxycodone, never had RLS the whole time I was taking that but the docs wont recognise it for RLS. I take 0.088 Pramepexole at 4pm and then 2 more at 7pm, and by then my body relaxes and it lasts until morning God willing.Anyways I hope this has helped, someone said to me 'life isnt about how you survived the storm, its about how you danced in the rain' unfortunately I dont think that person has ever danced with RLS!! Jimeka

  • Hello and thank you for your reply. I was desperately seeking some answsers in the cold dark night when I had my worst night ever ! ... Its very reassuring that other people undertand what Im going through and comforting to talk about it to someone else. Like you say; you have to experience these things to even begin to go there!.....Im currently taking 0.25 mg and it specifies one tablet at night... I assume it something you should take regularly, irrespective of the symptoms appearing to have abated ? .... You sound like you have been through the mill with your symptoms, and others! I wish you well... Karen

  • Hi,

    There are other meds out there in addition to Pramipexole. Have your doc write out an RX for them. I wish you all success in getting rid of this problem, I know how it messes up your sleep, and thus your life !!



  • Thank you for your reply.. I need to learn to control it instead of it controlliing me - I love my sleep and need to ensure I get a good night - regularly !

  • Hi newby you need to take pramipaxole 2 hours before bed rather than waiting for symptoms to start.Are you on any other medication as some can make symptoms worse? You could try taking a magnesium tablet daily and rubbing magnesium oil on your arms and legs.Have a soak im bath at bedtime with cupful of epsom salts in.Try half a dissolvable asprin at bedtime.Some people find hot water bottles on legs help.Donrt do any strenous exercise close to bedtime.Try wearing bedsocks.Good luck!

  • Thank you for your reply. I will do as you have suggseted and take the medication early. Ive been prescribed 0.25 mg one tablet at night. I will try the asprin too .. anything to help. Many thanks for your suggestions (I wear bed socks too (not sure how they help ?) - however, with the menopause too (haha) I get soooo hot and have to take them off. Oh the joys ! ...Karen

  • Hi, what is the dosage of the Pramipexole you are taking...?? It may not be high enough dose. Take it 2-3 hrs before bed. It maybe that you are starting augmentation. Thats when the medication turns against you, the RLS starts earlier in the day and doesnt work so well at night. If you up the dose, then all is fine for a while, then augmentation returns. Never go higher on the dose than recommended in the leaflet. Its better to keep to the lowest dose possible. If you think you maybe experiencing augmentation then time to change meds. Look at this website it has a treatment page of all the meds for RLS, it is a USA based site, but most of the meds are used in the UK. It also has a list of what meds to avoid which can make things worse, including food and drink. Take no notice of the blood pressure pills on that site, they need to update that bit. as they are not used these days for RLS. Also you can look at the NHS Choices website for info on RLS.

  • Hello and thank you for yr reply. Ive been prescribed 0.25 mg - one tablet at night. So I have been loathed to take more than that - maybe another trip to the Docs to advise that my symptoms seem to have worsened might be the answer. I will additionally look on the the websit you have suggested. I dont take any other medications so there is nothing to contraindicate. I have only been taking the meds for about 8 months.

    I appreciate your comments - Im willing to try anything to restore my former good night's sleep ! .... Karen

  • Elisse, check this one out please. You seem to be the lead person

    to answer questions for the group.

  • didn't work for me when i was on them few years back for something else they made my RLS worst

  • I read it, i am going by what the doctor of the website i gave, said to a friend of mine, Dr.B of the is a specialist on RLS. As i said they were given a few years ago for RLS, but not now, probably because they were found not to be effective.

  • Hello Newby.

    I am sorry to hear about your loss of sleep. It is difficult. I was there for about 3 years, and you can verify that with my wife. She lost a lot of sleep too. I have commented on my solution a few times and never seem to get any comments about it. I am all for natural remedies over prescriptions when possible. Don't get me wrong, I absolutely take prescriptions when required, or when I do not feel that there are serious side effects, but I like to try natural remedies first. My solution has been Amacari. It is the best camu camu product you can buy. The high vitamin C, anti-oxidants and other great things in it turn your nervous system into a super-highway. And RLS does not like that. I know of several other people that have seen the symptoms subside, and others that say the twitching and urge to twitch is gone. I am taking 3 capsules in the morning and 2 at night, and I am sleeping great. I have a little urge to tighten and stretch when I sit for an hour at a time, but it is very tolerable. Check out the site to see all of the other great benefits that this product has. I have to say, I have more energy and have not had a cold in 6 months. Also, I will give you the discount code that they emailed me. This gets you 30% off of your order. Type in LOVEAMACARI when you check out. I do not know how long it is good for, but my last 2 bottles were 30% off. Give it a try and please post back how you feel after a week. That is how long it took me to feel the results. Good luck, and I hope you feel better soon.

  • Hello and thank you for taking the time to reply to my mail. I had the worst night ever last night and had to get up twice - when I was so tired. As you mention feeling - I generally tighten up once I sit down at night and thats the begning of it for me... I go to bed and it then awakens me - If I ever get off to sleep (which I never ever had the trouble of doing in former years). I will try your suggestion; I dont much like taking prescription drugs either so it sounds like a postive way forward. I am generally very healthy but without sleep I feel totally drained and irritable. What a dreadful way to feel... ! Thanks again for your positive reinforcement! ...

  • His stuff can make your blood pressure go up.

  • Hi I will give this product a try thankyou

  • Drinking tonic water sometimes helps because of the Quine in it....told by a Dr to one person. Also I take 2 500 mg of magnesium each day which seems to help. When mine starts I use the heel of one foot to rub on the other foot. It sounds crazy but I sometimes find what seems to be the core of the beginning of the RLS. Either below the ankle or the instep of the leg that's hurting. If you have someone to go for a walk with you that also might help

  • Thanks Lassy - I will get some tonic water (I assume you skip the Gin?!) ...I generally get it during the night so dont think my husband would appreciate going for a walk.. but the lounge carpet may get worn out if this carries on...! Much appreciate your suggestions - Karen

  • Hi FIDKAR how are you sleeping now?

  • Ok but had a drink or two last night ... and keep taking the tablets regularly ! Thanks

  • I do the same thing Lassy or I lay on my stomach and grip the bottom

    of my mattress with my feet to make the muscles stay tight and busy.

  • I would skip the tonic water, altho it doesnt have alot of quinine in it, quinine is not recommended to take for RLS, or anything else. Quinine should only be used for malaria. The FDA in the USA has issued a warning for quinine, it can cause health problems.

  • Are you sure Elisse? I thought that warning came from people who drink gallons of it daily. The energy drinks are in question too. I know people who gulp down 6 of them a day.

  • Hi Brett85 here is the info on quinine, also quinine USED to be given for RLS many years ago, because doctors used to confuse what the patient was telling them and thought they were suffering with cramps.

  • I had a night like that last and this will be the same. I can't sleep. RLS

    is tormenting me.

  • Pramipexole works for me, I just get a few twinges in the evening. \Without Pramipexole then twinges occur in both arms an legs at the same time about every 15 seconds.

    My dose is almost at the maximum as I take it primarily for Parkinsons Disease..I now take the extended release version but before that I took 1.06g 4 times per day. This was the maximum allowed.

    If you are only taking a dose to enable sleep then I don't know what dose or when may be appropriate.

  • If you like natural remedies then quinine is probably one to miss. The Wikipedia entry on Quinine is very discouraging.

    There was once a contributor to this forum who reported eating a couple of bananas before bedtime gave some relief. If you use bananas in the search field of this web page and there are a few posts about bananas.

  • Hi how did you sleep last night? What did you try?

  • If you mean me then I find Pramipexole does the triick.

  • Thanks for replying Pete I had meant to reply to FIDKAR but must have done it wrong!

  • Hi thanks for asking - last night was symptom free ! Whoop (Swings and roundabouts ..) There are some lovely people on here and I'm very reassured by everyone's comments - thank you all - the support is amazing :)

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