Success with CBD: I have been a chronic... - Restless Legs Syn...

Restless Legs Syndrome

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Success with CBD

Neverache profile image
16 Replies

I have been a chronic pain medical marijuana patient for eight months. Up to this point I had mostly experimented with the THC products with limited success. A week ago I bought CBD tablets - 50 mg ER and 100 mg IR and have been RLS free for the first time in twelve years. My RLS, while predominantly in the legs, is full body and brutally present 23 hours a day even though I am on Fentanyl 75 mcg. I cried tears of joy a week ago when I was able to enjoy lying down for the first time in a decade. Now I am crying tears of despair because I cannot afford the $40/day that I would need to continue with it. The cost of $40 is in the State of Connecticut. Prices are better out west.

Note on CBD: In order for CBD to be effective, it has to have small amounts of THC present. This means that in the States, you have to get it from a medical or recreational program. You cannot buy the CBD oils on sale on the Internet because they will not have the THC in them and will be a waste of money. Also note that even though the CBD has THC in it, it does not feel make you feel high in the slightest because CBD suppresses the effects of THC.

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Neverache profile image
Neverache
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16 Replies
Madlegs1 profile image
Madlegs1

Thanks for the informative post, first time I have seen it explained so clearly.

I'm surprised the Fentanyl isn't suppressing the rls.

What other meds are you on?

Hoping you can obtain your tablets at a more economical price.

Good luck.

It was good to hear the CBD tabs worked and sorry you cant afford them on a regular basis. $40 a day is a lot of money. Would it be illegal to get them from the west and delivered to you where you live. ? Both states would have legal mj ? Or do you have to show your card or whatever it is, to buy them.

moonhunt18 profile image
moonhunt18 in reply to

I think, but may be wrong, that it’s illegal to mail CBD. But man. $40 a day is absurd and completely unfair! I pray OP has luck finding a fix for this.

in reply to moonhunt18

You are probably right, mailing them would not be a good idea, when i thought about it. :)

Mona23 profile image
Mona23 in reply to

I’m not so sure it would be a problem - a simple call to the USPO would get the answer. Since people can’t get it in every state they might travel to, I would think there is some way of sending it.

Neverache profile image
Neverache in reply to Mona23

Hi Mona. It is a problem, unfortunately. Medical marijuana is not federally legal. Is it only legal in certain states. Under the law, you must consume anything you buy in the state in which you purchase it. It is illegal to cross border into another state with these products - as soon as they are carried or shipped over state lines, you are in risky territory. You learn all these rules when you become a patient.

If attempting to mail, it should never be done through USPS. They scan all packages and are government. It is better to ship UPS overnight.

Mona23 profile image
Mona23 in reply to Neverache

Thank you for all that information. I’m brand new to the world of CBD!

Parminter profile image
Parminter

Can you explain what 50 mg ER means?

Where I am one can only get (illegal) tinctures etcetera. I did not know there were tablets.

I don't give a fig about the illegal bit, and I have quite a few varieties, but none has helped except with anxiety.

So how much pure CBD (plus THC) are you taking per day?

And yes, whichever way you do it, it is not cheap.

Except - I have seeds and am going to grow my own. Then it's the cheapest med on the planet.

Which is what all those draconian laws are about - money.

Lash65 profile image
Lash65 in reply to Parminter

Yep, you are correct.

Whippetmama profile image
Whippetmama

It would be less expensive to hop a plane and fly to Colorado or CA and stock up, no?

NoMoRLS profile image
NoMoRLS

The cbd/the vapor pens and cartridges work well. 1 cartridge lasts me up to a month. I have 1 vapor pen with high CBD/low THC and another almost straight thc in case I've overdone it. But they last a long time.

Neverache profile image
Neverache

Thanks for the comments and support. I’ll try to answer all the questions.

CBD 50 ER is 50 mg of CBD extended release formula and CBD 100 IR is 100 mg instant release (this is like any standard non-extended release pill). I threw out the bottles already so I don’t know how much THC was in them, but the amount is small. I will be buying again in a few weeks and will let you know.

What worked for me perfectly was to take 1) an extended release when I first woke up, 2) an extended release at 4:00 in the afternoon and 3) the 100 right before bed. I feel a rush of calm and relaxation after taking the 100 and sleep came easy for this life-long insomniac. This adds up to 200 mg/day.

I also have CBD and THC vape products. I will also get a similar feeling of reduced anxiety and calmness when I take a vape that is a CBD/indica hybrid, but it is fleeting and does not arrest the muscle spasms and leg pain in the same way. I’ve tried overdoing it with the CBD vape where I take ten hits at a time and repeat every half an hour and it still only partially helps.

It is illegal to mail it, but a lot of people do and never have a problem with it. I was in Oregon last summer and bought recreational marijuana. The guy behind the counter said he wished he could sell me the medical products. I settled on a CBD Taffy that also had the same effect as the CBD tablets and cost $15 for a day’s supply. I also found an incredible CBD pain stick in Washington that would help the legs when directly applied to them. Each of those had .3% THC.

I am thinking of doing a trip to CA, OR and WA in September and do plan to buy some to return home, but this is illegal too. If you get caught, they pretty much just throw out and don’t arrest, but it makes me nervous to spend all this money on something that could end up in the trash. Oh, while in CA I plan to attend the RLS Symposium: rls.org/get-involved/18symp.... My doctor is one of the speakers. Is anyone else going?

The Fentanyl does help the RLS some. In fact, I am free of it for a month after each dosage increase, but then the RLS starts always creeping back. Without Fentanyl, I lose my mind to the RLS - I have to in motion 24 hours a day. I take the antidepressant Nardil which is infamous for what it does to the legs and I had bad RLS before I started it. But it is not possible for me not to take it.

I think I have answered all the questions. I have to run to an appointment now. Will answer any later that I skipped.

Mona23 profile image
Mona23

Thank you for explaining what’s working for you. How long did it take to get an effect? I’ve just started experimenting with CBD. I have a CBD/THC cream that works well on the symptoms in my thighs and bicep area whenever they show up, but is fairly short-lived (a few hours ); and I have a “puck” - round gummy ‘candy’ - that I take whenever I want to - doesn’t seem to do much but tastes good. I also have a 250mgCBD/25.25 mg tincture that I take, 3 or more ml/day. All are the products are Indica strain. I’m not seeing as much relief as any RLS sufferer of 39 years hopes for, and have read elsewhere that it took several weeks for some people to see significant improvement. Anyone have thoughts on that? (I’ve already done every supplement and homeopathic thing I’ve heard of, and have been on Mirapex for 20+ years. Now up to .5x3/day (down from 4 due to vein work). It doesn’t do too much anymore, but it usually does get me to sleep.

Neverache profile image
Neverache in reply to Mona23

The tablets start working in under an hour, probably closer to 30 minutes. You say you take 3 or more ml/day of your CBD tincture. If the whole bottle is 250 mg, how many milligrams are in 3ml?

What I have discovered is that I need really a high dosage of CBD to tame this devil. Prior to finding pills, I used a great CBD/indica vape cartridge that helped relax me, but would not help with the RLS symptoms. The cartridge of 300 mg would last a month. The RLS only surrendered when it was fed 200 mg/day with the tablets. That means I would have to finish the cartridge in 1.5 days and I can’t put that much into my lungs.

I fear the 3 ml simply isn’t strong enough for you.

I am buying more tablets on Monday.

Mona23 profile image
Mona23 in reply to Neverache

Thank you - I’m here to read about other people’s experiences so I can hopefully make some adjustments. The benefit I get is pretty quick, from the cream especially, but I think you’re right - I need a higher concentration of CBD in the tincture. If it’s going to work - my RLS has been worse at night with the CBD (3rd nihgt of very poor sleep), even though I continue to take Mirapex as prescribed. I thought I had read somewhere that it can take a couple of weeks before the benefits of CBD really kick in. Any comment on that?

Its an education to read all the comments on all the CBD and other stuff you can try out in the States. I have tried CBD oil but of course in the UK the THC is illegal , so no THC in the oil, and i tried it for several weeks in the hope it might work after a while, no such luck. ! :P

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