Cannabis and Buprenorphine for Severe RLS.

[Joolsg]

I attach an article by Cannabis Health News. I agreed to do the interview and a video to raise awareness of RLS amongst the public and the medical profession. I've forwarded it to my neurologists and doctors. I'll post separately about how miraculous Buprenorphine has been for me. It's been shared widely on Twitter and Instagram. Any news is good news!

cannabishealthnews.co.uk/20...

[Spurdog1]

My heart goes out to you, your kindness in exploring new avenues, and hugely pleased for the benefits you now reap.

[Joolsg in reply to Spurdog1]

Thanks so much. I just hope others with very severe RLS, like Shumbah and me, can benefit from Buprenorphine or methadone. X

[Spurdog1 in reply to Joolsg]

That pleases me Jools, I wanted you to know I can only empathise, without any form of patronising, or offence in any way.

[LotteM]

Nice article! I am in awe in hoe you got this organised. I know from what you have written before that you are open-minded and carefully daring. And even before you found your current effective treatment, you have shared your knowledge and experiences and organised various campaigns and other activities to raise awareness, like acting as a guinea pig for med students. We need people like you. Thanks for your time and effort. And long may this treatment last for you. Very long.

[Joolsg in reply to LotteM]

😍

[involuntarydancer in reply to LotteM]

I second everything said here and have no doubt that you are speaking for many, many sufferers on here who have been helped by Jools. Thanks, Joolsg

[Amrob]

Good article. You're doing some tremendous work campaigning to raise awareness. Props to you!

[Joolsg in reply to Amrob]

Ta Amrob. I just hope doctors start to realise how serious RLS really is.

[WideBody]

@Joolsg I am so impressed. I don't even know what to say. I am one of your followers, I don't follow a lot of people but your writings have given me hope. I wanted to read the full article and watch the video before I commented.

You explained it so well, I went through it with my wife and she watched the video as well.

I really can really empathize with all that you have said. I have a confession, I too use Cannabis, it is legal where I live, but my wife doesn't quite understand. I feel bad that RLS has consumed her life as well.

Are you saying you use Cannabis drops in your tea? I would love to hear about that.

I am happy you have found relief and I appreciate all that you have shared.

Excellent job explaining the condition and increasing the awareness of RLS!

[Joolsg in reply to WideBody]

I have cannabis oil with 20% THC and I used just 0.3ml of drops at night and it alllowed me 3 to 4 hours deep sleep for the first time in decades. Then when I started Buprenorphine, I stopped the cannabis and the nausea was terrible on Buprenorphine. After a week of nausea, I took it again as I remembered chemo patients use it to stop nausea. It worked the first night. I haven't taken it for the last week and still no nausea. It clearly takes about 2-3 weeks for some people to adjust to side effects.I'm so so happy. I can't quite believe it.

[WideBody in reply to Joolsg]

Happy Dance!

[smilingjane in reply to Joolsg]

Hi JoolsgCan cannabis oil 20% be bought in the UK do you know. Apologies if anyone put there has already answered this. I forget so easily.

Many thanks

Jane 😊

[Joolsg in reply to smilingjane]

It has to be prescribed by a doctor and not available on NHS. We have to pay. Works out about £2-3 a day. This is the link.drugscience.org.uk/project-...

[rkatt]

Excellent. A terrific article. This is just what we need - publicity, acknowledgement, the silence broken. Rah!

[Joolsg in reply to rkatt]

It'll still be an uphill battle but we have to start somewhere.

[Covenant1962]

Hello Joolsg thanks for everything you are doing to raise awareness of RLS. I very recently was able to access some medical cannabis oil Althea THC20:CBD1. So far i have been taking 0.2ml before going to bed. It provides some relaxation but is not helping much with the RLS. I think the dosage might be too low. Can you remind me of the strain and dosage you are using please? Also is it safe to use cannabis with low dose opioids?

Regards Covenant

[Whippetmama in reply to Covenant1962]

Bump your dose up. You can't overdose on it and the effects will only last between 4 and 6 hours. I take 1 cc at night with 2 tramadol and sleep the night through.

[Covenant1962 in reply to Whippetmama]

Thanks Whippetmama are you using the same brand and THC to CBD RATIO?

[Whippetmama in reply to Covenant1962]

No. I live in Mexico, where medical Marijuana is legal, and I distribute a brand that (so far) isn't available outside of Mexico. My oil is 30% THC.

[Paul007]

I'm so glad you've found something that works for you. Can I get Buprenorphine from my local gp?

[Joolsg in reply to Paul007]

Mine was very helpful but it very much depends on your GP. Some refuse to prescribe ANY opiods. The best way forward is to print off the Massachussetts Opioid study and the posts on here by me and Shumbah. I failed all other drugs and I've had an iron infusion and tried every single diet that others have said helps them. You'll need to research and fight your case. A diary or video of how your RLS affects you would help. Have you tried the other drugs like pregabalin and codeine etc?

[Paul007 in reply to Joolsg]

Thank you for the quick reply. Pregablin didn't work for me but I had great success using Diazepan for 6 yrs but it's soul destroying and took me to a dark place. The diets don't work for me and I've had this condition since I was 7 yrs old and I'm now 42. I also get it throughout the day and night unlike most people who only suffer at night. I started cbd oil a week ago but had little to no success

[Joolsg in reply to Paul007]

CBD oil may not help. Its the THC that really helps with sleep. Have you had bloods taken?

[Paul007 in reply to Joolsg]

A couple of days ago I smoked some weed as a last resort and slept really well. Problem is in the UK its still illegal

[Joolsg in reply to Paul007]

drugscience.org.uk/project-... can now get legal cannabis for RLS in the UK. Sadly not on NHS though. It costs around £3 a day.

[Paul007 in reply to Joolsg]

Thank you I'll look into it

[Joolsg]

That's exactly the strain and make I have. I slowly increased dose to 0.6ml and that together with 10mg Oxycontin at midnight would give me 3 to 4 hours sleep from 1 to about 4 am.I never had problems taking the 2 together and I recently used 0.3ml at night to stop the nausea on Buprenorphine.

[Covenant1962 in reply to Joolsg]

Thanks Joolsg

[Jumpey]

Great article Jools.And gratitude from me for all your awareness raising campaigning. X

[Joolsg in reply to Jumpey]

Thanks Jumpey. 😊

[vikkkk]

Very informative article!! Love this. Been struggling with RLS since age of 17 and the most difficult part is the ignorance from other people. Love seeing articles and the illness being recognised more and more! Gives me hope 🙏

[Joolsg in reply to vikkkk]

I agree. We have to be more vocal and campaign. If you want to help, please see the pinned post with the template letter to ask for RLS to be taught at medical school & during GP training. Until it's included on the curriculum, doctors will learn nothing and see it as a minor irritation instead of a very serious neurological disease.

[Merny5]

This is a fabulous article. Thank you for sharing your experiences with the media. Fingers crossed that continued knowledge of this horrible disease is presented to the masses. Bavo Joolsg!

[Whippetmama]

Good article. Cannabis and tramadol control my refractory RLS (3 spine surgeries), Thanks for helping to raise awareness.

[Kayakcarole]

Joolsg, your article and interview are a godsend to those of us struggling with RLS. After too many years on Pramipexole and then dealing with augmentation, I also use thc in a couple of different forms to get through the night.I chew an edible gummy with 5 mg thc, 5 mg CBD around 8 pm. Then I use about 3 mg of thc tincture drops and right at bedtime I smoke cannabis ( 20 to 24 % thc ) in a vapor pipe. I also have to get up an additional 1 to 2 times in the night to take additional puffs on the pipe which usually stops my crazy legs in minutes but at least I’m sleeping most of the night, even though it’s interrupted sleep.

I will share your video and article. Many thanks for the work you are doing on behalf of all of us.

[Joolsg in reply to Kayakcarole]

Thanks Carole. 😊

[Heatherlss]

So pleased for you !!

[Joolsg in reply to Heatherlss]

Thank you Heather. X

[Cantstopwontstop]

I am so glad to read someone else is having success with the buprenorphine and cannabis combo.

[martino]

I have now read the piece and next time I see the neurologist I will raise this. At the moment my combination therapy is working but I suspect this may change. Thanks for all your efforts!

[Jimbo77]

Sorry for the late reply, Julie. This is incredible! Thank for sharing!

[Joolsg in reply to Jimbo77]

Thanks Jimbo. Still can't believe it but in 6 weeks, zero RLS and I'm sleeping 8 or 9 hours every night. My body isn't used to sleep! Just have to raise £50-100,000 for Prof. Chaudhuri to do trials so that the NHS and NICE and MHRA make it available to the thousands of other people in the UK suffering refractory RLS.

[LotteM in reply to Joolsg]

Why doesn't Prof Chaudhuri write a proposal to the national science foundation? £50-100.000 isn't a large amount in that world, a phd project costs roughly 4-5x more. I would gladly help him write it. Anything to forward underpinning effective treatments of RLS.

[Joolsg in reply to LotteM]

Might talk to you about this. It's the only way to make it 1. Easier; and 2. Mainstream to get treatment. I'm not on Facebook but used my daughter's account to have a look and on EVERY RLS help group, augmentation on DAs and failure of Alpha2Delta ligands and tramadol is very common. Making Buprenorphine and methadone available for all those patients who cannot find relief would be an enormous leap forward.I can't research right now but will look at charitable institutions giving grants for projects asap.

X

[KojaDD]

I've been so tired lately that I can't sleep because I'm tired. It only helps me to smoke weed or, for example, eat mushroom microdose chocolate bars, which I bought at shrooms-online.org/shop/mag... . Maybe I should turn to specialists, because I don't understand what my fatigue and nervous tension are connected with.

[Joolsg in reply to KojaDD]

Do you have RLS? Are you taking any other meds, apart from cannabis or shrooms?Raising serum ferritin by oral iron pills or IV iron resolves majority of RLS. Replacing trigger meds, like anti depressants, resolves many cases too.