I don’t know which cases will be regarded as falling within the “ exceptional medical need” category but it’s clear so far that it will be for children with severe epilepsy and Multiple Sclerosis.
I really hope that those of us with severe RLS will be able to access it. I will be able to access it for my MS and will see how my RLS responds.
Fingers crossed.
Written by
Joolsg
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Yep- seeing as they don’t even acknowledge it’s real!
Yep, saw it on the news. Its a big step forward. I guessed it would be restricted for just a few conditions. and RLS probably is not one of them. We will be watching your posts in the Autumn for you to report on if its helped your RLS as well. BUT, i will be at my doctors to discuss MY RLS in the Autumn to see what i get told. I am sick of my RLS and sick of the meds , i struggle every day.
Ive halved my meds within 4 weeks of vaping cbd 1500 mg, no nicotine. Placebo some may say but i know ive halved my meds and intend to reduced further in due course. All good
I bought a weeker 200mg first bit decided i needed to try it properly so i soon upped the strength with a 'stronglife' 1500mg
I have said for years that my rls and chronic foot pain (both) is mainly due to very high arches and I've tried everything over the last 15yrs of suffering. - They didnt hury when i was stoned every day though! Now i can take cbd legally its had to be worth trying!
It is a start one we thought impossible just a couples of years ago. So strictly limited exeptional circumstances for now but a step in the right direction .Gives me some hope for the future of my grandchildren should they inherit RLS from their mum (my daughter ) x
I think once the Gov Medical advisers report on the results, medical cannabis will be much more widely available. I think it will happen very, very quickly so will benefit you and your daughter Pipps.
I am going to talk to my GP and consultantal about this - and SHOUT if I need to. Maybe we could organise a a letter to Savid Javed MP telling him about our horrendous life experiences with RLS?
As often things start with ‘serendipisous’ observations, or observations by chance, why don’t we ‘organise’ them and have rls-uk collect them to build up and back up an action for a request? A request to include (refractory) rls in the list of diseases.
So, to all who use any form of marijuana, legally or illegally, please if you can, assess and document the severity of your rls without marijuana and whether and how it improves after using it. Instead of ‘bad’ and ‘better’, it may be good - if not necessary to make it really useful- to assess the severity of your rls using the rls monitor and more importantly the IRLS scale:
I couldn’t agree more Jools! Recently I have had to increase my ropinerole back to 3 or 4 mg a day as my hay fever meds have made my RLS much worse which is annoying as I had managed to get down to one and half mg a day after reading advice on here about trying to get the doc to change my meds to something else. Fed of of getting up twice during the night to have to warm up some milk and nibble on a biscuit before taking the extra ropinerole...then having to stay on my feet for at least half an hour before the meds kick in. Am in the middle of trawling this site for recommendations re a different style of medication. But my doctor doesn’t seem to mind me staying on the Ropinerole?? The struggle goes on!
Hi Jumpylegs, there are hay fevers products that are better to take so your RLS doesnt become worse, have you tried any..? Its a shame you have had to increase your Ropinerole to a high dose, i hope you can eventually get right off the Ropinerole as i am sure you are augmenting aswell as the hay fever meds making things worse. Never mind what your doctor thinks about you staying on the Ropinerole, its not him who has to struggle for sleep.
I second everything Elisse says. 3-4 mg of Ropinirole is too high and you are augmenting. Claritin is a safe anti histamine and doesn't worsen RLS. Try that and reduce the ropinirole slowly down to 0.5mg by reducing 1mg every 2-3 weeks.
Life off ropinirole is so much better -no fidgeting in the day and early evening and no getting up every 2 hours in the night to take 1mg of ropinirole.
I really hope you manage to reduce and get off ropinirole.
Then, medical marijuana may be available, fingers crossed.
It will be very interesting to see how the legalising is taken forward. Some of us may not be around to see the extension to RLS. The possible psychosis aspect must not be ignored. I have quite a lot of experience in the family with psychosis and whilst I have severe RLS I would need to weigh up very carefully the pros and cons of going down the cannabis route.
It will be very carefully done before Autumn. Kids are taking this for severe epilepsy, and the amount of THC i am sure is low. The boy in the news recently had his CBD oil with THC formulated just for him, it was done in Canada by a doctor his dose etc was worked out for him. This Government wont be allowing any which is going to make things worse.
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