Im a 37 yo male who has suffered from RLS for around 9 years or so. During this time I have worked through every single possible treatment afforded to us such as iron supplements, less alcohol, no sugar dieting (ketogeneic diet), eating at varied times during the day - non of which changed my symptoms.
The only thing I felt that made any difference was about 40 squats at around 2am and a deep stretch of all my leg muscles. Sometimes this was very effective but recently it has been less and less so.
Admittedly I have not seen a doctor but when looking on the NHS website about causes being linked to low dopamine levels, I immediately began taking THC at night. First I was smoking which I really didnt want to do (going back to my youth tasted nasty!) But then discovered THC oil which, alongside coconut oil, I have been ingesting every evening before bed. Ever since this change I have slept like a baby every single night!
I wanted to try spread the word as i know it works but some people may be wary of it.
Please get in touch if anyone wants some more information on my experience
GS
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Hi. I am considering the THC oil and have an appointment next week to choose between the smoking or oil. Could I get in touch with you to discuss? Restless leg keeps me awake every night so am really excited at the thought that the oil might help me sleep. Thanks.
It's a pure THC oil. No CBD. I trialled CBD (70% stuff) at the same time as the THC oil but when I tried THC on it's own it did the trick just fine. I know that my symptoms are unlikely to be cured with CBD as it doesn't trigger a dopamine response.
At £50 per gram for the THC oil I will just stick with it. Only a pin head amount applied to the gums is needed. Takes Around 1.5 hours to take affect.
That's entirely up to you but I would probably avoid it during the day as is does affect your balance and cognition, even on a low level and wouldn't help with you being productive (unless you're looking to get creative :D). Looking into some more prescribed medications for day-time would be likely a more sensible option but THC is great for night time - it knocks you out!
Have you been to the doctor about daytime symptoms? That's sound pretty severe and my understanding is that RLS is worse in the evenings.
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Hi Sue, I spoke to my Doctor as I had recently had a lot of bloods taken and my ferrarin was 30 he has put me on Iron tablets and said to have it repeated in 2 months when he will also check thenother one you mentioned. He has increased my Gabapentin tablets to 300mg 2-3 times a day which i can only take twice a day because I end up falling asleep standing up and don't know what I'm doing. I have an appointment with the specialist but the earliest they can do is end of Jan next year
6 mg is 1 and a half times the recommended doseage so your doctor was remiss in prescribing it for you. Also it is no longer the first line treatment for RLS. Gabapentin and pregabalin are. If you don't have 1 mg patches you need to ask your doctor for them as you need to reduce by .25 mg every 2 weeks or so. When you have the 1 mg patches, cut them in quarters so you can reduce by one quarter patch (25 mg). You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.Since reducing the Neupro is going to take you a long time, I won't bother giving you advice on gabapentin/pregabalin. When you get down to using only half a patch, post back here and I can give you advice. in the meantime, check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist like Neupro at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Some medications that make restless legs worse for many people are sedating antihistamines not all antihistamines, SSRI and SNRI antidepressants, tricyclic antidepressants, statins, diuretics, estrogen, lithium, melatonin,calcium blockers, calcium antagonists, steroids. central nervous system stimulants, dopamine antagonists, many but not all anti-nausea medicines, some but not all antacids, some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners, some but not all anti-anxiety, many medicines that treat bipolar and other mental health problems, many medicines that treat epilepsy and many drugs that treat GERD
Delighted it's helped. I use medical cannabis oil with 20% THC occasionally as I discovered illegal cannabis cigarettes helped enormously during withdrawal from Ropinirole ( dopamine agonist). It gave me 30 mins sleep after 4 days of zero rest/sleep.
However, it doesn't stop my severe RLS but it does send me into a deep sleep for around 3 hours. I think it would certainly help many by masking the RLS sensations sufficiently to allow sleep.
It's good that you haven't tried meds, especially dopamine agonists, as I suspect they permanently damage our dopamine receptors meaning we have to take meds for life.
Yeah I'm really not into the idea of that sort of medication. I know what THC does and I know it's benefits. Ingesting rather than smoking is a totally different experience and I cannot recommend it highly enough for anyone who is struggling with their symptoms and any associated meds.
I'm currently sleeping without issue for up to 9 hours. It's actually hard to get up and out of bed sometimes!
30 mins sleep after nothing for four days sounds absolutely horrendous! Have you managed to find a balance without meds?
I'll have to look into serum ferritin. No idea what that is...I'm also very glad you've found something that works for you! Would you not want to try a more potent THC oil if those other meds have bad side effects? Some people just don't want to go near THC and I get it. A little too high a dose of the oil and I can actually be awake with my mind racing for an hour before I eventually nod off.
The main cause of RLS is low brain iron & the majority of patients will see dramatic improvement by raising serum ferritin. This can be done by taking gentle Iron (ferrous bisglycinate) every other night. The other main cause or trigger of RLS is medications like sedating anti histamines or anti depressants.
I've used cannabis above 20% THC and it doesn't cover my very severe RLS.
I have no choice now but to be on meds for life. The one I'm on now stops ALL my RLS with minimal side effects.
I keep reading that type 1 is unknown for the cause. I've had blood tests and no low iron was detected. I feel like I'm one of the unknown cause cases. Doctors here in the UK can't help me, I fear so I'm hoping this current solution lasts,
Doctors tell you your iron is fine even when it's not. They're not taught anything about RLS so do not realise serum iron has to be above 60 and serum ferritin above 100. Ask for actual numbers. It's the first thing doctors should do before prescribing any meds.
With RLS, the more you learn by reading extensively, the better treatment you'll receive.
I tried iron supplements for weeks with no change but I think it's time I went back to the GP...even if it helps educate them on my progress. Thanks Joolsg!
I took 3 x 25mg ferrous bisglycinate every other night for a year & raised my ferritin from 65 to 140. In my case it made no difference. I then had an iron infusion and levels jumped to 785. Still no difference to my RLS.
However, the majority do benefit so it's definitely worth trying.
That's great that you have found someting that works so well for you. Just be aware that ingesting coconut oil is bad for your cholesterol so what out for that.
Thanks Sue - it's the tiniest amount on my gums to prime the cells to take the THC. 1/20th that I'd normally use in cooking but there is cholesterol issues in my family so I'll keep an eye out.
Thank you! As Joolsg said, it is so great that you didn't go down the DA medication road. This means a high likelihood that adding iron/upping your ferritin, and other remedies, will work for you.
The rest of us are dealing with the damaged receptors from too many years on the DA's; we really struggle without opioids.
I am currently using kratom and hirsuta after trying valiantly to make THC and other options work. I recently tried out the suboxone I had sitting here...I caved! It worked well although it sort of oddly keeps me somewhat awake and in a weird zone. For once I wasn't spooning powder into a glass multiple times a night in sheer misery and exhaustion. But, there are many reasons I have been trying not to go back to an opioid.
I have also tried Delta 8, which does help with sleeping through some of it. But neither it or real THC stops my rls/plmd.
The kratom/hirsuta do stop it-and within minutes. I wonder if the problem is that each THC oil product or gummy I tried also had CBD in it, as you said?! Could you give us the exact product or the percentages of the THC/coconut oil? Thanks, again, and congrats...what a life- changer for you!
I'm so sorry to hear that so many of your are living with damaged receptors - it's just shocking to consider. That said, you're making it work and that's great. A lot of the products you've just mentioned I've never heard of (I'm assuming you're in the US?) as we don't use opioids as freely as your health service does.
I can empathise with the 'weird zone' for the odd occasion where I have taken a little too much THC and end up transitioning from relaxed to being actually quite high. I've only been taking it for about 2 weeks so am still learning my limits on dosage.
I've tried CBD tablets before this most recent THC oil and it did nothing for me. It's not that CBD is counteractive, but that it just doesn't appear to give a dopamine response. I'm working on finding the brand but as it's illegal in the UK and I just order the oil from a friend who then delivers me a syringe, I don't know yet but I'm looking into it. I do know that it's incredibly potent, though so that may be a factor to it's success.
Just to let you know that cannabis is legal in the UK now and several people with RLS have been able to get it privately. My cannabis oil doesn't have any CBD. It's 20% THC ( TetraHydroCannabinol) and my private GP recommends supplementing with shop bought CBD if needed.
It's probably more expensive than your source however. It costs around £200 for 50ml at the moment.
Also, many of us are on opioids as they are the only meds that work for us after years on dopaminergic meds.
I have been on tramadol and Oxycontin and they didn't cover my severe RLS and am now on Buprenorphine, an opioid used to help heroin addicts, which is the only med that has worked. It's possible to obtain opioids in the UK and they are effective at low dose. Many UK doctors are happy to dish out dopamine agonists because they are licensed for RLS. However, they have horrendous complications after a few years which UK doctors haven't been taught so when it happens, they have no idea what to do. Withdrawal is worse than from heroin and crystal meth for the majority.
Trying to get low dose opioids in the UK is very difficult but we have to keep trying to educate our doctors about RLS and the safety of low dose opioids as they are the only option left for so many of us.
RLS is so common and yet it's still not taught at medical school in the UK or during GP or neurological training.
Hi and thank you! As soon as you can, you should look at your bloodwork and see if they tested for ferritin. That number is very important for you to know. I was told for many years that my iron was fine when in fact my ferritin number was very low-they weren't even considering that piece of the testing. Or, next time, just ask them to include that test in your bloodwork.
To clarify my other response: I had never heard of kratom or hirsuta before either, until this forum. They are powders from the root of trees in Asia and have been used for centuries, much like thc. The difference is, they are much easier to get and only illegal in some areas. In the UK, Joolsg says you can order kratom online as tea. In the US, it is easy to order online and most vape and head shops also carry it. It does not have the side effects of THC and you don't get high...but it does have opioid-like properties and it is debatable whether one should use it long term. You might want to have either one on hand as an alternative to the THC...for the nights when you need immediate relief or you don't want that high feeling/too tired to get up. Both are powders you mix in water and there are also capsules available.
The suboxone I mentioned is a prescription opioid. Most of us who need an opioid would far prefer to use THC, if we could find one that works! (RLS opioid users usually find one dose and do not need to increase it, fyi.) I have tried an incredibly potent THC oil before and it sounds similar to yours. I had some very bad experiences when I accidentally took a little too much. It took a long time to take effect and then did not cut the rls, sadly. And I ate a LOT! lol.
Haha...sounds like a wild ride, Teddi. The THC I use is 70% potent which I believe is very high compared with other stuff. I may order some of the Kratom or Hirsuta as a back up because I don't think I can take for granted that my supply will always be there.
I'll be booking into seeing my doctor to get checked out. I'll make sure I'm armed with information!
Thanks and interesting on the 70%-I will have to ck what I tried. It was very high, as well. I couldn't talk or walk if I took too much! And that was many hours later....to the point where I didn't think it was related to the thc and I thought I had sudden onset MS or something.
Yes-I would definitely order one or both. They are great for desperate moments and, as I mentioned, work within minutes. You want any of the red strains of kratom powder, or else hirsuta. There are posts where Joolsg said how to order it as tea from a nearby country.
Your doctor probably won't know much about RLS but I hope he or she is open. Or, better yet, don't waste your time...ck around the forum for good RLS docs in the UK. Best of luck!
Thank you for this valuable information. Like you I have worked through many treatments and techniques to relieve RLS over the years but I’m now 70 and still struggling with it. I have avoided any prescription meds which I’m grateful for, but at times I get pretty desperate. I’ve just started on some CBD oil and although it seems to help me fall asleep sometimes it doesn’t eliminate the symptoms in any way. It’s really good to know that I could try THC if need be. All the best and I hope you continue to ‘sleep like a baby’! 😄
Have you ever eaten a cookie which has been baked with dry herb or hash before? It's a very similar feeling but above all it directly stops the sensations in my legs and arms.
Be aware that THC oil is illegal in the UK so it's not very easy to get hold of. There's a link somewhere on this thread that Joolsg has put where you could make a purchase and give it a try.
If you're thinking about trying it, please send me a message and I can help give you some tips and pointers on how to get the best results.
Thanks very much, I am finding the CBD quite helpful in that it helps me fall asleep (in spite of RLS rather than eliminating it) How long the benefits will last remains to be seen, so it s reassuring to have the option of the cookies. Have a great weekend .
You can get medical cannabis privately in the UK for RLS. Ask for the pain clinic doctor and stress that you have pain ( even if you don't) and trouble sleeping.
Initial consultation is £49 & oil works out at about £2 a night.
Joolsg - I also had to say I was in pain to get the prescription for THC/CBD but I honestly do believe it is a form of pain. Pain is an extreme form of discomfort and in my opinion RLS is a form of torture. My doctor agreed and put me on the program.
I agree wholeheartedly, at it’s worst it makes me groan, gasp, desperately rub my knees and even rock! I sleep apart from my spouse (as I think many of us do) .
Thanks for the info regarding the private clinic Joolsg . I would definitely consider that if my partial relief from the CBD doesn’t last, and I suspect it won’t .
Am so glad for you....but please explain what THC is - precisely. And also whether you are connected with it at all in any way now (other than taking it I mean!). And have you also taken it and coconut oil seperately to see which is working for you? I am (?unusually) unaware of my RLS when asleep (husband isnt!) - and it doesn't hurt - which seems to be rather different to many peoples'....I have always suffered from insomnia (and I have major back issues incl scoliosis) but havn't connected the actual insomnia with RLS/PLM, since I am unaware of it at night. My GP suggested Codeine Phosphate many many years ago, (I tried Reprinole which worked - but thank god I instinctively stopped it within days when I realised re augmentation! Never to take it again). I now take 2 codeine phosphate tabs (30/50mgs) only when it gets going in the evening - which eases its compulsive movements considerably (my RLS also doesn't hurt, but is markedly compulsive and can feel impossible). Strangely, I apparently don't twitch EVERY night in the night (and just cannot work out why it varies). I do believe it all started (really years ago) when affected by hormonal changes, but I havn't seen any research re this connection. I would welcome more detail from you. It appears that everyones' RLS/PLM is different....
Here's a definition of THC (Tetrahydrocannabinol) - Tetrahydrocannabinol is the principal psychoactive constituent of cannabis and one of at least 113 total cannabinoids identified on the plant.
I'm not 'connected' to it but there is a story as to how I ended up using it. A friend of mine had a close friend who was suffering from colon cancer. This person had multiple operations and got to the point that they decided to stop receiving NHS treatment and make their own THC oil, rather than constantly being under the knife. This kept the guy alive for 5 more years after stopping NHS treatment in the UK. What ended up killing him sadly was all of the complications from his operations, not the cancer. Anyway, his legacy is this very good product that my friend and I use for different purposes (his is anxiety and stress related) while mine is obviously for RLS. I don't know the product (even if it has a name) but will try and find it for those who have asked.
The coconut oil is used as a primer on my gums - there is no dopamine response from using cocunut oil, it just helps open up the cells to accept the THC oil, allowing it to act faster (without the cococut, it'd take longer than the 1.5 hours I currently wait for the effects to kick in).
I think RLS is very personal and yes it does affect everyone differently. For example in the winter I seem to suffer less....there's no reason I can think of to explain this. Occasionally I would sleep through the night too but I often associate that with 2 previous nights of horrible sleep so I'm just so tired I sleep through the RLS.
I have a strong belief in the healing powers of THC and cannabis in general. Its can ease symptoms of arthritis, epilepsy, neurodiversity conditions and cancer as well as myriad other things. If I had to choose between opioids and cannabis, I know what I would go for.
Thank you for your reply. There seem to be SO MANY different varieties and concentrates - that, as with anything sellable, it seems impossible to know what really might work and what wouldn't, sadly!
I hear you. Lots of people are desperate so taking the plunge and trialling some products can be the way to get to grips with the relief they provide and on what level it should be given. From what I understand, doctors can prescribe opioids for relief but after a while they lose their effect. Have you been to the GP for your symptoms?
No. I have almost always slept badly - ie difficult getting to sleep even when tired...but I then wake up often only to go to the loo! Have got used to it and to not complaining about it after all these years. It must be wonderful to have a full nights' deep sleep!!! I can't imagine it. But it also pretty amazing how well I can manage on only v little sleep sometimes.
Brand name I am currently working on but in terms of how much....I prime with coconut oil (approx 1/16 tsp) and then syringe a pin-head amount onto my finger. Literally the smallest amount is all that's needed.
I'm afraid there is no brand available. It's a home brew of 70% THC oil, which is very high. All I know is it works so if you can find something similar, even of a weaker strength, it may help ease symptoms for you.
Thank you again. I've never tried THC, but I live in California, so it shouldn't be hard to find. I appreciate your sharing your success story with us. All the best to you!
Best of luck Nocturne - I feel if you can get some really high % THC oil then you should find relief. Cali has some very strong strains so best of luck!
I get it privately through a friend who takes it for their own non-RLS related needs. You won't be able to get it through your GP as it's illegal.
You can try themedicalcannabisclinics.com/ but I've just seen that they are not registering new patients at the moment, which is no surprise. The government in the UK needs to speed up the change in legislation. Cannabis is not some menace to society. Everyone smokes it anyway - it's ridiculous!
I will endeavour to find out where the supple comes from as I would love to help anyone who is currently losing their mind over lack of sleep if I can.
I just get a little lump of coconut oil and rub it all on my top gum, attempting to cover as much of the area as I can. I then take a pin-head amount of the THC oil (it's pretty potent) and immediately apply that, too. Taste is a little funky and even spicy at the back of the throat but I don't wash it down. Just leave it on the gums and it'll kick in about 1.5 hours later.
I also found that CBD was not strong enough for me. After trying various combinations of CBD/THC I have found success through vaping the flower. The advantage over the oil for me is it works instantly so I only take it when I need it.
I wake up on average 2 - 3 times a night. However if i go back to sleep soon enough I can manage 7 - 8 hours. The RLS is worse in the first wake up usually about 2 am and that is when I vape the cannabis flower. I try to have a few nights without taking anything and I find a hot bath can work, also I have a device called a "Chi machine" which vibrates the feet but it seems to activate the vagus nerve and I actually get a buzz throughout the body and head as well so that seems to take away the RLS most nights. Sometimes getting on the exercise and working out quite hard can stop it. For me it is important to have an ant-inflammatory diet, lots of raw salads, clean simple good food - grass fed meat. I use stevia or Xylitol as a sweetener instead of sugar and exercise quite a bit. Seems I am keeping the RLS from destroying my quality of life so far - I am 73 and have had it since my 20's.
Sounds like you're doing all the right things. We also use a sweetener but the Stevia after taste is awful for me. We get Erythritol - it's not as sweet as sugar but honestly tastes really nice!
I've just found this product - it may be what you're looking for? It's not what I use as I believe what I have is a sort of home brew that I have happened upon from a friend. It's 70% THC but the product below I can't see exactly what % of THC it is.
Can you say what strain of cannabis is used to produce the THC oil? My understanding is cannabis is extremely strain specific with some strains much more effective for certain applications than others. So far, I have not found a strain that is effective against my RLS but hope springs eternal!
I've discovered I'm probably using some sort of home brew at the moment, from an unknown source. What I do know is that it's 70% THC which is more than double what any doctor will prescribe, which is probably why it is so effective. I've enquired about strain...will report if and when I receive any information.
I have used Indica THC oil for years. Yes it greatly helps RLS. I like that I can titrate it and only use a couple of drops or more if I need it. I don't inhale smoke! However, I haven't found anything that works completely, all the time. Glad to hear of your success.
I put 2-4 drops under my tongue about half an hour before bedtime. No rebound insomnia from the THC. Everyone is different, but please keep dose of anything as minimal as possible.
Sounds like something I’d like to try. Tried smoking, but just can’t do it. Found a 900 mg indica THC tincture.. Sound OK? How does the coconut oil figure into it? A drop of one then the other? Cam in to see if anybody had tried reflexology. Guess I’ll leave that for another day…
Have you tried vaporizing dry herb? It's nothing like smoking, to be honest.
The way I apply the oil is with a layer of coconut oil on my top gum, immediately followed by the THC oil. You may need to experiment with dosage and always start with a small amount (no bigger than a pin-head) so you can get a feel for the effects. I leave the oil on my gums and dont wash it down or away. The coconut oil will help to get the THC agent to your brain more quickly - without the coconut you might be waiting 2-3 hours for any relief. I tend to get to bed at midnight so I apply my oils at 10pm.
Main thing is to go easy until you find the right levels of THC oil for your levels of relief. I hope this helps!
So it's been a Month since I started the THC oil experiment and while overall it has worked well, I am beginning to build a resistance to the THC, forcing me to take larger doses at night before bed (I'm currently on twice the dose I was on the first couple of nights). I am not sure if the resistance will exponentially increase over time, leaving me back where I started but it's worth mentioning to those of you also looking to try THC oil as a solution.
I believe I may need some other meds in the long term but for now I'll keep upping my dosage . I actually took too much last night and feel like my brain has been put in a microwave overnight.
Been to the doctor and had my bloods tested - my ferritin is 94 and totally normal, according to my doctor. They know about my Oil usage but seem happy that I'm happy using it, otherwise they would recommend gabapentin.
Quite frustrated that my ferritin isn't very low as I was hoping for an iron supplement fix but I'll keep going with cannabis oil - I've found a balanced dose and it's allowing me to sleep well every night. Only downside is the difficult wake up in the mornings but a bit of willpower gets me through that initial brain fog.
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It appears that everyones' RLS/PLM is different....
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