RLS AWARENESS

[Joolsg]

I did an interview with a journalist from the Sunday Mirror about Cannabis and made sure I talked about RLS. I will be quiet for a while after this- or maybe I will consider a more direct action campaign to make doctors listen.......

mirror.co.uk/news/uk-news/h...

[Covenant1962]

Joolsg you did a great job on the radio interview. I don't know what you've got in mind for more direct action but I would be inclined to trust your instincts.

Regards

[Joolsg in reply to Covenant1962]

Thinking of banner protest outside RCGPs with stories of all those who have been badly treated on the placards. For example:

'8mg Ropinirole. Terrible Augmentation. GP told me NOTHING ELSE NHS can do".

"GP told me to drink milk to deal with Augmentation'

'A&E restrained me. Never heard of Pramipexole or Augmentation or DAWS'.

'Dopamine Agonists no longer 1st line treatment'

Etc.

It's clear that they're not going to change the curriculum/guidelines/treatment recommendations any time soon and with the GP shortfall, the backlog because of Covid, NHS funding issues, we're at the back of the queue.

[Covenant1962 in reply to Joolsg]

Very true Joolsg

[Kaarina Administrator]

Thank you, Joolsg for your determination in raising awareness of RLS. You have done really well with putting together the RLS-UK Campaign for Education of GPS in the UK, the article in the Lancet, a radio interview and an interview with a journalist from the Sunday Mirror, all accomplished in a relatively short period of time. I want you to know that all your hard work really is appreciated and I am proud of you.

[Joolsg in reply to Kaarina]

Thanks Kaarina. I just got very, very angry and sent emails everywhere. Some received a response. Still such an uphill battle though but we will get there. MS was like this in the 60s and 70s and eventually, people became more engaged, campaigned, raised funds & big pharma realised there was money to be made.Today, if you're newly diagnosed with MS, the prognosis is really, really good. Life changing meds are available.

I really hope that will be the case with RLS within a decade.

[Spurdog1]

Such a powerful message Jools, well articulated. Thank you, and may the relief continue. I have a lot of sympathy for RLS sufferers.

[Arjiji]

Hi Joolsg

I am interested in knowing the content of the interview you did for the Sunday Mirror, but I live in Spain and the link that appears in your post is incomplete, it just says: mirror.co.uk/news/uk-news/h ..., and so I can't find it. Would you be so kind to write me the full link ?.

Or in another way, if you have the report in writing, could you send me the text ?

I belong to the Association of patients with Restless Legs, AESPI, of Spain and I am also struggling so that doctors and other associates know the medicinal effects of cannabis, but at the moment no doctor listens to me, and the directive of the association does not want to confront to the doctors.

I am a daily follower of your posts and those of Mr. Manerva, unfortunately now muted.

Thank you very much for your attention

[Joolsg in reply to Arjiji]

Try typing in the full text and see if the link works. Hopefully you can access from Spain.mirror.co.uk-news/hundreds-...

How are you Arjiji? I found your story quite moving. Daragh posted it. It seems that you're still on Dopamine Agonists and still getting bad RLS. I hope you manage to find better meds that give you relief.

Cannabis didn't stop my RLS but it gave me 2 to 3 hours of deep sleep and the RLS didn't wake me up.

It now really helps the side effects of Buprenorphine- it stopped the intense nausea and now helps reduce the opioid sweats.

By the way, Manerva hasn't left, he is now posting under a new user name- Elffindoe so you can still follow his posts.

Text

[Arjiji in reply to Joolsg]

Thanks Joolsg, for your interest. I finally managed to read the report from the Mirror. It is very interesting to compare the situation in the U.K. with that of Spain.

Here there is no possibility of obtaining a prescription for cannabis products neither in public nor in private medicine, nor is there a cancard. There is only one medicine called Sativex, recommended for MS and other chronic pain states, as a sublingual spray, each 100 microliter spray contains:

2.7 mg of delta-9-tetrahydrocannabinol (THC) and 2.5 mg of cannabidiol (CBD) from Cannabis sativa L. The box contains 3 sprays that give for about 40 sprays each, that is for 120 sprays. And it seems that for RLS it is also very effective. The price is high 510 euros, but less than the 1000 dollars that someone has to spend in the U.K., and it is bought in pharmacies, with a private prescription.

I haven't tried it yet .

These days a legal initiative to decriminalize cannabis products for medicinal use is being presented in the Spanish Parliament.

[Joolsg in reply to Arjiji]

Mmm. Every time I try to type out the link it fails.I will try separately.

mirror.co.uk-news

/hundreds-prescribed-medical-cannabis-bid-25071280

You will have to type it into your browser.

I will also try a message.

[Arjiji in reply to Joolsg]

As for my Joolsg condition, I have to tell you that my RLS is not serious, but my insomnia is persistent.

It has been three years since I stopped taking DA and I have not replaced it with a2d Calcium Channel Regulators or opioids.

I had 20 sessions of TME and it was good to control my leg movement, but not to sleep after 30 years of taking pills. Now to sleep I alternate Clonazepan, with Trazodone or mixing it in very low doses, some days I don't take anything even though I don't sleep well. I should have given 10 more TME sessions but because of the Covid I have not been able to do it, perhaps in the month of October and if I do, because my legs begin to bother me again.

But the pills I take cause tolerance and I have to increase the doses, since I don't want to go beyond the minimum dose I have to rest for a while and move on to another remedy, hence my interest in cannabinoids.

[Joolsg in reply to Arjiji]

I really hope Spain legalises medical cannabis. Sativex isn't as effective ( I also have MS). My cannabis oil costs about 3€ a day so I can afford it. For severe pain, the dose would be much higher & the cost prohibitive.It would definitely help you sleep.

I'm pleased your RLS is under control.

The TME sounds fascinating.

[SueJohnson in reply to Arjiji]

If you click on the link "mirror.co.uk/news/uk-news/h..." that is in Joolsg's original post it will take you to the full link or at least it does for me.

[Joolsg in reply to SueJohnson]

I think it's because Afjijiis in Spain. Maybe there's a paywall.

[Pippins3]

Joolsg we are so lucky to have you in the group doing amazing things to higher the profile of RLS x Pipps

[Kaarina Administrator in reply to Pippins3]

We really are, Pippins3. I am so grateful to Joolsg.

[Joolsg in reply to Pippins3]

Thanks Pipps. I will always remember your kindness and knowledge when I first joined the group 5 years ago. I would never have been able to get off Ropinirole without your help. I remember you telling me to 'pay it forward' and I've been trying to do that.You have helped so many get off DAs and onto safer, better meds. Thanks so much.

[Pippins3 in reply to Joolsg]

Aww Jules that may me tear up thankyou x

[Kaarina Administrator]

Bump

[alport45]

I started suffering from RLS just a couple of months ago when I started Perineal Dialysis. I understand RLS is common among kidney patients. Requip (ropinirole) is not working. Marijuana is legal here in California. It sounds like something I ought to try. Even just a few hours of sleep would be a blessing. I'd love to get an opioid prescription. I know that works well because I had some left over Percocet (Hydrocodone) from after surgery.

[Joolsg in reply to alport45]

Try emailing Dr. Buchfuhrer at [e-mail]

He gives free advice by email within hours. He's in California & is also doing tele consultin. He will be your best option & can advise best meds & if suitable he can prescribe opioids.

[alport45 in reply to Joolsg]

Thanks for the referral. I'll contact the doc. I belong to a big HMO which doesn't allow its docs to think outside the box.

[Hidden]

You have been a busy bee Jools thank you so much for all youhave been doing for all of us. You are on a mission no stopping you. 😊. will post this to fb groups. 😊