I am going to purchase some of this in spray form. Hard for me to tell what helps. Some nights really bad and other nights not bad at all but can’t see what I did differently. I do know that often if I sit down to watch tv early in evening then RLS kicks in earlier. But then the nights I do that I am extra tired so maybe that is the cause. We all spend so much time money and emotional energy trying to find cure for symptoms but I hope soon someone will find cause

Still no one really knows cause of lots of problems including cancer so what’s new

26 Replies

  • As you point out - distraction is an important component of rls relief. Do some programmes distract you more than others?

    Triggers are also big- possibly keeping a food diarywill point out some links?

    I'm too tired to checkout your history- so will leave it at that.

    Good luck.

  • I am interested in Medical Mariyuana. The state of Maryland, USA, is opening dispensaries this month. Anyone have any experience with its use for RLS?

  • My history simple. Had it 20 yrs and coped with co codamol but now spreads into arms. Kept diaries done iron magnesium. You name I have tried it. Now awake 2.00 am. No RLS tonight just insomnia. What a bummer

  • The unpredictability suggests it may be a food issue. Although you have kept a good diary you might not be aware of the various foods that might be causing the problem and interacting with each other.

    I recommend you try a FODMAP exclusion diet for a few months and if that doesn't work a more general Low Chemical diet to see if they can introduce any logic into when you have the symptoms.

    If you want more info let me know.



  • You can spend a fortune on remedies, vitamins supplements etc etc and never find the one thing that will work for you. Probably most of us here have done the same. I dont bother anymore, the only thing that works for me are meds, most of the time, nothing works 100% all the time. My only trigger for me is alcohol which i avoid completely. Being overtired can make things worse for some people. Maybe after all these years you are now becoming tolerant to the co-codamol. Is it the OTC co-codamol or prescription one.

  • Prescription

  • sorry Smiffyliz, i must have missed something, what are you buying in spray form

  • CBD my name is Elizabeth and Smiffy Liz is a stupid name. I was called Smiffy at school but think I should change my profile details

  • No my darling Liz your name is lovely, i was meaning what spray are you going to get lots of love

  • Simply cbd

  • Hey Smiff, I honestly would highly advice you to use CBD. Why would you NOT use something thats completely natural??? it can only help and not hurt. do not take prescription medication. FYI there is a cure for cancer... one of them being the Miracle plant Cannabis

  • Thanks. I just meant we don’t know the cause of cancer so shouldn’t get too upset when I don’t know cause of RLS

    I agree natural cures are best

  • Also Smiff, if you can tell me if CBD worked for you that would be great. I have RLS and want to help it by using natural medicine

  • Hi SmiffyLiz, I hope the cbd works for you - it seems to work for some people and I wouldn’t deter you from trying - but in the interest of balance and to avoid undue disappointment I thought I’d mention that I did try it - have tried lots of things - and didn’t find it particularly helpful for the Rls symptoms and it was very expensive. Like Elisse, I have come to the conclusion that for me the only reliably effective remedies are prescription drugs (or Kratom, in my case). I did think the CBD helped a bit with anxiety though.

    Also, I like your user name. It reminded me of those sweet children’s books - the Miffy ones.

  • Hi Involuntary dancer (another great name ) , which type/strain of kratom do you use? I have read up on it and it seems that some will stimulate and others calm down, also it is recommended that you cycle between different ones to avoid tolerance. Ma I ask what has given you success? Thankyou

  • Hi EveW,

    Thanks so much for your compliment about my user name. I use red vein borneo kratom purely because it is the one most frequently recommended for rls as it it supposed to induce sleepiness also. Other strains are more alerting (allegedly). I have tried many different strains in fact and in truth I haven't noticed much difference between them. They are all good against the urge-to-move symptoms. Unfortunately I do not find any of them particularly sleep inducing (they make me feel nicely mellow but they have a tendency to keep me awake in bed - not always - it depends on how tired I am but they're definitely not great for sleep - on the up side this makes them quite good during the day if you've had a particularly bad night and need to be awake for something). Red Thai is rather stronger than other strains and as I type I am thinking I might order some of that for when I am coming off neupro and my symptoms are stronger. I kind of like Green Malay for daytime use if I need to stay awake and am very tired.

    If I sound like a total druggy, it is purely courtesy of the rls - I am not a recreation drug user and discovered kratom in desperation when I was having a really hard time coming off mirapexin when severely augmented. Dopamine agonists are only effective for short periods for me now, pregabalin does not work at all and I suffer central sleep apnea on opioids so would be lost without kratom. Obviously life-style choices can help (keeping iron levels high, not eating too much sugar or elaborate food or drinking alcohol and not eating in the evenings and taking moderate daily exercise). A stretching routine and distraction are also helpful when the legs strike but fundamentally nothing works reliably for me other than medications - I include kratom in this category.

  • Thankyou very much for your informative reply. My only concern is that I take an SSRI so worry that there may be a negative interaction. Also, if you re in the UK, which company do you order from? Thankyou

  • I'm afraid I don't know about the SSRI. I suppose you could check if they can be taken with an opioid. As I understand it, Kratom is similar in effect to opioids. I order from a company called dekratomshop.de. It is a bit of a leap of faith as you have to set up a bank transfer and transfer the money to them first. The kratom comes in anonymous brown paper packages. I'm not sure that it is premium strength but it does the job.

  • Great, thankyou - the brown paper packages made me laugh!

  • I don’t know what Kratom is

  • I'm also a Smiffy, so don't go changing your user name for our sakes! I agree with the other posts, give the CBD a try as lots of people report success. I tried CBD Oil rather than spray, which was also really expensisve as had to import from Holland, and I didn't notice any difference at all. Sugar seems to be my main trigger, as well as standing/sitting too long, especially driving, but I'm still experimenting and learning. Let us know how you get on. Adge (which was also a school nickname!).

  • I have been eating too many sweet things recently as very stressed at home. I also find sitting a lot makes it worse but also exercise also seems to aggravate so we can’t win

  • So many helpful comments. I tried cbd oil but just 4 drops, and afraid to try more although I did used to smoke "the weed" in the old days! Am nervous about experimenting with many things in case it makes RLS worse...sometimes its just unfathomable ....last night it flared up suddenly early evening and at wits end I soaked my feet in hot water with magnesium chloride flakes and it seemed to help (am trying this in place of the Epsom salts)

    Of course I do always need my prescription drugs too...

    I wish you all a peaceful night if possible x

  • Hi group, I have been using CBD for over a month and it seems to have helped my RLS. I started with just 2 drops under my tongue and have upped it to 5 or 6 drops before bed. It truly seems to help me. I use 4 drops in the morning to help with anxiety. Yesterday I was even able to sit through an entire movie comfortably which is a rare event for me. I suggest you give it a try. I helps me fall asleep faster as well.

  • I need to lie down and can’t sit to watch TV then the RLS will be worse and I will have trouble sleeping. Sigh... I often watch TV in my bedroom.

  • Tend to do FODMAP most of time but reintroduced a little bit of gluten as don’t think that’s problem. I also have a bit of dairy but not milk

    Have analysed food file years and not found a connection but will have another go in new year. Thanks Graham

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