Cannabis works: Hi everyone it's been a... - Restless Legs Syn...

Restless Legs Syndrome

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Cannabis works

Paul007 profile image
151 Replies

Hi everyone it's been a long time since I last posted but I feel I have to share this. After 36 yrs living with RLS and trying almost every medication that we're all told to use I've finally found the one thing that stops my symptoms. It's cannabis, and although so many of you may judge me for it I can honestly say I have a great deal of quality of life back. I no longer dread going to bed. I'm actually getting to 8pm and thinking "I'll go and chill out in bed" something I haven't been able to do for most of my life. I'm not here to promote anything but had to share this. I dont take it recreationally and smoke literally just before bed. Although my symptoms can start at any time I'm literally only taking it to sleep. It doesn't actually help me fall to sleep but the pain and twitching has gone and for that I'm thankful.

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151 Replies
Suhavard profile image
Suhavard

That’s awesome. Did you get a medical Rx from your physician? I’m in the USA and it’s not legal in the state I live.

Paul007 profile image
Paul007 in reply to Suhavard

At first no but now I do receive medical marijuana. It's been life changing and again proves what this little plant is capable of

Arymretep profile image
Arymretep in reply to Paul007

H, good for you that cannabis has helped you, how did you get it , I thought it was illegal here in the U.K. ?

Joolsg profile image
Joolsg in reply to Arymretep

It was legalised in 2019. I've been on medical cannabis for 2 years.

Arymretep profile image
Arymretep in reply to Joolsg

Do you mind if I ask for what condition you are prescribed cannabis ?

Joolsg profile image
Joolsg in reply to Arymretep

RLS

Arymretep profile image
Arymretep in reply to Joolsg

I have severe RLS too , do you get it on the NHS ?

Joolsg profile image
Joolsg in reply to Arymretep

No. Medical cannabis is only available privately which is annoying as it's a very effective medicine.

Joolsg profile image
Joolsg in reply to Arymretep

It's very effective for pain as well and you would definitely get it on prescription. It costs me about £2 a day.

Arymretep profile image
Arymretep in reply to Joolsg

Thanks , so do you see a doctor privately then?

Joolsg profile image
Joolsg in reply to Arymretep

Use this link and you can book an appointment to see Dr Sunny Nayee. £49 for initial consultation and then you pay for the product. Your GP sends medical info on your condition and drugs you'vebeen taking and are currently taking.themedicalcannabisclinics.c...

Arymretep profile image
Arymretep in reply to Joolsg

Thanks so much, is it a video appointment, anything is worth trying , I also have Fibromyalgia which I’ve heard can also be helped by cannabis.

Joolsg profile image
Joolsg in reply to Arymretep

Yes video appointment. If you're on Twitter look up Jane Hinchcliff. She has fybromyalgia and was in a wheelchair. Cannabis has transformed her life. She's pain free. Out of her wheelchair and exercising.

Drls profile image
Drls in reply to Joolsg

Hello Joolsg I have been following the thread about the use of cannabis and I went on the medical cannabis website - but a few things about the set up worried me abd I wanted to check with you that it is a real bona fide organisation ….. for a start it asks for £49 up front which is always very worrying. I have severe rls - currently taking pregabalin and co-codamol - it’s not working that well! And following Paul’s recent post I am thinking that cannabis may be the answer - but how to access it ?!?! I would be grateful for any advice. D

(I was on roprinirole before but managed to get myself off of it! The augmentation was terrible )

Joolsg profile image
Joolsg in reply to Drls

It's a legitimate site. £49 is the reduced fee to have your first consultation.As cannabis is still only available privately in the UK we have to pay for Doctor appointment and then the product.

I use the medical cannabis clinic and they are very efficient.

In your case, as you were on Rop and augmented, pregabalin and gabapentin often don't work.

They didn't help my RLS at all. Only low dose opioids work for me. I'm very lucky that my GP agreed to prescribe low dose Buprenorphine when Oxycontin didn't help.

I started cannabis when the Oxycontin and pregabalin were not stopping my severe RLS. I only use it occasionally now.

Paul007 profile image
Paul007 in reply to Joolsg

How do get on with it? Does it stop the RLS symptoms

Joolsg profile image
Joolsg in reply to Paul007

I first used it illegally in 2016 when going through withdrawal from Ropinirole.I was suicidal and my adult children sourced cannabis. It literally saved my life, giving me 30 mins sleep after 5 days of constant, intense, all over body RLS.

Once through withdrawal, I tried tramadol and gabapentin but they didn't help. Then Oxycontin and pregabalin for 5 years but still had severe RLS.

I now use cannabis for sleep as it doesn't stop all the RLS completely.

I'm on low dose Buprenorphine (0.4mg) and it's the only thing thst covers my severe RLS.

I know that cannabis would completely work if I didn't have permanent damage from Ropinirole.

I tell everyone to use it if needed.

Paul007 profile image
Paul007 in reply to Joolsg

So glad to hear your having the same results as me. Opioids should never be the first choice medicine as it's so addictive and ruins your life. Thank you so much for the link and as soon as I'm back from holiday I'll be following it up

Joolsg profile image
Joolsg in reply to Paul007

Well, although cannabis really helped, it's not capable of controlling my very severe refractory RLS 24/7 so after 5 years on Oxycontin and pregabalin ( after augmentation and withdrawal on Ropinirole), I pushed for Buprenorphine after several other members reported it was the only thing that stopped their nightly RLS.It has been miraculous for me. I have slept 8 or 9 hours every night since July 2021.It's a synthetic opioid.

Opioids can also save many lives.

For those with severe RLS, who have failed all other drugs, low dose opioids are very useful.

Methadone and Buprenorphine in particular seem to be the 2 meds that help refractory RLS.

I direct people to Dr. Winkelman's opioid study, funded by rls.org. It shows that opioids at low dose are not addictive and people keep to the same low dose for years.

massgeneral.org/rls-registry

Bill33 profile image
Bill33

Same here Paul007

Paul007 profile image
Paul007 in reply to Bill33

Wish I'd done this year's ago

Amrob profile image
Amrob

That's great news Paul007. And you needn't worry about judgement...you're the one that has to live with RLS!

Paul007 profile image
Paul007 in reply to Amrob

I was worried about judgement from my wife but she says the same. Plus she's sleeping better nowadays because I'm not shaking all night. It honestly has been a game changer

ziggypiggy profile image
ziggypiggy

Excellent. No judgment here. It's a great medication for many. My doctor had me try it for a while with no luck. How long has it been working for you?

Paul007 profile image
Paul007 in reply to ziggypiggy

Since the first time I tried it. It doesn't help me fall to sleep but it does remove the horrible sensation and pain in my legs. For me it's doing enough

Goldy700 profile image
Goldy700 in reply to ziggypiggy

I am sorry it didn't work for you ziggypiggy - did you take the oil or the vape? For many CBD is not strong enough and they need the cannabis bud which is best vaped. It has an instant effect of creating a melting sensation through the body taking away that dreaded RLS feeling with the benefit of making you sleepy. You also need the right kind of cannabis ie Indica variety specially bred for its calming relaxing and pain relieving qualities.

in reply to Goldy700

Exactly. Indica is what you want and not sativa.

ziggypiggy profile image
ziggypiggy in reply to Goldy700

Yes. I've tried all the methods. Latest was vape pen 10% indica. I know the melting feeling well. Still have the RLS symptoms. Still didn't help me sleep. It also increases my anxiety if I vape bud. Ingestion has the least side effects but I'm just not getting the desired results. I'm happy it works for you. I know many people like you who have great outcomes.

Joolsg profile image
Joolsg in reply to ziggypiggy

Are you on dopaminergic drugs?

ziggypiggy profile image
ziggypiggy in reply to Joolsg

No.,

Joolsg profile image
Joolsg in reply to ziggypiggy

Cannabis can cause anxiety. I used to get panic attacks with it but since switching to Althea Oil with 20% ,THC, taken 2 hours before bed, I've fallen asleep by the time any 'high' happens & I don't get the anxiety.

ziggypiggy profile image
ziggypiggy in reply to Joolsg

Awesome. Yeah, I have a genetic disposition to anxiety and depression that stems from a personality disorder. So my thought patterns are deeply ingrained. In general cannabis tends to amplify any moods or thoughts I am having. In my late teens and early twenties using cannabis as a recreation drug was a positive experience. I used it as a replacement for alcohol because even back then I I could connect drinking to insane RLS symptoms. Later in life I as I tried cannabis many times as a treatment for depression, anxiety and sleep it more often just added to the problem. I now will only use it recreationally again as it is enjoyable in certain situations. For example, at concerts my friends have a few drinks and I'll will just enjoy a mild edible.

Josana13 profile image
Josana13

Hello, I am so happy for you. It'saQ like a miracle. Anyway I tried almost every strand for sleep with no results. Is to posible for you to send me the name or any info on the strand.

Paul007 profile image
Paul007 in reply to Josana13

I have no idea about what strand but I'll find out for you also. Also I don't use tobacco as that's a trigger for me. So it's just pure cannabis that I'm doing

Goldy700 profile image
Goldy700

Why should you feel judged - Cannabis is legal in most countries and people are increasingly waking up to the power of this wonderful medicine which is an extremely low addiction scale and very safe. I also find it works very well for me and I have not had to take any of the more insidious drugs that cause augmentation and a cascade of health problems.

Tharg profile image
Tharg

Glad that cannabis is giving some relief from The Demon for you, Paul007. Found the same myself - it is the only preparation which has an instant effect. Wish I could try it in a pharmaceutical quality pill but that's just impossible with the ridiculous NHS policy. (It is legal for some conditions but, according to one source, only three, yup three, prescriptions have been written since 2018). Personally cannot smoke it with tobacco. Even though I am a smoker, it is just so rough, Take it through a vaporiser and, even then, it is difficult - coughing fit usually follows. Certainly works though. I seriously do not like taking it - feeling more than a bit intoxicated is something I seriously dislike - but it'll instantly stop a really bad attack.

Paul007 profile image
Paul007 in reply to Tharg

I don't use tobacco just smoke it neat in a pipe. There is a guy in Ireland who makes his own oil which I'm interested in

Zyxx profile image
Zyxx in reply to Paul007

Lots of people do that. I’m in the Netherlands, so I don’t have to - that is to say, thc is illegal but I still get it from a simple website (zenoil.nl).

Irmajs profile image
Irmajs in reply to Tharg

Have you tried CBD? I have found that CBD helps calm my legs as long as I can get to sleep right away. THC helps me get to sleep faster. I take CBD capsules (don’t like the oil drops) 2 hrs before bed and THC gummy about 1 hr before bed. I don’t feel high, just relaxed. When I first tried THC they suggested I try RSO pen and I still felt out of it the next day. Didn’t like it. Military vets can get a substantial discount for CBD through Lazarus Naturals online. They also have a sleep capsule.

I agree. It's legal where I am and j use it and it does help. Good for you. No reason to judge. Better then narcotics and all the other drugs.

Paul007 profile image
Paul007 in reply to

Thank you and yes I agree it's better than all the rubbish these doctors keep throwing down our throats. Especially as they still don't what causes it

Barefoot78 profile image
Barefoot78

No judgement here just joy that you have relief. I am also interested in the details if you don't mind sharing them - strain name, method - vaping, edible, sublingual, etc.

Paul007 profile image
Paul007 in reply to Barefoot78

No idea about strain name but I don't vape or smoke tobacco as it's one of the triggers. I just grind a bit up and put it in my pipe. Takes around 3-4 puffs then I get in bed and actually relax without the fear of how bad my night will be

Pipe
Jjgajigahh profile image
Jjgajigahh in reply to Paul007

Would love to try Cannabis for RLS that has been driving me insane for years. My problem is, I don’t and have never smoked and don’t like the idea of smoking. Is the Oil any good?

Paul007 profile image
Paul007 in reply to Jjgajigahh

CBD oil isn't strong enough but there are people who turn cannabis into an oil without taking anything out of it. I don't use tobacco just smoke it neat so maybe that would help

David7 profile image
David7 in reply to Paul007

There are many capsules of THC/CBD combinations here in the states if you don't want to smoke or vape. One is called Midnight for sleep.Best if luck.

David7

SueJohnson profile image
SueJohnson in reply to Jjgajigahh

Have you tried any medicines for your RLS? Have you had your ferritin checked?

Paul007 profile image
Paul007 in reply to SueJohnson

The medicines are the problem. And I've never heard of one that completely suppresses the symptoms of RLS.

SueJohnson profile image
SueJohnson in reply to Paul007

I take 1500 mg of gabapentin and it completely controls my symptoms. Have you had your ferritin checked? Improving it to 100 helps 60% of people with RLS and in some cases completely eliminates their symptoms.

Paul007 profile image
Paul007 in reply to SueJohnson

Gabapentin never worked for me and yes i had my ferritin levels checked a few years ago. I was also under a neurologist for many years in Londons UCLH hospital and went through multiple different treatments all of which didn't work. I pray for anyone using opioids to relieve the symptoms as opioids are a horrible way of life

SueJohnson profile image
SueJohnson in reply to Paul007

How much gabapentin were you on?

Paul007 profile image
Paul007 in reply to SueJohnson

I honestly can't remember how much I was on sorry. I know RLS sufferers who claim gabapentin worsens their symptoms

SueJohnson profile image
SueJohnson in reply to Paul007

Gabapentin can NOT worsen symptoms. There are other possibilities for why their symptoms got worse. They may have been coming off a dopamine agonist. They might have started a medicine or OTC supplement that causes RLS symptoms to get worse. There may have been triggers that caused it. All kinds of reasons. As far as gabapentin didn't work for you, it may have been because you didn't take enough. Many people think it doesn't work for this reason.

Paul007 profile image
Paul007 in reply to SueJohnson

Gabapentin doesn't work for everyone that's one of the harsh realities with this condition. That's why many of us have used multiple different medicines.

SueJohnson profile image
SueJohnson in reply to Paul007

That's certainly true but as I mentioned above, many people give up because they didn't take enough. The main reason gabapentin doesn't work is because after many years on a dopamine agonist a person may have permanent damage to the dopamine receptors.

Paul007 profile image
Paul007 in reply to SueJohnson

Taking 1500 mg of gabapentin is no way to live. That's a really high dosage and personally I wouldn't like the after effects of that dosage. I get absolutely no hangover from Cannabis

SueJohnson profile image
SueJohnson in reply to Paul007

it's a fine way to live if it controls one's symptoms as it does for me and I have no after effects nor hangover nor do most people. Some do have side effects they can't live with. It is not a high dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." The maximum is 3600 mg. But it certainly is up to you and I am glad for you that you are happy with cannabis.

Josana13 profile image
Josana13 in reply to Paul007

I agree. I am withdrawing from Pramipexole due to augmentation. Does anyone know what Helps? My feet kick, not my legs. Anytime I lie down they start up and I have to keep walking. Too many years of this s$#t. Can't wait till life is over and I can rest.

SueJohnson profile image
SueJohnson in reply to Josana13

If you want to try gabapentin I can give you some advice and the best way to take it.

Josana13 profile image
Josana13 in reply to SueJohnson

Definitely. Thank you

SueJohnson profile image
SueJohnson in reply to Josana13

Beginning dose of gabapentin is usually 300 mg or 100 mg if you are over the age of 65. It will take 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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 at

Https://mayoclinicproceedings.org/a...

Josana13 profile image
Josana13 in reply to SueJohnson

Thank you. What are the side affects? I was taking 600 mg total and couldn't sleep, head in a fog, diarrhea, stomach cramps, anxiety. I haven't slept for three days and yesterday I just wanted to die so I could rest.

SueJohnson profile image
SueJohnson in reply to Josana13

Are you already taking gabapentin? It sounds like withdrawal from the pramipexole. I would back up to the last higher dose and reduce more slowly or by a smaller amount, cutting the pills if necessary. Also will your doctor prescribe a low dose opioid to use temporarily?

Josana13 profile image
Josana13 in reply to SueJohnson

I started at 1.5 mg several months ago and am dow to 0.012 mg. I was on 0.025 mg for 4 weeks and reduced to 0.012 mg. Do u think I went down to fast. This is my third night of one hour of sleep.

SueJohnson profile image
SueJohnson in reply to Josana13

With the symptoms you are having, yes you are going down too fast. Will your doctor prescribe a low dose opioid to help you?

Josana13 profile image
Josana13 in reply to SueJohnson

Thank u for the advice on Prami. I am going back up to 0.025 mg and reduce slower. I am on oxy for back surgery. I was prescribed Gabapentin 600mg 3x daily. Are u only taking 600mg in evening?

SueJohnson profile image
SueJohnson in reply to Josana13

yes Are you still taking gabapentin?

Josana13 profile image
Josana13 in reply to SueJohnson

Yes it was prescribed 600 mg x 3 . Is it OK to take with prami?

SueJohnson profile image
SueJohnson in reply to Josana13

Yes - don't increase it though until you have been off pramipexole for a few weeks and at that point you will probably just need it at night unless before you were on pramipexole you had RLS during the day. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

SueJohnson profile image
SueJohnson in reply to Josana13

If you are taking gabapentin, some of the things you are experiencing could be side effects from gabapentin - brain fog and diarrhea but should disapear or lessen within a few weeks. Gabapentin helps anxiety and sleep but are common withdrawal symptoms from pramipexole.

Josana13 profile image
Josana13 in reply to SueJohnson

What level of ferritin helps with RLS

SueJohnson profile image
SueJohnson in reply to Josana13

100 or more.

SueJohnson profile image
SueJohnson in reply to SueJohnson

Have you had yours tested?

Josana13 profile image
Josana13 in reply to SueJohnson

Sorry, just saw this. I had mine tested and it was low. I think they gave me an infusion of Ferritin. And prescribed vitamin D.

marsha2306 profile image
marsha2306 in reply to Jjgajigahh

I take a medical marijuana gummy when I’m in bed and my legs start up. I fall asleep within a half hour and sleep through the night. 20 mg cbd/10 mg thc

Joolsg profile image
Joolsg in reply to Jjgajigahh

You can get lotsof cannabis oil varieties with THC on prescription . I have Althea and Noidecs.

Guitarpickin profile image
Guitarpickin in reply to Jjgajigahh

I also won’t smoke anything. The tinctures and oils can be very potent but I’m not a fan of them. They burn my throat and it’s a sensation that lasts for hours. So even if my legs aren’t bugging me, my throat will be. Lol I love edibles! Not recreationally as I don’t like how marijuana makes me feel—except when I take it for ending RLS and trying to go to sleep. You can also just eat the buds. My step kids make fun of me for this but I don’t see the difference between grinding it up and putting it on a pizza like they do in Cambodia, or baking it into things like they do in the US (and elsewhere, I’m sure). I sorta like the flavor, I’m not getting excess calories, and I am getting fiber! The thing about edibles of any kind (including tinctures), you don’t feel them immediately like you do with smoking. So you need to plan ahead. And learn what amount is right for you so you don’t overdo it.

Zyxx profile image
Zyxx in reply to Jjgajigahh

I take thc oil (though I sleep fine on s-adenosy-methionine, too) but you can also put it in tea and you can bake it in cake. Called space cake…

TeddiJ profile image
TeddiJ in reply to Zyxx

Hi, Zyxx. How much oil do you take, if you can quantify it? Does that last for the whole night then?

I tried an oil pen syringe indica 73% THC earlier this week. I woke up with more RLS at 3 a.m. and did a dab more oil. 2 nights of that and the 3rd day i could barely walk or talk or type-for about 20 hours from that last 3 a.m. dose.

I felt terrible and do not want to repeat this, obviously! I felt dope sick or it was an OD or something.

Thanks for your input!

Zyxx profile image
Zyxx in reply to TeddiJ

Oh goodness, yes, taking it several times in the night would do me in, too…..I began taking 1 small drop (bottle of oil with dropper - I don’t know the thc percentage) together with a drop of CBN oil. That’s also marihuana oil, said to be good for sleep. I don’t know if it is. I just always take them together.After some months I needed 2 drops of both per night. I spoke to a man who only “graduated” to 3 drops of thc, for sleep, after 5 years. I always seem to get inured to substances faster.

I go to bed early. If I go to bed too late, the thc seems to work less well. It takes about an hour to kick in, anyway. If it’s too late at night I don’t sleep, that’s why I go to bed early.

Right now I’m doing ok. I had the worst RLS when I was on paroxetine. Night and day, all body. Fun times.

TeddiJ profile image
TeddiJ in reply to Zyxx

Thanks so much for the info and glad you are doing relatively well now. Sorry you had that awful RLS-it is beyond torture.

Maybe I shouldn't describe what I took as an oil, now that you've written. It is like a pen/syringe combined, kind of.

It is obviously strong but also not quite strong enough to last 8 hours...?! Or maybe i need to go to bed earlier, as you describe.

Take care!

Zyxx profile image
Zyxx in reply to TeddiJ

Good luck, Teddi!

TeddiJ profile image
TeddiJ in reply to Zyxx

Thanks, Zyxx!

Josana13 profile image
Josana13 in reply to Jjgajigahh

The edibles are excellent, if you get the proper one. Use for three days and off for three to get the best results.

Barefoot78 profile image
Barefoot78

ok, thanks...good for you. I am trying to find a cannabis tincture I can take a liquid drop or two under the tongue before bed...different brands, different strains, so many choices. I do not smoke either.

TeddiJ profile image
TeddiJ in reply to Barefoot78

Hi. I don't smoke and tried a kind of syringe pen this past week (see above). It works for RLS although I am struggling with the dose.

I would say try indica in any brand. Just start with very little until you know how you will react.

Also, make sure it has THC in it as I made that mistake when I first started trying my local pot shop-some things say indica but there is no percentage of THC listed.

Hope this helps!

Drls profile image
Drls

Paul, that sounds amazing….I’m in the uk too and currently taking pregabalin - but it’s becoming less effective and less effective and Is affecting my life quite considerably….where do you get it from? Do you only need to take it once a night? And have you come off all other medication? Please message me with info!!!

Paul007 profile image
Paul007 in reply to Drls

I've come off everything and will never go back. Cannabis truly works for me but I don't use tobacco just smoke it neat. It doesn't help me fall asleep I'm still terrible at that part but the pain and twitching and horrible sensation has gone. My body can finally relax

RestlessC profile image
RestlessC in reply to Paul007

So, smoking it “neat” as you say, is that any less hard on the lungs? If I recall, I think you use a pipe, right? I can see the advantage, I guess. The cannabis is more concentrated, and you’re not getting hooked on nicotine at the same time, but if my problem is getting it he 💨 in, keeping it in, and not feeling like it’s just burning a great big hole in my lungs, then am I correct in thinking that smoking it “neat” is not going to be any easier for me?

Paul007 profile image
Paul007 in reply to RestlessC

Yes I smoke it neat. To be honest it is uncomfortable at first but now it's really easy. Last night I drank coffee which is a huge trigger for me and I couldn't even sit on my couch due to my legs doing the Riverdance. So I smoked my magical plant and felt total relief. I honestly can't praise it enough. If you suffer badly and want some quality of life back I'd really give it a go. The meds we all take for this curse are really damaging.

SueJohnson profile image
SueJohnson in reply to Drls

How much pregabalin are you taking?

Drls profile image
Drls in reply to SueJohnson

Hi sue 300mg they won’t give me any more and that’s fine because it freezes my legs and affects my walking

Paul007 profile image
Paul007 in reply to Drls

It's horrible stuff. I was on it for 2 yrs and I'll never take it again

SueJohnson profile image
SueJohnson in reply to Drls

You might try switching to gabapentin. Although they are basically the same, sometimes the side effects of one don't appear when they are switched. The equivalent dose of gabapentin would be 1800 mg. If you switch take 600 mg 1-2 hours before bedtime then 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg, and then 600 mg 6 hours before bedtime. If you take magnesium take it at least 2 hours before the gabapentin as it interferes with the absorption of gabapentin.

Josana13 profile image
Josana13 in reply to Drls

What do you mean by freezing your legs? I wake up at between 4 and 5 am and my feet feel like their frostbitten or on fire. Have to put pressure on them and take oxy

SueJohnson profile image
SueJohnson in reply to Drls

Have you had your ferritin checked? Improving it to 100 helps 60% of people with RLS and in some cases completely eliminates their symptoms. Also another medicine to try is dipyridamole. For some people it completely eliminates their symptoms. You might ask your doctor about it. Nothing ventured, nothing gained.

Paul007 profile image
Paul007 in reply to SueJohnson

Dipyridamole is one I've never tried.

Guitarpickin profile image
Guitarpickin in reply to Paul007

Luckily you may never have to! With THC working like it does for you, stick with that! It’s the most benign medicine of the bunch! So happy you’ve found such relief!!

Drls profile image
Drls in reply to SueJohnson

Hi sue my ferritin was 120 so sadly can’t do anything there thanks fir the jnfo

Joolsg profile image
Joolsg in reply to Drls

themedicalcannabisclinics.c... consultation £49. Ask for Dr Sunny Nayee in the Pain clinic. He knows it helps RLS which is a neurological disease.

Hope61 profile image
Hope61

That is amazing good for you !!!"Judge not for you are just a mere human"

Ajaxandme profile image
Ajaxandme

I find a delta 8 gummy ( which you can legally buy in most states here in US- just a quick google search will give many options), about 30-40 min before bed really helps. I place desired amount under tongue and let it ‘melt’. We also use THC gummies as needed for our son with autism. Only need small amount.

It really helps calm his nervous system when he’s stressed 👍

grassgree profile image
grassgree in reply to Ajaxandme

The problem is that you don't know what you're getting in these delta 8 gummies, as they aren't regulated. Read more here;fda.gov/consumers/consumer-...

Ajaxandme profile image
Ajaxandme in reply to grassgree

True. You make a good point. However, so far, it’s been a real help to me! Please also remember most vitamins/ supplements are not regulated by the FDA, either. I can only look for companies that provide certificates of authenticity/testing and hope they are being honest.

grassgree profile image
grassgree in reply to Ajaxandme

Yes, that's true. I'm glad for the information.

grassgree profile image
grassgree in reply to Ajaxandme

If you don't mind me asking--what brand do you use, and which certificates do you trust?

Ajaxandme profile image
Ajaxandme in reply to grassgree

Right now I’ve got The brand ‘Koi’ and the brand ‘Premium Jane’ in my fridge ( I don’t think they need to be refrigerated, but I’ve heard delta 8 doesn’t like heat, so 🤷🏼‍♀️)There was another brand from Colorado but I forget the name - there are so many now!

I tend to look for sales, and if the company seems legit, I try. These things aren’t cheap. Worth it, imo. But not against saving some $$ if I can.

Guitarpickin profile image
Guitarpickin in reply to Ajaxandme

I second the vote for Premium Jane. They seem like a very good company (if we can believe their marketing-which I do, but I believe anything unless I have a reason not to. Lol). I can’t get their Delta 8 products in my state but I had wanted to try them. So without being able to get those, I don’t buy from them because everything else is basically CBD only and I definitely need THC for RLS.

Guitarpickin profile image
Guitarpickin in reply to grassgree

This is my neurologist’s complaint with edibles too, however I have been delighted with how uniform they seem to be. Strength may vary between brands, but once you find a brand you like, the results seem pretty consistent.

Paul007 profile image
Paul007 in reply to Ajaxandme

I believe the THC is the part that helps

LanaCSR profile image
LanaCSR

OMG absolutely No judgment from me!! I am so happy for you that you have found what works for you! I only wish it was available where I live....😕

Paul007 profile image
Paul007 in reply to LanaCSR

I'm UK and sometimes you have to do what works even if it's illegal

LanaCSR profile image
LanaCSR in reply to Paul007

It's just a shame it's not legal everywhere.

Paul007 profile image
Paul007 in reply to LanaCSR

I totally agree but I got it anyway. These pharmaceutical companies will never want you to go down the natural route of cannabis. I'm UK and it's illegal here but if it works and gives me some quality of life back I'll do it

LanaCSR profile image
LanaCSR in reply to Paul007

I'm in the US and it's only legal in certain states. How much sense does that make? Ridiculous!!

Paul007 profile image
Paul007 in reply to LanaCSR

That is crazy. The UK still won't legalise it. The medical marijuana has alot of the THC taken out and I believe that's the ingredient that helps

LanaCSR profile image
LanaCSR in reply to Paul007

I have heard that, too! Because I have tried CBD oil (which IS legal), but it does nothing for me...*sigh*

Joolsg profile image
Joolsg in reply to Paul007

Paul, I'm delighted cannabis is helping. The cannabis in the UK from legal medical clinics definitely has THC. I have 2 oils, one that's 20% THC, the other is 26% THC. My friends have flower. All different varieties and stengths.For RLS, Indica strains are best.

The medical cannabis may be more expensive than street cannabis but at least we can be sure it's indica and not contaminated with anything else.

I've done a few interviews on medical cannabis.

Joolsg profile image
Joolsg in reply to Paul007

Paul, it's legal in the UK. I've taken it for RLS.themedicalcannabisclinics.c...

Zyxx profile image
Zyxx in reply to Paul007

The thoroughly immoral thing is that marihuana isn’t legal…

BocaMom profile image
BocaMom

No judgment here either, and I’m very happy for you!

Unfortunately cannabis gives me severe paranoia and heart racing - think this is a gene related issue. Nobody really knows until they try it. I went to the time and trouble of getting a legal card (in the US) and it was basically worthless for me. Have tried multiple strains too.

That being said - you have found the key for you! That’s awesome!! So glad for relief from suffering.

Zyxx profile image
Zyxx in reply to BocaMom

Sure you didn’t take too much? If I take even a little too much thc I get bad, bad fears. But not from a little bit.

BocaMom profile image
BocaMom in reply to Zyxx

I suppose it's possible, though I thought I was starting with a very small dose.

Zyxx profile image
Zyxx in reply to BocaMom

Ah well. It’s scary, isn’t it, if it goes badly. Right now I manage to sleep without thc, which is better

Whippetmama profile image
Whippetmama

I've been using cannabis for a few years to help control my RLS, too. But I find it works best for me with tramadol. Sleepless nights are a rarity now for me. And yes, THC is the magic component. For anyone curious why, Google Entourage Effect. Also, for the suffers in the UK, there is this: cannabis healthnews.co.uk/2021/08/11its-perfect-torture-restless-legs-syndrome-cannabis-and-sleep/

Ciduoc profile image
Ciduoc

I agree. I use cannibus gummies.

Whippetmama profile image
Whippetmama

Sorry - the link was truncated. It should be aitch tee tee pee ess://

Drls profile image
Drls in reply to Whippetmama

Hello could you give me the full link to that article you quoted, I am starting to access medical cannabis from a clinic near to me however rls is not a condition on their list …. Thank you! D

lorri214 profile image
lorri214

That is great news. I recently got a medical marijuana card. I purchased "grape ape" oil and the prefilled cartridge. I was so hopeful. However, I tried the oils. Kept uping it until I felt something. My rls didn't go away. Maybe slightly better. I was very dizzy and felt strange. Didn't like it I tried vaping with the cartridge. I couldn't stop coughing. It didn't do much. Maybe I have the wrong strain?? I am so disappointed. I have to go back and purchase a different strain and maybe that will help??? The only problem is the coughing. Maybe because I never smoked. Any suggestions???

Paul007 profile image
Paul007 in reply to lorri214

I smoke it neat without tobacco. It is quite smooth

Guitarpickin profile image
Guitarpickin in reply to lorri214

I always cough from inhaling it too. Try edibles! Just give yourself a little more time because they take 30-60 min to kick in. And I also get dizzy from it, which is why I like to try to be in bed, waiting for it to kick in.

lorri214 profile image
lorri214 in reply to Guitarpickin

I asked for the gummies. The place told me they do not sell them. I have the oil . I used the dropper. I kept increasing it. When I got almost to the top of the dropper I was so dizzy and felt so weird. However my rls did not go away. I did not like the feeling. I am going to try a different strain. I have "grape ape" now (the nighttime strain).

Guitarpickin profile image
Guitarpickin in reply to lorri214

Ugh. I’m sorry you first experience was weird and not very good. But I’m glad you aren’t giving up and I’m glad you have a new nighttime one to try. It’s odd the place you went didn’t have gummies. I struggle with dropper application too and taking it that way really irritates my throat too. I’m sure it’s not for everyone, but I will say that the terrible dizziness subsided over time. Or maybe I’m just better at taking it now. Meaning I try hard not to have to walk around or be predicting in any way by the time I anticipate it will begin to work. Good luck tonight. I hope the grape flavor is good and that the product doesn’t bother you in any way. Hoping for a good night of restful sleep for you!

omyjimmylegs profile image
omyjimmylegs

yep. I mostly use tincture, but also make butter to use in cookies, etc . It's a medicine, and I treat it as such. btw, I'm in Ohio and have a card. I wouldn't trust buying it off the street

Qalba profile image
Qalba

Two drops of THC before bed helps me so much with RLS and insomnia. It might stop all the RLS symptoms if I used more but I am careful with anything I put in my body!

K2D2 profile image
K2D2

So happy and pleased to know that you and others have found something that helps you. What a relief!

ziggypiggy profile image
ziggypiggy

I think we all need to remember the end goal is relief from RLS. When an individual finds something that works for them we can't wait to share the good news with those who understand and shout It from the mountain tops. It's natural human behavior. I did the same thing when I found relief. By now it's clear their are numerous ways to get relief. Let's not judge or shame anyone for their medication of choice. We all can do an extensive internet search for the upside or downside of any substance in existence.

kelirock profile image
kelirock

Same here Paul007, I discovered cannabis about a year or so ago and I only take it, like you at night when RL symptoms start and I like you, tried conventional prescribed medications which continually caused trouble for me by augmenting. I am now 74 and started smoking cannabis last year so at 73 had never smoked it before but I am so grateful for it now.

Paul007 profile image
Paul007 in reply to kelirock

It's life changing but I do still struggle to fall asleep but the symptoms have gone so I'll take it lol.

Muftah36 profile image
Muftah36

That’s great. It’s such a relief to finally find something that gives you back some quality of life. Unfortunately for me , it does nothing for my RLS, and I wish it would cause I can go to my grocery store or other outlet and just buy it. When you find something that works for you , enjoy the relief it gives you. No apology needed. Best of luck with that

Zyxx profile image
Zyxx

I cannot imagine why anyone would judge you for taking cannabis. Recreationally, too. It’s a damn sight smarter than taking augmenting drugs (I don’t judge that, either. We do what we can.)

Guitarpickin profile image
Guitarpickin

Hi Paul007. You mentioned cannabis doesn’t help you sleep. I assume you’re using indica vs sativa already, but have you tried getting one with CBN? It’s the cannabinoid that promotes sleep. I find it helpful. They also offer a lot of products with added melatonin, which I avoided for years based on things I read on this site. But I wish I had done my own experimentation because I got insomnia a month or so ago and was desperate enough to try melatonin, despite the warnings from people in this forum. It worked great and did not impact my RLS at night. I took it nightly for a week straight (to get through the bout of insomnia) and never had an issue. It’s probably not something I’d want to take indefinitely, but I’m grateful to know it works for me now. But I do use indica THC gummies with CBN regularly and almost never have a problem falling asleep anymore. Just an idea for folks with insomnia and RLS.

Nikos64 profile image
Nikos64

I have RLS and tried cannabis as edibles since they are legal in my state. For me, edibles didn’t work. They got me high and I had RLS which was not pleasant. I’ve read that smoking it is effective for RLS but I’d rather not do that.

Paul007 profile image
Paul007 in reply to Nikos64

Within 3-5 minutes of smoking it my whole body relaxes. I don't use tobacco just smoke it neat

I live in a medical cannabis state in the USA. I have tried many cbd and thc products to help alleviate RLS. Although I never found one that controlled RLS, I have found one that has improved my ability to fall asleep and stay asleep for several hours at a time. The product is called Gogi OG and is a hybrid of Nepali OG and Snow Lotus. I have been using it over the past year to help with insomnia, not RLS. My RLS is currently controlled very well with a low oxalate eating plan. I hope this helps somebody.

Amrob profile image
Amrob in reply to

Can you tell us more about how you manage your RLS with a low oxalate diet? Perhaps as the subject of a separate post so it will be more visible. A couple of others on this forum have had success with a similar diet.

in reply to Amrob

Hi Amrob. I will work on that!

spencertroy222 profile image
spencertroy222

I found I would take 900mg of gabapentin as soon as I felt RLS setting in. 30-40mins it had gone completely. Only draw back was Gabapentin totally wiped out my short term memory. Definitely Gabapentin worked. Because of catastrophic memory loss I had to stop taking Gabapentin. However, I am now on Pramiprexole which seems to just about work 90% of the time.

Paul007 profile image
Paul007

No side effects with cannabis for me. I been on gabapentin and pramiprexole in the past and hated how it made me feel. I'll never go back to meds

Memmy profile image
Memmy

My goodness, why would anyone judge you for finding something that stops the dreaded feeling. I'd like to try it but I just cannot smoke it. I'm very happy for you

Paul007 profile image
Paul007 in reply to Memmy

Smoking it is a struggle but it's really working

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