Good morning! I really hate to admit this, but out of complete and utter desperation, I smoked cannabis with my adult son a few weeks ago while suffering with my legs and in 15 minutes my symptoms totally subsided and I was able to directly go to sleep. I have done it several times since with prompt resolution of my debilitating symptoms. It’s like a miracle! But, of course, it’s not exactly legal where I live and the supply isn’t consistent. I’m very excited though about the possibilities! Anyone else found relief in this way? I’m curious...
My Newfound Relief...: Good morning! I... - Restless Legs Syn...
My Newfound Relief...
80 Replies
•
Yes! In fact I don’t know what I would have done without it over the last 10 years. I’m on Pramipexole and Gabapentin but can only hold back RLS with the added help of weed. I’m hoping it might be decriminalised in the U.K. so that supply is easier and skunk isn’t the only thing available. I make ‘high tea’ as I have asthma and better not smoke.
I’m so glad you’ve found something that works.
• in reply torkatt
Yes! It works but not very easy to get! I’m on a too high dose of Mirapex that doesn’t work well. My doc isn’t informed about RLS and doesn’t show much interest in educating himself. I just keep trying to move forward and the search continues for some weed! I get good stuff, it’s just finding it when I need it...
• in reply torkatt
By the way, I have asthma and COPD and shouldn’t smoke, but I get desperate! You’ll have to share your recipe for high tea with me! 🌺🙂🌺
rkatt• in reply to
I think Mirapexin is called Pramipexole over here so we take the same thing. Pssst ... I too occasionally smoke when I’m desperate. High tea is easy to make. I mash weed with butter and simmer in water for 25 mins. I believe there are more elaborate methods - which maybe extract more - but mine does work. Much better than smoking for the likes of me (wheeze). Best luck!
Yes- during withdrawal from Ropinirole my adult son also helped find an illegal supply of skunk and it was the only thing that helped me sleep for an hour or two. It then caused panic attacks after a week as it was clearly too high in THC like most street cannabis here.
It is going to be legalised for specific medical conditions in September ( or so Sajid Javid has promised ) so I think we all need to start campaigning to have RLS as one of those conditions ( we need to write to our MPs).
I hope you are aware of Augmentation- if you’re on a high dose of mirapex it is very common.
I am so glad I got off Ropinirole- I never have RLS in the day any more and can sit still for hours in the cinema and theatre again.
I’ll never touch another DA.
Hope the cannabis keeps working but if not, consider getting off mirapex and onto a better alternative like pregabalin or OxyContin.
Good Luck
Jools
Yes - what more can we do to get it legalised for severe RLS sufferers . Would like to try it - have a b-i-l who can get hold of it - but don't know if I should try it whilst still taking the Pramipexole as I obviously can't stop and start the P. Any advice? Thank you.
• in reply toSLMCP
Hi!
I take 1 whole milligram of Mirapex at bedtime and it doesn’t work for me. It’s too high of a dose. This medication has no effect on cannabis that I can tell. I have an easy time falling asleep after partaking of the cannabis. It helps me so much! I don’t have a problem mixing them. It’s all good!
Joolsg• in reply to
Wow, that’s way too high.
You will be heading for Augmentation on that dose.
Maybe you are already suffering from Augmentation. If your symptoms are worse, start earlier in the day or early evening and have moved to arms or body that’s a clear sign.
If so, only way out is to slowly get off mirapex with the help of an opioid.
Take care
Jools
• in reply toJoolsg
I understand...problem here is that no one will prescribe narcs and benzos! They want everyone off because of the addicts who are OD’ing. Government push. I have definitely been augmenting. ..
Joolsg• in reply to
rlsfoundation.blogspot.com/...
That’s changing. You should private message Nightdancer and she can let you have details of good RLS doctors in your state ( presume you’re over in the USA?). There are many people with RLS in the USA who are now on opioids.
Show the link above to your doctors.
I got off Ropinirole ( another dopamine agonist) in 2016 and am so glad I did.
Read all you can about Augmentation and the posts on here- you will see so many of us have gone through it and got off dopamine agonists.
Take care
Jools
I might raise it at the RLS- UK AGM on 1 September to see if we can have a formal push/ request for RLS to be one of the specific medical conditions that benefit from medicinal cannabis.
I will be able to get it for my MS but I really need it for my RLS.
It’s so crazy that the USA allows it in many states but here in the UK it’s illegal. I’ll also write to my MP and suggest we all do the same.
Hi, yes it’s a wonderful feeling hey.....
Unfortunately my work place started drugs and alcohol testing so I had to stop even with a letter from my doctor explaining why etc but as it’s illegal it’s that or loose my job 😬
I obvs chose my job but would be very excited if it was legalised for us suffers 🤞🏻
Don’t be ashamed to admit it, you are doing what you have to to stay sane. I’m in the same boat and I don’t feel guilty. I’ve never experienced such mental torture as I did when I was awake for up to 3 days it was so horrific I considered jumping out of my bedroom window so I would break my leg and would have to be put under. Thankfully I didn’t. This condition is so cruel. You do you. And be kind to yourself. Xxx
• in reply toKerry10
Thank you! I feel so desperate with it at times that when I’m in the moment, I feel like I’d do almost anything!
Yes! I use CBD/THC and am finally able to sleep well most nights. Keep experimenting with what works best - I’d almost move to a state where it’s legal, if I didn’t already live in one!
Hi Ive used CBD oil, minus THC compound of Cannabis, but only have RLS in left leg so oil works. So glad you have found relief! Best regards Sleek Cat.
Yes. I do the same.
Yes. Indica in particular has already been studied and proven extremely effective. Only drawback is that its temporary for most. I'm confident that the next most effective treatment will be cannabis based. Maybe 2 years out.
Yes. It's not legal here, either, but fairly easy to get if you know who to ask. I am only taking Tramadol and smoking marijuana to control my rls after augmenting. Fortunately, I can function quit well when high. I don't know what I would do without it.
I don't blame you for trying cannabis as I'm sure it's about relaxation that we can't do when our legs are twitching etc...if you can sleep well and have no side effects, that's good. But are there side effects and what about getting hold of cannabis legally? Thought you were allowed to grow it for your own consumption??!!
• in reply toAllyp69
I don’t know about that! Anywhere in USA?
Good on you. I have often been tempted to try this 'product' but have no contacts who would supply it. Very good news that it assisted relieving your symptoms.
Hi, I don’t have RLS, but after we met on a different forum, I noticed this post. Something you might want to look into is CBD oils. It’s oil from cannabis with or without the THC. It is available, I think without a script. With the THC would require a script. It doesn’t require smoking and can have many of the same positives as actually smoking. Just a thought I wanted to share. I have actually discussed this with my Psychiatrist and he’s all for it but trying to adjust my current meds before using it. I was a chronic marijuana smoker for close to 35 years, self medicating and cigarettes too. I developed COPD and asthma, couldn’t smoke either and still breathe. Stopping the weed was like withdrawal from heroine for me and sent my anxiety and depression into overdrive, to put it mildly. This is why I’m fearful of completely legalized weed. Many people have and will suffer psychological issues. Anyhow, just wanted to share about the use of CBD’s, might be a legal option for you if it helps. Good luck, be well! 😊
• in reply toKing1961
I took some CBD oil without THC before bed. I didn’t think it possible to feel this bad. Are you there? Can you talk for a minute or 2?
King1961• in reply to
Yes I’m here. I’m sorry your in pain.
• in reply toKing1961
Oh! I’m exhausted! I can’t stop moaning with each exhalation. I slept 3 hours Friday night and then worked 12 hours Saturday. Saturday night I never shut my eyes because I was talking to my 27 year old son who was/is suicidal and then worked another 12 hours Sunday. I had a muscle cramp in my right calf that woke me up. Have slept an hour and a half and will work another 12 hours today. I feel as if I’m drowning...
King1961• in reply to
Lack of sleep makes it more difficult for me to sleep also, add in complete physical exhaustion and I’m sure it’s all taking a toll on your emotions too. Breathe deep, find the most comfortable spot you can, close your eyes and just be, just breathe.
• in reply toKing1961
OMG...I’ve never felt this way before...this goes beyond “pushing through” Thanks so much for being there for me. I’m unable to breathe deeply!
• in reply toKing1961
I’m surely dying...can’t breathe correctly. I’m lying down now. Can’t stop moaning. Oh Hod, please help me...
King1961• in reply to
I’m sorry, I wish there was more I could do. What has worked for you in the past, if anything? Try that. Hot water bath, do you have any sleep aid, like a prescription?
• in reply toKing1961
No, just trazodone which aggravates my restless legs
King1961• in reply to
Does your RLS happen in every position, or just when you lay down?
• in reply toKing1961
Anytime, any place, anywhere when I attempt to relax. All extremities. My heart is having arrhythmias and my feet itch really bad. So weird...maybe I’m losing my mind...
King1961• in reply to
No, not loosing your mind. We all think that at some point, not a real thought. Thoughts are not facts. Have you ever attempted guided meditation? It seems too simple to be effective for anything, but can be very effective for many things. Probably won’t help with RLS, but may allow you to relax? If you google “guided meditations” you tube has hundreds. They have helped me to catch my breath when panic or anxiety was at a high point. Just a suggestion.
• in reply toKing1961
Thanks so much!
Svengolly• in reply to
I’ve had horrid unmanageable spikes for days as well ... and then lulls . So hang in there . // last month it spiked I used 1gram of red kratom for three nights and then miraculously my rls lulled for a week now .yeah !
King1961• in reply to
Two of my three children, 28 year old son and 23 year old daughter both suffer from anxiety. I too feel responsible for passing whatevs it was to cause this. I can’t imagine having to set and talk to either of them if they were suicidal. Please take them for help, the ER, somewhere. I’m sure you’ll feel some relief knowing he is safe, and hopefully headed for some good help. I don’t know what else you can do. Thank God, your there for him. Your obviously important to him or he wouldn’t talk with you about it. 🙏
• in reply toKing1961
I had to work this morning and husband took him to ER and they wouldn’t take him until he went through detox and sent him home. What a joke! Wheezing...never felt this tired and bad in my life...seriously
King1961• in reply to
Not good. Can you find a good spot to set or lie down and stretch your arms above your head, like your reaching? It will stretch your lungs allowing more O2 to get in.
• in reply toKing1961
Ok, I will
King1961• in reply to
I’m sorry, I don’t know exactly what will help you? I’m glad your trying though.
• in reply toKing1961
I sooo appreciate you right now...
• in reply toKing1961
I don’t know what to do with myself.
• in reply toKing1961
I have to shower and eat breakfast. Don’t know if I can do that. Then work another 12 hours.
King1961• in reply to
Just do as best you can. That’s all you can do. Sleep is so important to so many issues we both face. There has to be something that your Dr can give you to sleep. Some one else told me about a melatonin pill that is easy on the system but makes one sleep well. I don’t want to recommend something illegal, but a puff or two, if you have any would surely help.
• in reply toKing1961
Yes! If I only had some. Works so well for me...
I was prescribed seroquel, for sleep. Low dose. It’s antipsychotic drug, sounds terrible, but also used for sleep. I was a knock out punch for me and didn’t make me groggy after a week or two of using? Just trying to give you all I can. Your Dr would be a better source to know what would work best?
• in reply toKing1961
I’m about fed up with my doc. I need some sleep...
King1961• in reply to
I’m unsure of what else I can offer you except to stay strong. Radical Acceptance is a tool used in some circles of therapy. It is based on ones ability to accept( for now) that this is how I’m feeling and fighting it isn’t going to change it, quite possibly make it worse, so for now, I’m going to allow it, preserver as best I can, and see what tomorrow-brings. I haven’t used it for physical symptoms, mostly for anxiety and depression. Something to think about.
• in reply toKing1961
Yes...I am calmer! I’m itching all over though. Now that I’m calming down, I can hear myself whining...
• in reply toKing1961
My son took Seroquel briefly and it made him seem messed up, of course, he drank with it. My Psychiatrist appt isn’t until the end of next month.
King1961• in reply to
Yeah, alcohol and seroquel are a bad combo. I’m glad your calming down. Hope you rest easy. Get a different Dr. I’m signing out for now. Prayers will be said for you and your son.
• in reply toKing1961
Thank you so much for your time and your caring messages. You have helped me calm down! Thank you!!! ❤️👍❤️
• in reply to
Born in 1961?
King1961• in reply to
Yup
• in reply toKing1961
Me too...3-17
King was my first retriever. I had pointers for pheasant hunting, but nothing like King. We duck hunted. Have an awesome dog now too. Drake, he’s a 10 year old Chocolate lab. Love of my life.
• in reply toKing1961
Oh wow!!! I just had my precious white Siberian Husky, Drake euthanized about 2 months ago...he was 14. Loved that baby!
King1961• in reply to
I’m sorry. I know how that feels. I’m already dreading the day I have to take him, not sure I will be able to. I can’t go anywhere without him. The bathroom even. When I leave the house, he’s waiting right next to the door waiting for me. He’s so well trained I don’t have to speak to get him to do anything, all hand signals. Took a lot of patience, but my kids helped me train him when they lived at home.
• in reply toKing1961
That’s beautiful ❤️
• in reply toKing1961
I found a few Seroquel outside in the garage and their expiration date was some time in 2017, 25mg. While desperate and actually hysterical last night, I took one and slept for hours! Thank you for bringing that possibility to my mind. 🌺🌞🌺
I worked out that cannabis is my problem! I first got RLS when using sleeping pills, and since then, any psychoactive medication sets me off. I was using cannabis against my cancer, but I've had to stop it because it set off my RLS. Extremely frustrating! Cannabis, for most people, is an excellent treatment for any neurological condition.
• in reply tolawshalls
Trazodone set me off years ago. I had no idea what it was back then. I can no longer take that medication, like you. So far, so good with the cannabis! Completely relaxes me.
I’m so sorry to hear what you’re going through.
Stress is a massive trigger for RLS and you’re going through so much.
Augmentation on a dopamine agonist is hellish and I am full of admiration for how you’re still holding it together and working.
If you can take holiday ( vacation) or some time off work- do it.
You need a straight run of time off to cope with withdrawal and what you’re going through with your son.
Please try to see a doctor who understands about RLS and withdrawal from dopamine agonists. I don’t know what the legal position is like over there in the USA but here in the UK you can get your doctor to sign you off work and your employer cannot fire you.
I am sending you every positive thought I can and wishing you strength to get through this.
Jools
• in reply toJoolsg
You’re so kind and thoughtful...thank you! I’ve only been on my job for about 5 weeks so vacation is out of the question! I’ll worry about that tomorrow! 🌷😉🌷
works wonders for me too. I augmented off ropinirole. And my doc was unwilling to help me with an opioid. I too in desperation tried smoking weed for the first time. It is a life saver. I’m sleeping better than I have for years! and even though it has not been legalized in my state yet, it seems to be a much better/healthier option then going on an opiod.
But until it legalized I can’t be picky about what strains I get. I understand there are some that are more helpful than others. I started vaping as I was hoping it would be easier on my lungs as a non-smoker. But it’s still pretty harsh. I would love to have other non-smoking options.
Its seems a little crazy to me that there is there completely natural substance out there (weed) that will totally clear up RLS symptoms, and from what I understand other movement disorders like parkisons too, and has little to no ill side effects, but we can’t use it b/c the government has made it illegal, meanwhile big pharma drugs with all there harmful side effects and death, are the only legal options we have!
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