medical cannabis: hello everyone. has... - Fibromyalgia Acti...

Fibromyalgia Action UK

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medical cannabis

21 Replies

hello everyone.

has anyone here been invited to take part in medical cannabis trials, from UK Fibromyalgia (link removed by admin)

ive been invited this week, just curious to see if anyone else as took part in it.


21 Replies
Painny profile image

I never heard of this organisation, I just saw their website and not much info about it

in reply to Painny

me neither, i only posted it to see if any others had been offered the same, wasnt sure if it was a scam or not

Painny profile image
Painny in reply to

oh, okay, it’s not a kind of webpage I look into. Any logical organisation would say who they are, not here.

in reply to Painny

they emailed me asking if id like to take part in the trials, asked for a drs summary etc.. i think when i signed up here i clicked a box asking if id be interested if any new meds or trials came up, might be that, it was here or some other fibro site i clicked the box..

rosewine profile image

I was asked if I would like to take part as I think some time back I ticked to say I was open to certain trials. I declined as I have tried certain drops etc and they have given me bad side effects.

in reply to rosewine

thanks for confirming just needed to be sure

bertie1606 profile image

It was in an email from UK Fibromyalgia. I filled in the info. Prices and info are on their website x

in reply to bertie1606

thanks for confirming

BlueTofu profile image

Yes, the invitation was sent to me, but I'm not doing it because of previous bad experience, and as I get so many side effects from anything.

in reply to BlueTofu

thank you for clarifying

QUE6T-33 profile image
QUE6T-33 in reply to BlueTofu

hi Bluetofu, can I ask what sort of symptoms you experienced ?

BlueTofu profile image
BlueTofu in reply to QUE6T-33

I just felt really ill. It's a long time ago. But I have got worse in my reaction to any medication. Also can't drink alcohol or have caffeine, minimize any added sugar etcI had to quarter the dose of Nortriptyline when I was put on the minimum 10mg dose.

I guess I think the risk versus gain equation, makes me feel it's not worth it.

QUE6T-33 profile image
QUE6T-33 in reply to BlueTofu

yep, agree with you - not worth it.

in reply to BlueTofu

ive had to give up teas, coffees, chocolate, vinegar, cabbage and loads more, even sticking to basic foods like beans on toast sets my stomach off, i was diagnosed with a hiatus hernia in 2020, i assume that courses it for me, but with covid and everything else going on its never been explained to me,, they found the hernia because i was sent in for a biopsy on my pancreas (which they never took) and ive been going down hill ever since, started having breathing issues not long after, it came and went at first slowly building up to everyday, had to give my job in feb this year due to it, told the doctors for 2 years that something else was wrong, they dismissed it saying its your fibro, theres nothing wrong with you etc, making me feel its all in my head, i kept pushing managed to get a chest xray a month ago, and 2 weeks ago i was diagnosed with a collapsed lung.... it goes to show its not always fibro, but drs always say to easily every things fibro once your diagnosed with it.. the last 3 years have been a nightmare.. good luck

BlueTofu profile image
BlueTofu in reply to

I'm so sorry for the struggle you've had to be believed, I hope you've now had treatment for the lung that has helped

in reply to BlueTofu

no nothing, no treatment, not been told whats caused it,not been told if itll get better or if itll get worse, nothing at all. im done with the nhs, ill never trust them again

thanks for replies everyone, i just needed to be sure it wasnt a scam etc, need to be careful these days,, ive click yes anyway for now, just because im curious about it, but wont be taking it, because i think your driving licence gets suspended..

Arymretep profile image

Yes i got an e mail too but they wanted your medical records so I didn’t bother.

Duffy2021 profile image

I have tried medical cannabis with project 21, it didn’t really help me, except slept a bit better. Is quite expensive, you have to pay to speak with your consultant every time and the product is about £150 per bottle, I had one for the day and one for night. Lasts about a month. Hope this is useful information for you.

in reply to Duffy2021

im going to be giving it a miss.. think id rather make my own oils if i was to try it now. thanks for replying

Taima profile image
Taima in reply to

Better you get a prescription either way for legality reasons

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