Hello, has anyone any information about being able to obtain medical cannabis as above as I have come to the end as far as medication is concerned as they do not help, but present one with augmentation and side effects. The 52 years I have suffered RLS have had a tremendous toll on my mentally and physically. The sleep depravation has totally ruined my life. As I get older it is all getting worse and I dread what the future holds. I know Medical Cannabis has been used in trials for RLS, Fibromyalgia (which I also have) and was really hoping to be able to obtain on NHS, but my GP has informed me that it can only come from a Consultant, luckily I am seeing one in four months time, but that is still no certainty that I will have any prescribed. Has anyone ordered anything from internet, I am so wary of companies though. I have been in touch with MHRA (Medicines and Healthcare products Regulatory Agency but with nothing definite as to what will be available. Any advise would be gratefully received.

7 Replies

  • It's available in Ireland from health shops- however - they are not allowed to advertise it, or promote it in any way. I gather one goes into the shop and ask for it and follows the assistants eyes to the correct shelf space???

    A friend gets it on the internet for her MS husband. I expect anything on Amazon can be relied on.

    Looks like a typical "Irish solution to an Irish problem"

    Hey Ho- Away we go!😆

    Have you tried opiates? (Oxycontin)

  • Have you only tried the dopamine meds, because that is the only class of meds that causes augmentation of symptoms in the context of RLS specifically. There are other meds to try. However, some people have had good luck with CBD oil in some cases. However, I am in the US, and cannot advise on the NHS. I live in a medical cannabis state in the US, and smoking it helps me relax and sleep. have not tried the oil. But, like I said I have no idea how one can obtain it in the UK.

  • I have asked my GP. Apparently only certain consultants are allowed to prescribe the medication you refer to. However I use a Medipen which uses CBD oil. I use it sparingly and only when I am still struggling despite my medication. I am not sure whether it brings relief or I feel better because I want to! Have a look at their web site.

  • Hi. I have been using CBD capsules for about a month now with some success.They do not eliminate symptoms completely( but neither does the codeine I take once or twice a week) but it is definitely helpful. On the advice of a friend who uses it for Fibromyalgia I obtained it on the net from CBD brothers. It is organic. It isn't cheap but for me it has been worth the experiment. I will continue to use them.x

  • I have been using CBD oil for nearly a month in increasing doses. However I would have to say I do not perceive any obvious impact on my rls. It is very expensive and I do not think I will buy any more. Marijuana was considerably more effective though it did not totally quieten my symptoms. It remains the only thing that has enable me to consistently get to sleep and sleep soundly but I think it is the THC element rather than the CBD that helps with that - or maybe of the two together. Marijuana is not legal in Ireland however and I don't have access to a regular supply.

    I have two problems with rls: the first is the awful urge-to-move crawley problem which renders sleep impossible. As my iron levels gradually rise with an oral iron supplement, these symptoms have eased considerably and I am in the process of replacing all my other meds with kratom. I stopped neupro a couple of weeks ago and am down to 5mg of OxyContin per day from a former high of 30 before Christmas, I am also gradually reducing the pregabalin I take to try and overcome the alerting effect of OxyContin and rls generally - see below. Kratom seems to deal with the urge to move, symptomatic, aspect;

    The second problem is that I just don't sleep even when I don't have symptoms. I lie awake for hours and often just when I get to sleep the urge-to-move crawleys start up again. So far I haven't found kratom particularly effective at getting me to sleep and pregabalin no longer works at all. I am going to experiment with raising my dose of kratom as I have read that it is more soporific at higher doses.

    That is my longwinded way of saying that Kratom is definitely more help than CBD - at least for me.

  • Ummm, that oral iron supplement that you are taking may I ask what kind it is and what time of day do you take it? Do you know for sure your iron levels are rising meaning via a blood test or do you assume so since your RLS symptoms and/or the amount of meds you are taking are subsiding?

  • I use plain old marijuana on occasion and I sleep much, much better. But it's expensive and illegal.

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