Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]
Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Fenris, I can relate and I don't live in a state where mj is approved for medical use (tho it's probably one of the leading 'grow' states)
One or two tokes or a cookie or two before bed...with the minor side effects of am drowsiness VS the chance of benzo/narcotic addiction
As I've noted before, I haven't smoked in over a decade, but it may be something I try before chancing addiction to stronger meds - according to most studies it's no more harmful than alcohol and the psychological addiction is less than that of benzos/narcotics. I haven't had an issue with addiction myself thus far, thankfully, but it runs strongly in both sides of my family (dad died of cirrhosis) and with my anxiety - I could really see getting addicted to benzo's pretty easily.
Scary thought when within 2 months of my dx I've already had to rule out dopamine agonists for effective tx and there's maybe one or two more options before we start looking at treating me with narcotics/benzo's.
I certainly wouldn't be one to judge. it's ironic that mj is termed a 'gateway' drug and here we are discussing it as an option to get away from the narcotics.
psychick wrote:This post was interesting to me...esp since the side effects of MJ are potentially much less than the side effects of some of the other drugs prescribed for RLS. I haven't smoked pot in well over a decade, but I have several friends who do, so access wouldn't be difficult for me. My question is: has anyone thought about procuring seeds and just growing a couple of plants (either in their garden or in a closet) for their own personal use? That way no need to worry about being busted in an illegal transaction...and I tell you, most of my neighbors would have no idea if I grew it behind our garage and certainly no one would know if I set up a closet as a little grow station. Just an idea.
I'm pretty far from trying it myself - I need to work with my doctors for awhile to see if there are legal solutions (just diagnosed 2 weeks ago), and my sinus issues would preclude smoking anything except as a last resort, but from what I understand MJ is a very prolific weed and is very hardy and easy to grow. And to the people who tell you it's illegal, feel free to point out that speeding is too and people do that all the time!
Biggest problem with cultivation is the fact that you must wait until the plant is matured so you won't have a steady supply with just a plant or two. OK for recreational use but as a medical treatment it's far from perfect. Also penalties for growing is much more severe than just possession. Many places consider any cultivation as intent to distribute and impose very long sentences.
Following this thread with interest myself since I'm looking for relief from RLS only occasionally. I've used pot in the past recreationally and found it side effect free (except for the "buzz" ) and even times I've had enough to use it for prolonged periods there doesn't seem to be any addiction. I can smoke it or not. Definitely not the case with cigarettes. Stopped smoking about a year ago and still get the urge when I'm around people who smoke even when they aren't smoking at the time. Just the smell of tobacco on their clothes makes me want a cig. That isn't the case with pot and I've never heard of anyone smoking just a joint and then going out and killing someone on the highway. Lots instances like that with alcohol yet cigarettes and alcohol are perfectly legal.
The illegality however is the big problem. Never understood why something like pot is so hated even when it seems to be medically useful. They use much more addictive and harsher drugs medically (ie morphene, codene and even cocain) yet they can't even conduct research on pot because of federal laws (actually they can but it's very difficult to get through all the red tape). How can they say it's not medically useful if there's no research?
Cartoon I once saw: Pharmacist to customer, "I'm sorry but that drug has been banned by the FDA as it's side effects are entirely too pleasant".
I am 39 and have had RLS since I was about 5. When I was around 15 I started smoking pot just to party but noticed when I woke up, I didn't remember going to sleep. I was amazed.
Obvioulsy back then I wasn't thinking cure, I was just happy I could pass out.
When weed wasn't enough, I mixed it with drinking. Yeah, passing out was the goal. Unfortunately, there are embarrassing actions between start and finish that can ruin your social status. But whatever, I can pass out!!
The weed potency will wear off (depending on the potency). Make sure if you try using pot that you know the consequences. The only thing it helped me on was being able to pass out. That in itself avoided the tugging effect.
I'm 25 and have had RLS since I was 13. MJ has been a miracle drug for me. I don't know what I would have done without it. Nights when the mirapex wouldn't work or the ibuprofen didn't put me to sleep MJ was the ONLY thing that worked. All I need is about 2-3 hits and I'm relaxed and ready for bed. I have a problem with medications making me feel groggy and I don't have to worry about that problem with weed. I just pray that I don't get a random drug test. It's a shame it's illegal for people that really benefit from it. I don't know what I'd do without it
So, the other night my brother came home after hanging out with a buddy for the day.
He brought me a small amount, about the size of a half-smoked cigarette or so.
It definitely seems to work, as my methadone from earlier in the day was starting to wain when I tried it. My first concern was smoking anything would aggravate me worse, like my cigarettes do, but that doesn't seem to be the case.
I passed out around 9pm I think, slept like a rock last night, and actually ended up sleeping in a little. I woke up at 4am and spent an hour trying to fall back asleep, so that didn't help. But all in all when I am doing my merchandising on Sunday mornings I usually don't take my meds, and do my best to deal with it until I get home.
Although smoking did aggravate me, I was still relatively comfortable, no unusual symptom spikes or coming and going. That from a tiny amount; I didn't even finish it, I probably smoked about half.
I suppose its nice to know that if I ever screw up bad in the future and run out, or do something dumb and get myself completely cut off, I can fall back on this.
That was indeed nice to see, though the list of things it can be legally prescribed for is ridiculously short. I doubt anyone's getting medical MJ for RLS any time soon.
Oh, and don't forget that the feds do not consider states to have jurisdiction over marijuana laws, so they'll still happily arrest you even if you have a prescription for it.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
I'm just curious how many have tried Marinol? I, too, found that MJ would completely take care of my god awful 24x7 RLS and after trying everything in the book that we all have tried I ended up on methadone, but it just messed me up too much; so I have been stable with norco during the day and marinol at night...sometimes with a evening norco on really bad days, however, it seems all days are bad days when you have it 24x7.
I was hoping it would work for me. My son kept telling me that when he doesn't use it the RLS flares back up. So I finally decided to give it a try. It has been many years (child of the 60's) since I've had any. 2 hits and I was off to bed so out of it I couldn't believe it. Boy I should sleep tonight. I was laying in bed, couldn't fall asleep and the legs started. I couldn't make my body move to get up so I laid there with the sensation and no way to relieve it. I don't think that's going to work for me.
My son and I laugh about it now but at the time it was terrible!
Meg
My school teachers were right! I couldn't sit still then and I still can't.
Man, that is the WORST! You're all tired and can't move and your brain has completely disconnected and...the legs start. I truly think it's why I stay up until 3, 4 or 5 AM. I'd rather KNOW for sure that I won't get any RLS than to have to get up from a dead sleep.
But, when it's drug induced like that , it's much worse.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
You know if it works for you got for it!! I'm just not one of those.
I wish I could stay up until that time of the morning. Unfortunately I have to be up at 5:00am. So I'm working hard on finding a way to get to sleep early and stay asleep. You know, fall asleep before the sun goes down and it hits it's worst!
I've also found that another one of the WORST things for me is to take a sleeping pill like Ambien, etc., fall asleep for about 2 minutes and then be up and walking with that in your system. Not a great way to walk around the house!! I find stuff moved all over the place and don't remember doing it. What can I say but it's been a real adventure living with RLS. We learn what can work for ourselfs and what doesn't even though it works for others. Thanks goodness for the ability to hear from others experiencing the same issues. Not that I would wish this on anyone but thank you for listening and helping me find out that I'm not the only one who feels at times that I'm loosing my mind! And a few laughs along the way help a great deal. (Other posting)
Meg
My school teachers were right! I couldn't sit still then and I still can't.
I think I learned it first with Benadryl. Took some cold medicine in high school, passed out on the couch, and soon was falling off the couch from the kicking...I couldn't get off the couch and wake up, but couldn't stop the RLS. Unfortunately, I didn't put the ingredients together for at least two more incidents over a ten year period.
For me, the benzos do that same. They don't help my RLS, but knock me out. I dream I'm having RLS, because I'm sleeping but still have it. It takes like a half hour for me to wake up and then I still can't do anything about it.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
In London it's possible to get MJ thru an 'alternative medicine' route depending on your medical history. Without givin too much detail, I qualify & have tried MJ intermittently over the years. I find at times it can be very beneficial. I've never been a smoker & when I first used to take it my friend would roll up the product with tobbacco for me. I eventually discerned that the niccotine would aggrevate the rls. So I smoked it pure (not too much) & I found I could get through the pain & get off to sleep. There seems to be many different strains of MJ (cross bred) & they are not all available at the same time. I personally find the stronger 'skunks' actually aggrevate my rls. I start to feel a tingling in my feet & hands & that means this MJ is a no no for me. Sometimes I have a break (as I don't really want to be a smoker). After a LONG peroid of weeks with little or no sleep I tried a new strain which knocked me out (just puffing a bit at bedtime). I slept for 7 hours straight. And this continued for a week (almost 6 to 7 hours each night). I was a bit groggy in the mornings but I figured at least I had several hours of sleep. I could feel that it was begining to become less effective & decided to have a break or try a different strain. (I sound like such a junkie yet all the prescribed stuff is what makes me FEEL like one). I did a bit of research it seems that MJ comes in Indica (body high) or Satvia (mind high) I often can't determine which is best for my rls cos the MJ for the brain (may act on the dopermine?) or the body one but I felt this type of MJ may stimulate the rls. It's been trial & error, plus I may invest in a vaporisor (I hope this talk doesn't offend anyone, but you know, whatever works). For the past two weeks while I brace myself to try Mirapex I have practised even better sleep hygiene, not taken MJ for about six weeks now, I continue with a sleep diary, stopped eating dairy (one theory) & am currently having dreams again & getting about five hours sleep, which is very good for me but I suspect it may just be a good 'phase'. I would say currently the pain/burning is slightly worse & the sleep is slightly better. I hope some of the MJ above info is of use.
Nicky
) and even times I've had enough to use it for prolonged periods there doesn't seem to be any addiction. I can smoke it or not. Definitely not the case with cigarettes. Stopped smoking about a year ago and still get the urge when I'm around people who smoke even when they aren't smoking at the time. Just the smell of tobacco on their clothes makes me want a cig. That isn't the case with pot and I've never heard of anyone smoking just a joint and then going out and killing someone on the highway. Lots instances like that with alcohol yet cigarettes and alcohol are perfectly legal. 
What can I say but it's been a real adventure living with RLS. We learn what can work for ourselfs and what doesn't even though it works for others. Thanks goodness for the ability to hear from others experiencing the same issues. Not that I would wish this on anyone but thank you for listening and helping me find out that I'm not the only one who feels at times that I'm loosing my mind! And a few laughs along the way help a great deal. (Other posting)