cant sleep hate rls

cant sleep hate rls

im 62 year old women had rls for approx 10 years its so nasty i cant sleep sometimes for 3 days in a row i have it in my legs nasty horrible sickly tingling feeling doesn't matter if i stretch them hang them out of bed rub them nothing stops it when the syptoms 1st started i took 2 paracetamols then rls worsened i put up with it for a while cos im not kind of person that runs to doc for slightest thing but as time went on i couldnt stand it anymore so i did some research and asked my doc for medication i had saw on line ropinirole i think it worked at 1st but side affects were night chills i used to be freezing after taking it i started with low dose then ended up taking the max dose allowed i persevered with these for 5 years sometimes it worked sometimes it didnt then my syptoms worsened again so doc gave me codiene 2x15 mg at night dosnt work so now im reverting to 2 paracetamols and rubbing deap heat freeze gel into my ankles and behind my knees when the tingling starts i feel like i could chop my legs off i lie for hours trying to sleep its impossible the worst thing about it is when it decides to spread up my body i couldnt describe the feeling to my doc it felt like to me a thrumming in my chest like an engine starting up i read on this forum someone discribing it as internal vibrations which discribes it perfectly im slightly deficient in b12 so im going to get a supplement also going have a long hard look at my diet after reading this forums post i have got a lot of self help tips i am going to try out thank you every one i appreciate all your imput xxxxx

25 Replies

  • Hi- paracetamol on its own will do nothing for rls.

    I'm not sure if you are still taking the ropinarol or the codeine?

    Your next port of call would be gabapentin/horizant/pregabalin. It might be worth talking to your doctor about trying these.

    Good luck.

  • Have you stopped taking the ropinirole and codeine? Or are you taking paracetamol in addition?

    Describing it to a GP is impossible. Mine smugly said that she got it occasionally, but clearly very mildly, or she would not have treated me with such disdain when I burst into tears begging for help after going through withdrawal from ropinirole and not having slept more than 2/4 hours a night for over 4 months and having symptoms 24/7.

    Hope you find a treatment that works for you. Look at some posts for treatment options as I don't think paracetamol will help enough.

    Good luck,


  • I am so sorry you are dealing with RLS.I take 2(99 mg) potassium,1 magnesium citrate(500 mg),rub my legs down with magnesium gel,and put lavender essential oil on the bottoms of my feet.If you are low in vitamin D,or B-12,magnesium,and can get leg cramps as well as RLS.I order all of this from Amazon.I use Sundown D3(liquid-grape flavor),liquid B-12(orange flavor),Now brand magnesium,andSwanson brand potassium.I hope this helps.

  • Have you tried soaking in a hot bath? I get into my hot tub when things gat bad and it totally relieves the symptoms.

  • Hi khills,

    Some sufferers do find that soaking in a hot bath can help their RLS symptoms, although I do not recall members posting that it totally relieves their symptoms but it is great that you personally have found something that does.

  • Hi I no how ya feel I have had it also for many years a bath won't help maby a hot tub😂 But it's not funny I was on Mirapex then after a while it got worse I'm on ropinorol 2 mg daily then I take a 300 gabapentin in morning then another in afternoon and 1 more b4 go to bed and a zopiclone to help sleep and wow no. More wanting to chop my legs off hope ya go to docs and defo ask for the gabapenton cause they work a treat

  • I was on ropinirole for about 5 years it stopped working i havnt trued gabapenrin im going back to my doctor asap xxx

  • Here is a remedy - try rubbing Red Wine Vinegar onto your legs or any affected area. This is the only topical solution I know of that can affect RLS.

  • Thank you so much im grateful for your reply i will go back to my doctor last night was really bad this sounds stupid but i actually punched my ankle and started to cry i was so frustrated and tired iv just woke up 11.49 am i cant go on like this x

  • jmidd, I am so sorry to read your postings. It does not sound stupid to me that you punched your ankle and cried. It is what quite a few posters do when their RLS is so severe and relentless. Do please go back to your doctor.

  • I will thank u so much for helping me x

  • Thanks il try it xxx

  • You All probably already know these but here are major things in a diet that can trigger a RLS episode:

    SALT, SALT, SALT, Caffeine, Chocolate, Citric acid.

    I downloaded an internet book years ago and I had RLS contained for 5-9 years doing the following:

    -taking Vitamins B6 and magnesium Early in the day - Then taking Prescribed drug Mirapex at night.

    - Also, taking an aspirin Early in the day can help a lot.

    Keep in mind when I mention salt, I am also referring to salt that's already in the food when you buy it at the store!!

    I hope these ideas help someone,


  • Hi, does anyone else in your family have RLS as well, like a parent, grandparent or siblings ?Did you ever have RLS before 10 years ago ?

    Did anything change in your life just before the onset of the RLS, like an accident or illness or did you start taking a new medication ?

    I ask this as most on here have Primary or genetic RLS and know of other members of their family who have it also.

    I have secondary RLS which was triggered as a side effect of a heart medication I have to take.

    At the moment I'm taking Tramadol 3 times a day which is helping fine.

    I hope you get some relief soon, when you go back to the doctors go armed with as much info as you can.

  • Please search for FODMAP and read all you can about the FODMAP diet.

    This is not a commercial. No-one is trying to sell anything. It is not a diet of "healthy" foods It is intended for sufferers of IBS .

    Please read about it.

  • Ugh. I understand completely. RLS is not fun at all. I have been heating my microwave heating pad and putting it on my very low back. That actually seems to be helping even just a little.

  • My story and what works for me: I am an active healthy 66 year old woman with several joint replacements and occasional muscle fatigue at the end of the day and have dealt with this RLS and involuntary limb movement stuff for over 10-15 years. I take one Norco about an hour before I go to bed. This works 98% of the time. If I lay down and have forgotten it, the "creepy crawlies" start in my arms and legs and is hard to get on top of. I usually won't lay down for an hour after taking the med. I've had long deep discussions with my doc about this and they all know that a little bit of narcotic does the trick (for me!). According to this article:

    opiates have been known to be effective for over 300 years. However, there is a stigma around taking this drug and you have to jump through serious hoops since laws around opiate prescriptions changed a couple of years ago (in America).

    I tried Gabapenten because I was getting breakthough RLS in the daytime. But I couldn't stay awake and felt drugged all the time.

    If one truly takes only the necessary amount and doesn't abuse this drug, addiction is not a problem. I've been afraid to take any of the other drugs as I'm pretty sure augmentation sets in after a bit.

    This works for me. I truly understand this condition and it is crazy making... and it is difficult for most people to understand how life altering it can be. I feel fortunate that one Norco daily (for 10-15 years so far) has been effective for me. I need to take 1/2 pill before going to the theatre or show or if I'm sitting on an airplane for an extended period of time. So far so good. When I do feel a break through at an unexpected time, I feel a panic and wait it out. If I need to nap in late afternoon, sometimes it will be interrupted by the tingling starting.

    I hate this and it truly frightens me. But so far as long as the docs and the feds don't declare me a drug addict with one Norco (or an extra 1/2 occasionally), I will hopefully live well with this nasty condition.

    I'm so sorry for all who live with this.


  • You can also benefit by taking iron (but get a type of iron that is non-constipating, such as iron bisglycinate - I take Solgar product with 30 mg. of iron.) Also take calcium BUT! you want one that is easily absorbable in capsules, or gel caps, but not hard tablets. And you want to take it with Vitamin K (mk-7 form) so that the calcium does not end up in your arteries. (You can read about this online elsewhere.) I take Jarrow brand Bone-Up, which has calcium, magnesium, zinc, a few other minerals, as well as the Vitamin K. 6 caps give you 1000 mg of calcium. Take 2 or 3 at a time, spread thru the day, as you body absorbs small amounts at a time.

    Both these things help with calming the nerves of RLS. Other people have mentioned they are taking the iron, on this site. I am also recommending the calcium.

  • I am a 65 yr, old woman, and I have had RLS since I was a child - on and off thru the years. So I guess I can relate to you. I recently replied with advice to you about calcium and also iron, but I want to also mention Chiropractic care. Chiropractors are well versed in RLS. You can look up what they say about it. But I would like to pass on my own experience with Chiro, and you can think about that also.

    Since I was a child I had at least 3 injuries to the spine - normal, everyday ones in the life of people. As I child I jumped off a swingset and and landed sitting down, very hard. At 25, I slipped on ice while jogging and landed sitting down. A few other accidents like this and the result has been compression of the lower part of the spine, which is why I go to the Chiropractor. The nerves run thru your spine and out into the various parts of your body. If they are pinched or otherwise compromised they are irritated and inflamed. This can cause RLS, or given other possible internal causes, it can cause those nerves to act up badly. When my back is out of alignment, my RLS can be very bad. When I see my Chiropractor and he puts things back in place, my RLS then is either not bothering me at all, or just a very little. ( He also had recommended the calcium to make the nerves less sensitive.)

    It is something you could look into. I am one who does not want to take drugs for this, and have never taken them. Altho other people have their own opinions and feelings and experience with drugs, or their causes of RLS are perhaps much worse , I also have seen many people on here speak about the side effects and the fact that the drugs do not always work, or stop working. SO, I am not criticizing them - I am just standing firm in my own opinion about non-drug approaches for myself, and passing on info to others who might like to pursue this. (This is my disclaimer of criticism.)

  • Yes, yes, everyone should read what you are saying so if nothing else at least they understand what RLS is. Based on the few articles I read (one of which I posted here) it seems that the dopamine transport system is not limited to our brains. Dopamine which is a neurotransmitter (not quite a chemical signal, not quite an electrical one) has to be transmitted down our spines, from nerve cell to nerve cell in order to make our bodies un-restless. Allegedly that signal is very weak in people with RLS especially at night. Anything that interrupts that weak signal, such as what you said, a pinched nerve, is likely to make RLS that much worse or cause it to start up in the first place. So anyone with a lousy back (and RLS of course) either has to find a way to make that signal stronger, which I believe is what my nightly iron is doing (just like the Parkinson drugs), or we have to whip our backs into shape via chiropractic care. Be well.

  • Thank you for that info about the dopamine being transmitted down our spines. Makes sense. I did not know about that, I knew about the nerves being pinched. I am glad that someone other than myself also has understanding of the part that the spine plays in RLS. I am hoping that other people will find this of interest.

    I take iron usually before bed, but sometimes after dinner. However, I always take digestive enzymes with food and even with supplements, as my digestion has been troublesome for some time. That way I can digest things much better.

    Also, I do some serious stretching exercises: Miranda Esmonde-White's Essentrics, to keep the spine and the joints loose and flexible. You be well, also!

  • Are you RLS free?

  • I wouldn't say free, entirely. It is bothering me hardly at all right now. On a scale of 1 to 10, I would judge it to be less than 1. (For instance, last night I did not feel a thing. Sometimes ,it may be just a flutter.)

    BUT, since I have had it since I was about 8 yrs. old and I am now in my 60's and it has bothered me thru much of that time, I know it is just lurking there under the surface. So it is like any other condition that needs to be managed or it will surface again. I think the things I have been doing lately have helped a lot, so I will keep doing them.

    How about you?

  • I would have to say that mine began in late teens with long periods of relative quiet. It became more frequent in 40s and every night in my 50s. I always eventually fall asleep after a couple of hours of walking followed by tossing and turning. In addition to taking the iron I stopped taking melatonin the other night which I read on here can make RLS very bad. I have taken magnesium for many years now at my doctor's advise to maintain a healthy heart and for the RLS. My RLS is at zero within an hour of taking the iron otherwise it would keep me up for several hours. Lastly I have mild lower back pain probably from years of heavy weight lifting. I am looking forward to seeing my internist next month to tell him about the iron.

  • By the way I found out the hard way that the iron has to be taken on an empty stomach. There were some nights where it seemed that the iron hardly worked at all and I had to get up and take a second one around midnight. I thought it was just a particularly bad night for RLS when I had to do this. Then I realized that whenever I took the iron and there was food in my stomach (such as when I had a late evening meal) is when I had to take that second iron pill.

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