Another update: I am going to beg you... - Restless Legs Syn...

Restless Legs Syndrome

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Another update

Whippetmama profile image
49 Replies

I am going to beg you all to get your hands on CBD oil made from marijuana - not hemp. It is nothing short of a miracle. I have been using the oil for a bit over 2 months and it just keeps getting better. It has now been a week since my legs last bothered me. So if you are somewhere where it is legal to buy, do so.if you live somewhere where it isn't legal, learn to make it yourself. There are lots of YouTube videos showing how. It does not make you high. This is absolutely not a recreational medicine. I can't stress enough what a miracle this is. Even the neuropathy in my feet is better. It must be the full spectrum CBD from marijuana, also known as Rick Simpson oil (RSO).

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Whippetmama
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49 Replies
Battleground profile image
Battleground

I thought that CBD was made from hemp oil. So what is the CBD that you are taking made from?

Whippetmama profile image
Whippetmama in reply to Battleground

Full spectrum CBD oil made from the entire marijuana plant. It does contain THC but most do not experience any "high". The THC is absolutely necessary to get the full benefit as it attaches to the endocannabinoid receptors in the body. The hemp oil producers will tell you otherwise (and some people do get some benefit from hemp) but the research is out there.

BeachGolfer profile image
BeachGolfer in reply to Whippetmama

I also just started using Full Spectrum CBD oil made from marijuana plant rather than hemp plant. I couldn’t detect any difference when using the oil from hemp. The Full Spectrum has allowed me to decrease by half the Oxycodone that I take at night. I was visiting in a State where recreational use is legal so I was able to by it at a dispensary that is setup for both medically prescribed and recreational purchases.

dancer2 profile image
dancer2

I am at my wits end. Augmented on Mirapex. Had terrible side effects from Gabapentin. Now had to stop Methadone because if severe nausea and depression. I have a medical marijuana card and so 3 days ago bought THC with a vape pen. I has not helped at all. I haven't slept in 4 days. I was wondering about RSO oil. How do you take it and how much.

Whippetmama profile image
Whippetmama in reply to dancer2

What percentage of THC is in your oil and is it full spectrum oil. THC is only one of the components that you need. The oil I take is 33% I assume that your oil is marijuana based since you have a card. As far as dosing, it varies from person to person, so the rule of thumb is to start low and gradually increase until you achieve the desired effect. I take 1 ml in the late afternoon and another before I go to bed along with 2 tramadol. It works best if you take it as soon as you get "that" feeling.

dancer2 profile image
dancer2 in reply to Whippetmama

I know nothing about CBD and THC. According to the package the liquid live resin is 81% THC, 6% THCA, CBD 0%. I have tried vaping it the past 4 nights with no relief- only irritated throat and lungs. I will try the RSO oil. Hopefully I can take it orally but have been told it has such a terrible taste. Thank you so much for your post. I'm praying this will provide me relief.

solticeart profile image
solticeart in reply to dancer2

You can put the oil in an empty or even partially full capsule and swallow it with water. That’s what I just did so we’ll see. When I bought it I was told to use a piece the size of a grain of rice and I could just wipe it on a aspirin or any pill the. Swallow with water. It does take longer to work though. I don’t and won’t smoke anything anymore, so that’s the only way I can take it.

Whippetmama profile image
Whippetmama in reply to dancer2

rxleaf.com/cbd-only-works-i...

Artjr102 profile image
Artjr102 in reply to dancer2

I’ve been buying medical marijuana for the last year and a half and Maryland. Out of 15 or 20 different types only two have help me with my RL. Moon dawg or gorilla glue gelato. The moon dog was in concentrated oil in which you Vape. The Gogorilla glue gelato was in flower form which you smoke out of a pipe, preferably a water pipe where it’s not as harsh on your throat. It can pretty much guarantee me a straight 2 to 2 1/2 hour sleep with either method. I have found that I also need to do marijuana and brownies one hour before bedtime. It takes one to two hours to kick in but it lasts for at least six hours .

Hopefully this will help you.

RLSgirl profile image
RLSgirl in reply to Artjr102

I've often wondered about edibles. If they would work better. I've only tried smoking. Its good to hear that it works for you and lasts so long!

solticeart profile image
solticeart in reply to RLSgirl

I was to;d Edina’s work even better for a lot of people. I can’t stand the high you get anymore which is weird since I was a big pot smoker in the 70’s and early 80’s. Now I can’t stand it and just feel paranoid and makes me feel everything even stronger. I do use cbd oil and some has a low the in it but doesn’t get you high. I use cbd lotions on the sore muscles and arthritis but for my main pain and rls I take kratom. It works better than methadone or oxy did and I don’t get high, it just stops my pain plus during the day I take a white strain and mix it with the red and then I also have energy all day. Love the stuff but wish it was cheaper and would last longer than 4 hours but then my methadone only worked for 4 hours too..lol at least my emotions woke up and I actually feel normal again for the first time in over 18 years. I didn’t even know I was so numb.

Bat3353 profile image
Bat3353 in reply to dancer2

Have you tried lyrica

Raven123 profile image
Raven123 in reply to Bat3353

I tried it. No luck.

nightdancer profile image
nightdancer in reply to Raven123

That was a bad drug for me also. I have tried EVERY med imagined that might help RLS. Either the side effects are too much, or they just do not work. BUT, opioids that I must take for my back, or I would not be walking, also is what keeps my RLS at bay. And YES, it is a fight in the US right now. But the fight goes on, and I spend more of my time with the pain community now, since opioid laws are out of hand and the CDC said "ooooops!" on their guidelines from 3 years ago. We are finally making progress sloooooooooowly. Iy is criminal, literally, what they are doing to legitimate pain patients and it affects ALL of the RLS groups also.

dancer2 profile image
dancer2 in reply to Bat3353

Dr. B. told me not to take Lyrica because I had such a bad reaction to Gabapentin.

Bat3353 profile image
Bat3353 in reply to dancer2

What happened

dancer2 profile image
dancer2 in reply to Bat3353

I experienced severe side effects: nausea, tremors, memory loss, loss of balance, severe depression, etc.

nightdancer profile image
nightdancer in reply to dancer2

same here, he told me in an email. :)

jjyankee profile image
jjyankee in reply to dancer2

I cannot tolerate straight THC either- (or vaping).

I bought cannabis oil at my dispensary that is a 1:1 ratio of CBD/THC. From all I've read, and my own experience, it is the combination of the two that create magic for all sorts of ailments. My first purchase was a high quality full spectrum CBD oil I bought on line- this was not helpful on it's own, however, during the day I mix this with my 1:1 oil to create a 3:1 mix as the 1:1 makes me too sleepy for day time use. The CBD/THC oil is truly amazing- after trying numerous meds for restless legs it has worked better than anything else I've tried.

Whippetmama profile image
Whippetmama in reply to jjyankee

Hip-hip-hooray!!! It is truly amazing!

Joolsg profile image
Joolsg

Delighted to hear this. I have been using a vape with cannabis oil ( it contains THC but no idea how much) made for me here in England where it is very illegal. It helps me sleep ( still take OxyContin and pregabalin). I don’t think it is as good as the stuff you are taking because I still get breakthrough RLS at least 4 nights a week.

However, I firmly believe it is a miracle drug & hope governments legalise it everywhere.

RWick profile image
RWick

Heading in this direction real soon. Weaning off Pramipexol slowly but need stronger relief than Gabapentin provides . RLS, low back/legs and neuropathy plague my health. My question can the oil be in capsule form because I don’t care for taste of cbd oil.

Whippetmama profile image
Whippetmama in reply to RWick

Yes. It will just take longer to work. The fastest way to get the effects in your system is vaping, followed by sub-lingual (which is how I take it)..

jjyankee profile image
jjyankee in reply to RWick

My oil has also helped a lot with neuropathy which is an added bonus-

Whippetmama profile image
Whippetmama in reply to jjyankee

Me, too. My feet were hypersensitive. Now I can go get a pedicure!

PottyDotty profile image
PottyDotty

I use the legal CBD oil in the UK and it has helped a bit. I would love to be able to access the stronger stuff, but doubt there is anywhere in the UK where that is available. I have been told a ratio of 2 to 1 is what is needed. (CBD to THC).

jjyankee profile image
jjyankee in reply to PottyDotty

2:1 is the the mix that works best for me as well

Marlayna profile image
Marlayna

Thank you for this thread. The pills of all types have too many side effects and I’m tired of arguing the case to docs that I really do have RLS and am not just a drug seeker. The benefit of small doses of Valium are wearing off and I don’t want to keep upping the dose. Since I have tinnitus, all the pharma drugs usually exacerbate it (just another small Hell in addition to RLS).

I’ve tried full spectrum CBD but maybe i didn’t take enough so have been planning to experiment with edibles next. I’d love to read more about edibles as far as types and amounts.

Whippetmama profile image
Whippetmama

Just a note -- it took about a week before I noticed the effect. During that time, I experimented with the dose. I was affected during the day, as well, so if you only have RLS at night, it may take you longer. And as I said earlier, if you are in Mexico or are planning a vacation here I can get some for you.

Barbee44 profile image
Barbee44

I have it was allergic to something in it and broke out in hives.

Whippetmama profile image
Whippetmama

Folks,. I cannot give any medical advice. I can only tell you what has worked for me. BTW, I have been using this for about 2+ months and two things I have noticed are that the oil is now working much, much faster now and I need tramadol less and less. The oil I use is RSO (Rick Simpson Oil) diluted to 30 mls and the carrier is grapeseed oil.

solticeart profile image
solticeart

HI, I have been using Kratom for my rls and it even stops my pain better than methadone does the downside is it only last 4 hours or if I wake up in the middle of the night I use a kratom extract so I can drink it ( you only sue a small amount so I can mix it with about an inch of juice and can drink that) and it works in 15 min but only last about 2 hours. Last night I wike up at 1 and 3. Thats not normal it seems my rls comes in waves if its not bad and the kratom capsules will work if I take 8 to 12 of them before bed ( I only need 8 caps during daytime every 4 to 6 hours which is around 2 teaspoons each but at night I need more for it to stop the RLS it seems) and I'm good for the night then some nights and it will usually happen a week a time it will be bad and Ill wake up every few hours and have to take more. it works fast though. I had bought some RSO in a syringe and it's a black tarry substance but I made a mistake and took a half f a pea-sized piece instead of rice sized and oh god I got so damn high I couldn't wait for it to wear off. This was before I had rls ( I got it after going off methadone and thats what I bought the RSO for because they told me it would help my fibro pain but after that, I have been afraid to take more. She told me to put it on an aspirin or some food so you don't taste it. So Does this RSO have CBD in it then? I'm willing to try a rice-sized piece at night I just do not want to get stoned from it. From what I read last night after reading your post you start with a rice-sized piece and go up from there a tiny bit at a time if you need more and you get used to it I guess. It would be really nice If I could only have to use kratom during the day ( even though I get rls during the day to its never as bad just a really irritating feeling in my feet which is usually where it starts. None of the meds except methadone or a strong pain med will work for my rls, in fact, it makes it worse and I'd rather not have to use a pharm drug because they are all so bad for you anyway) so I do have some CBD oil with low thc in it. I had bought 3 ampules of 100 mg of CBD in each one to add to a lotion so I'd be making my own CBD cream and it just mixed in coconut oil so I could eat it too. do I need to mix some with the RSO or does it already have enough CBD in it? I think its like 3% thc? I forget really I'd have to look at the package. If this would work I'd be thrilled because it was so cheap! If I only need a rice-sized piece it would last me weeks at 12 bucks a syringe.

Whippetmama profile image
Whippetmama in reply to solticeart

All I can tell you is that my oil is 1000 mgs RSO mixed with 30 mls of grapeseed oil. I take 1 ml. And I don't get high.

solticeart profile image
solticeart in reply to Whippetmama

Did you mix it yourself? I bought some pure cbd and it’s mixed with a small amount of coconut oil, I was thinking of mixing it with the rls. I looked at mine and it says it’s 68% thx and 13% cbd on it, so I can add in more cbd oil and mix them together. I’m going to look for a straight cbd though. The reason I bought this is to make my own lotions because it’s so much cheaper and I can use the lotion I like best.

Oh by the way. If your ever stung by a wasp or yellow jacket put cbd oil or lotion with cbd in it, on it right away and the pain stops almost instantly! I got stung on the hand last summer by a yellow jacket and so went in to run cold water on it and thought “ I wonder if the cbd would help” so I put it on it and was shocked when in a second the pain was gone! I wondered if it was a weird fluke but my aunt was stung a few days later and I said go put your cbd on it so she did and she was also amazed that it stopped the sting instantly! One crawled in my shirt and I got stung on the boob Last week and 2 days after that I was stung on the thigh! Somehow they got into my clothes I had draped over something in my bedroom. I figure they hitched a ride on the dog ( his bed is right next to where I had the clothes draped) then crawled someplace dark...right into my clothes. It’s still kind cool out so they are sluggish and can’t really fly well. Anyways try it!

Chicafromchitown profile image
Chicafromchitown

Whippetmama

I started using CBD Pure Hemp Oil 600 and on the back label it says

Full spectrum hem oil 1g

Canabidue (miss spell) 10mg

Is this oil good?

Whippetmama profile image
Whippetmama in reply to Chicafromchitown

If it works for you then it's good.

fchrist profile image
fchrist

I too have been doing the trial and error on thc/cbd. What I have found: Cbd is great for inflammation and anxiety, thc is supposed to be good for pain. However, we are all different and where your body chooses to uptake the cannabinoids is not up to you. Your body decides. Vaping high dose thc worked great for my RL but would exacerbate other pains and make me highly paranoid (uptake in the amygdala). CBD buffers that to some extent. CBD on its on didn't help me with restless leg but did calm my mind. For me, getting rid of RL was worth the other issues. I found I had to take it less and less. (Note: I don't take any other drugs for RL.) Now, 6 months into this, what I have found for me is I had to high dose the cbd (full spectrum from marijuana) for a week (20 mg tincture 2x daily) and then I found it was making me too groggy so I now take 5 mg am and 10 mg pm. Make sure it is an indica strain. RSO (Rick Simpson Oil) is usually cannatonic which is indica. I mix it with mct oil in a gel cap. It is the cheapest way to go. $24 for 3 weeks worth. I have RL maybe once every 5 days and when I do I take an edible and a puff of THC and I'm able to sleep.

If you can't get the full spectrum stuff, Premium Jane has some good quality hemp cbd. I really think the trick for some of us is to high dose in the beginning to saturate the receptors. It is a trial and error. But there are no side effects. Also, my son takes the Premium Jane gummies (no thc at all) for anxiety and he is urine tested for his job randomly and is fine. These along with L-Theanine (he drinks matcha tea 2x daily to get it) and he is a different person.

This is my experience, we are all different. But I am grateful I can try these things and see what works for me and my family.

nightdancer profile image
nightdancer in reply to fchrist

I am in the US, and in a state that has legalized marijuana across the board. :) CBD does nothing for me, but pot sure helps the anxiety and really is better than my sleep meds. :) It is a life saver!

fchrist profile image
fchrist

I guess I shouldn't say there are no side effects. It can make you groggy. But I figure that's what we all want at night ; )

nightdancer profile image
nightdancer in reply to fchrist

Exactly. I get kind of confused when people complain that things make them groggy at bedtime. THAT is the GOAL. LOL

Sara_2611 profile image
Sara_2611

Hi Whippetmama To be fair I think I'll stick to what is suitable for me

Whippetmama profile image
Whippetmama in reply to Sara_2611

That is all any of us can do

Milefulano profile image
Milefulano in reply to Whippetmama

I believe you are most likely 100% correct! So what I'm looking for is a sublingual Indica Rick Simpson oil. Is that correct?

Whippetmama profile image
Whippetmama in reply to Milefulano

A friend of mine is an issue old plant breeder and he says that there is so much interbreeding these days that most everything is a sativa blend

mmb8083 profile image
mmb8083 in reply to Milefulano

The price of RSO is outrageous

Sara_2611 profile image
Sara_2611 in reply to Whippetmama

Ok thanks for your reply

Milefulano profile image
Milefulano

OK. Thank you!

F_rls_N33D_H3LP profile image
F_rls_N33D_H3LP

Do you smoke it? Is there a certain brand or milligram or anything?

Sara_2611 profile image
Sara_2611

Hi Whippetmama

I think it would be best if I stick to what I know -the medication you are mentioning might not be suitable for me because Im on strong medication for epilepsy & blood pressure & there might be consequences. But thanks for the note

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