Can anyone settle this for me? : I'm a member of a... - LUPUS UK


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Can anyone settle this for me?

Lupiknits profile image
25 Replies

I'm a member of a nothing-to-do-with-lupus forum and the question of medical marijuana came up. Most the the members live in states in the US where marijuana is legal. I said that, if it were legal here, I'd like to see what prescribed CBD oil would do for pain. I was told that something along those lines is available at Holland and Barret but when I reasearched it, it seemed to be more hemp oil, dripped under the tongue and more useful for relaxation and sleep than pain.

Does anyone know more about it? I'm suspicious that if it was as good for pain as the stuff I have dispensed from the controlled medications cabinet then GPs would prescribe it or send me to Holland and Barrett.

I have no experience of street drugs at all. Even in my wild youth I didn't want to tinker with my brain.

The photo shows what happened when I first started stronger pain meds. It's freeform knitting, fondly titled "Mum's Trip" by my delightful off-spring.

25 Replies
MargaretGail profile image

CBD is legal in the UK and many other countries. The Holland and Barrett one is a good place to start as it is a relatively weak one and you have to slowly build up the amount you take. I found that vaping is best for me so I use a Medipen that I keep in my handbag and an e cigarette with Canavape complete. I've been able to reduce the number of steroids I take and completely come off Nortriptyline. My pain levels are so much better and some days I have none at all.

AgedCrone profile image

There is a programme called Gone to Pot on ITV at 9pm on Monday 13 November described as "exploring the legalisation of Marijuana".

It appears to be a light hearted rather than a scientific approach, but it might explain something?

Like you I valued my brain too much to ever try anything...even though in NY in the 1960's I was invited to many Tea(pot) Parties!

But looking at. "celebrities" now in their 60'& 70's who were reputed to have indulged....I sure am glad I was a scaredy cat!!

Lupiknits profile image
Lupiknits in reply to AgedCrone

Oh, yes!

zebedee01 profile image

I have had several people recommend that I take cannibis oil! Like you I do not like drugs and am in fact scared to death of them so I don't feel I can take it. I have been assured though that it is nothing like the stuff you smoke and has no effect on you at all.

I was shown a website that just sells cannibis oil, and a few people have recommended this website to me. Let me know if you are interested and I'll try find the link for you xx

foxglove profile image
foxglove in reply to zebedee01

Interested. Would you be kind enough to find the link for website for me?

Cann profile image
Cann in reply to zebedee01

I wouldn't take anything without testing my body through muscle testing first.

I had a bad experience at college many years ago when most of my friends took drugs and I refused to, my drink was spiked and I ended up in sick bay, quite poorly, unconscious and waiting to go to hospital.

Luckily, I came round, but everyone except my friends who knew me better, believed I was on drugs.

It took several weeks for me to recover and who knows what damage that did to my body. I have always been careful since to get my own drinks and not leave them unattended for anyone to do anything.

My point being, if your gut feeling says not to take something, unless you are able to muscle test yourself like I do, then don't risk it.

Loopydroopy profile image
Loopydroopy in reply to Cann

May I ask what muscle testing is?

Cann profile image
Cann in reply to Loopydroopy

It is where the muscle strength is used to test whether the body can take a particular thing.

There are other uses, too, and different types of kinesiology, but I use the testing which involves the auto immune system and the subconscious.

It is brilliant and has been used for thousands of years all over the world just like dowsing although I couldn't get that to work for me - we are all different.

It came long before conventional medicine appeared.

It gives me knowledge of what I can take and cannot take. If I don't use it and just eat or drink anything, I suffer usually with pain of some area, diarrhoea or some other bad reaction.

I use Hashimoto's muscle testing - a former nurse told me it was called that - I just knew it as muscle testing which was taught to me when I was seriously ill to keep me alive.

It worked so well I have carried on using it.

A doctor even tested my testing and it proved to be right by what was in the medicines. I have many allergies and for me it is the only way to keep reasonably well.

Loopydroopy profile image
Loopydroopy in reply to Cann

Thank you for explaining. Would you be willing to teach me?

Cann profile image
Cann in reply to Loopydroopy

Are you in the UK and if so which county?

Loopydroopy profile image
Loopydroopy in reply to Cann

I’m in the US

Cann profile image
Cann in reply to Loopydroopy

You really need to find a kinesiologist to help you locally, Loopydroopy.

There are many different muscle tests and only one worked for me.

You may need another one to work for you and I am in the UK, so too far, but there must be good ones around you.

Ask around locally in health shops, health fayres and healing groups - only go with one you feel comfortable with.

Talk with them first. Any one any good will be willing to talk first before having an appointment.

I found mine by following the blood group diet and I contacted the centre in Scotland who recommended one in Cornwall - a hundred miles away, but I was willing to travel after speaking on the phone to her. I am in Devon.

Loopydroopy profile image
Loopydroopy in reply to Cann

Thank you for sharing. I will definitely look into this. Hope you are well.

Cann profile image
Cann in reply to Loopydroopy

Hope you find the right one for you and keep well.

Freckle1000 profile image

I think your free form knitting is a wonderful representation of what happens to your brain with too much wacky tobacci. A most excellent piece of knitting !

I was literally 'mugged' by my neighbors once for 'being too strait' and was offered way too much of the good stuff all at once.

Like your knitting, a large amount of this product was most excellent - wow (small amounts just reminded me of brain fog) These same aforementioned neighbors were quite prone giving you muffins and so forth without telling you of its special properties. I ate the bloody things to be polite.

At the time this larger indecent occurred I had an undiagnosed B12 deficiency - and the first time I felt some neuro/balance damage symptoms that would come to the fore big time a few years after this - was just after this 'extremely good time'

The nasty foggy reaction took about three days to wear off - I was a tad frightened that I'd fried my brain permanently. I had been given a lot......

I was also informed by my partner that I had - a bit too much of a good time and to never take the stuff again. This was sage advice.

If you have any SLE neurological involvement - just say no.

ps. I've since moved to a non cannabis growing area.

Lupiknits profile image

That sounds scary Freckle x

Cas70 profile image

My 86 yr old half sister was given a bottle of CBD oil from and she had her pain levels lowered incredibly. She has fibromyalgia and other gruesome ailments. She is now mobile again and enjoying life. There was an article in the Telegraph the very same day she told me. I bought some. My pain levels are bearable now . It was legalised over here last year, is non addictive and It cannot affect the head as it is the FLOWER of cannabis and not the leaves. All our present drugs originate from plant life but have chemicals - I prefer natural remedies.

Lupiknits profile image
Lupiknits in reply to Cas70

Thank you. I may well give it a try. I know the "high" part is removed. Since opiods are opium poppy based I wasn't sure why this variety is not approved yet on the NHS. Maybe more research is needed? No way would I smoke the sreet kind!

Cas70 profile image
Cas70 in reply to Lupiknits

I wouldn’t smoke it either but this stuff is ok as shown by the fact that Holland and Barrett sell it. I think it will only be a matter of time before it is on the NHS - when the big pharma companies start to manufacture it ? I read the best H&B oil is Jacob Hooy - read the reviews and the best of luck. I will try most things in moderation to dull this bloody awful illness Cas

Lupiknits profile image
Lupiknits in reply to Cas70

After some research I've bought some from the truthnaturals company, and they gave me 15% discount as a prize from a spinning wheel. I've chosen the under-tongue sort . Tempted by the jelly babies though! It's all legal to buy since last year.

I'm just going to try the smallest dose at first, as they advise

I've been reseaching as much as possible, but there don't appear to be many studies done in length, depth or with enough subjects to carry anything out in a blind control trial. However there is nothing I can see to indicate that it could do harm to me personally.

The jury is out on whether it might gain weight or cause weight loss. i'd be happy if I get some gain.

I'll report on how it goes. Should it help a lot I shall fess up to my GP. Maybe 🤗

Cas70 profile image
Cas70 in reply to Lupiknits

Fingers crossed for you - we all react differently so....last night I had such a headache (Sjogrens) I put 5 drops in a tiny bit of water and it worked. Slept really well too. I only use it when I might normally take a co coda oil so am very happy as it does ease those aches and pains - let us know how it goes !

This comes up a lot on my AS Facebook sites. One lady was in Scotland and said she bought her supply online as you could not get it anywhere in a shop so maybe the Holland and Barrett stuff is not the same? I don't think they were using oil in the main. I've not gone down this route as thankfully my pain is still manageable on nsaids. I know the bit that gets you high is removed from the CBD but currently not comfortable with the thought of it. May change my mind in years to come as my condition deteriorates!

Lupiknits profile image

Early results: I started on the lowest dose of just one drop and the headache I'd had for three weeks went. It was a "take a paracetamol" kind of headache, so not a bad one and this might be a coincidence.

I've upped the dosage a little but so far nothing has happened for my hips, knees and lower back which are particularly bad at the moment.

Can confirm no wacky effects 👍

CBD oil Versus Cannabis / Marajuana it's simply not comparing like with like.

Whilst I accept it's for each individual to decide what is /isn't for them its simply not useful to even think of Cannabis ( with all it's negative illegal drug use associations) when considering using CBD for pain relief etc.

It's a bit like comparing downing half a bottle of Absinthe with your drinking a glass of shandy! Let's not forget that morphine derives from the Poppy and what negative associations that has with opium / heroin abuse?

CBD is actually a safer option than analgesics /NSAIDS etc for pain relief as it doesn't have the side affects these can cause ie I can't take NSAIDS after a short course caused stomach bleeding.

There is an awful lot of information on the benefits of medical marijuana for multiple health conditions , much of it evidenced based clinical studies. I'm not saying you should take it , but I do think people should have a more open mind and make more informed decisions regarding its use.

I'm not using it at the moment but have used it in the past and quite likely will use it again in the near future. Personally, I find it eases pain , stress and promotes a more relaxed state and better sleep. The one negative for me was finding myself a little more groggy and slower to wake up and get going in the morning.

I was recently looking at the Hemp Oil offered on the Norfolk Essential Oil website but haven't tried it so couldn't give a personal opinion.

Lupiknits profile image

I agree ziggy, that, apart from the legality, medical marijuana as a whole needs more attention. Like you, I cannot take NSAIDs or aspirin. The prescribed painkillers that do work for me without apparent side effects, are opoids: the good poppy. Granted we're not talking Opium dens, but with that, there is a middle way, why not with marijuana?

One more report. CBD does not cause the munchies, for me, at least. I'm still not on the dose they say I could go up to. No effect on pain, but I have been physically overdoing things the last few days. Got to rest more because the pain is bad.

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