Best CBD for fibro symptoms? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Best CBD for fibro symptoms?

Marzipan3468 profile image
28 Replies

I am wondering about others experiences with CBD. I have been reluctant to try until now and discovered there are so many makes, strengths and types available so just wanted to hear from others on which they have found most beneficial for their symptoms, particularly pain.

28 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministrator

There is so much variation in what is available, and what works for one person may do nothing for another. I know that the brands I use help me but I also know others who got no relief

Marzipan3468 profile image
Marzipan3468 in reply to Hazel_Angelstar

What strength do you take, and do they take effect straight away or does it take a while? Thanks for replying 🙌🏽

Hazel_Angelstar profile image
Hazel_AngelstarAdministrator in reply to Marzipan3468

I've no idea what strength the drops I use are. I wish drink tea wish is 6%cbd

For me, it was a gradual build up effect over time

CM1EDSUK profile image
CM1EDSUK

Hi - I have taken CBD for over 4 years to help with pain. What you should do is start with a low dosage & build up very gradually. Some people start with a high strength, thinking 'I'm in so much pain', which is totally the wrong idea, & then, unfortunately gain no benefit.

The CBD I use is 2.5% strength, & it contains CBDa which additionally helps with pain. Wherever you do consider buying from (& I would be happy to say by PM where I've been buying mine from should you wish), do make sure they provide lab certified results so you know exactly what you're buying.

The only caveat is that CBD is broken down by the same liver enzymes that break down over 90% of prescribed meds, so you should discuss with your pharmacist/GP prior to taking this. If you do take such meds, then for safety, a 4 hour gap is recommended between taking these & CBD.

CBD only lasts in the body for about 6 hours, so you should take this ideally 3x a day (tho twice a day can still be helpful).

It can take between 2-8 weeks to find any benefit, so patience is needed. The company I use now has CBD transdermal patches, which can however be used safely as these are absorbed by the skin rather than the gut, so no time gap needed.

Marzipan3468 profile image
Marzipan3468 in reply to CM1EDSUK

Thank you, that is really useful information - I will take a look at some shops and go from there.

LhasaMomma profile image
LhasaMomma

health.harvard.edu/blog/cbd...

Cat00 profile image
Cat00

Too expensive for me, I seemed to need around £30 worth every 10 days, it didn't help but I only tried it for those 10 days, I didnt realize you were supposed to try it over 2 months but I couldn't afford that anyway.

Kimmydog profile image
Kimmydog

hi Marzipan3468 - this is one whereby you need to do your research and it’s quite pricey. I use one that is 10% which I get from a uk company online. But it is £45 for a small bottle which only lasts about a month. I do however feel better for taking it. I don’t know if it’s that it lessens the pain, or just helps you relax so that you can deal with it better. I ran out over Christmas and have really felt the difference. They go up to a 20% strength which is the highest that you can get in this country. I have tried other cheaper ones from health shops and they didn’t really help. I can let you have the name of the website in a pm if you want it.

CM1EDSUK profile image
CM1EDSUK

Just to add to the comments above, the full spectrum CBD I buy online is £9.99 for a 10ml bottle, & £23.99 for a 30ml bottle, which lasts me a month. They also show lab certified reports.

The Harvard link is the viewpoint in the USA (& about Canada) which differs from that here. More research is definitely needed, but CBD does seem to show effectiveness for pain & anxiety in particular.

E3178 profile image
E3178 in reply to CM1EDSUK

Hi, I use the strongest full spectrum available from a dog charity based company in uk. It is much more expensive than your purchase. I would really appreciate the name of your supplier. Thankyou.

desquinn profile image
desquinnPartner in reply to CM1EDSUK

I have to disagree with your comment about the harvard link that LhasaMomma posted. It is in line with what the view is in Europe and the UK.

Basically it boils down to:

There are some positive signs across CBD (3 little letters but it is much more complicated once you unpick)

The research supports some positive signs for maybe some people but the studies are so limited due to their design. Some are bad design and some are limited by CBD itself. Research quality is getting better.

Research about CBD is much poorer quality than that on cannabis but it is generally not great in either results or design but that is improving.

Anecdotal evidence is there hence the positive signs but that's not research.

And out of the Harvard article I found the following line the strongest one

"However, there is an abundance of commercial advertisements about the magical effects of CBD, and it is frequently presented as a cure-it-all potion that will treat everything including diabetes, depression, cancer, chronic pain, and even your dog’s anxiety!"

There are some variations in law in how they are approaching cannabis and its derivatives of course but the research is pretty much the same.

CM1EDSUK profile image
CM1EDSUK in reply to desquinn

Sorry, I wrote my last post above in haste before going to house sit for my son when his plumber was about to visit (they've been without central heating since Thurs), & it was likely poorly worded.

I was thinking of the different state laws about even bringing CBD from one state to another in some instances in the USA. In the USA they also allow a higher THC component in CBD oils, which would be considered illegal here in the UK.

Of course research is available to all, & I agree more research is needed, as I said. You found the line you quoted from the Harvard article the strongest one, & there we will differ. I found them mentioning possible interactions with prescribed meds something that definitely needs highlighting as some may not be aware of this. A person should always consult a pharmacist/GP before trying CBD to discuss such meds.

desquinn profile image
desquinnPartner

I think there are some that benefit from it whether it being affecting the "variables that modulate pain" or the pain itself some are better after taking it. But it is not natural / free from risk / a panacea / or backed by high quality research.

That is not to say it may not help you or not to try it but be aware of what you are taking and talk to your doctor so they are aware. Even if they disagree they will still know and be able to say you cannot take that as you have reduced liver function or are taking A or B.

Even if there was good science there would still be the "med crapshoot" or luck factor. Pregabalin and other meds only work in 30 - 40% of people so what's to say CBD would be any better or worse. I do not believe the lab reports as some are false or not up to date if you believe the BBC and others and the lack of regulation is very worrying. There are charlatans and profiteers in this sector carrying out some very bad marketing and business practices.

So what you are doing now is the right route and see what others try. I just wish the science was better and there was regulation. Good luck.

CM1EDSUK profile image
CM1EDSUK in reply to desquinn

Our bodies have a natural endocannibinoid system, & fibro sufferers may be interested in this link which gives a brief overview: verywellhealth.com/what-is-...

There is of course a distinction between naturally occuring cannabinoids (endocannabinoids), which have even been found in breast milk, & plant-based, or phytocannabinoids; only time will tell if the latter may be effective.

I appreciate your concern about CBD lab reports, but will say a member on another forum once kindly corrected me when I posted about a scientific matter based on the BBC's reporting as the BBC was incorrect. With the NHS's website, I've also found it incorrect at times. Their 'info' on CBD I can only say is an assumption: nhs.uk/conditions/medical-c... as it says, 'Some cannabis-based products are available to buy over the internet without a prescription.

It's likely most of these products – even those called CBD oils – will be illegal to possess or supply. There's a good chance they will contain THC, and may not be safe to use.'

So, research, research & even more research is needed when contemplating CBD (& after discussing with your pharmacist/GP as you advise). And hopefully the FSA will help in regulating CBD, but I'm not sure.

desquinn profile image
desquinnPartner in reply to CM1EDSUK

Good sources will not only make mistakes like anywhere else but will admit them and fix them. I have no doubt the BBC does make mistakes but it was not just one report and not just by them. Again I am not anti this as an option and what people do individually is our own responsibility. Hopefully the research will come to fruition and if beneficial then it is regulated and manufactured responsibly and sold ethically. There are a lot that IMO are not bothered about the last part at least.

forbes.com/sites/ajherringt...

leafly.com/news/strains-pro...

bbc.co.uk/news/uk-england-k...

bbc.co.uk/programmes/articl...

CM1EDSUK profile image
CM1EDSUK in reply to desquinn

Thank you for the links; as ever I'm interested in learning more. If a person buys an organic CBD, then there should be no impurities, so perhaps that's important to mention. The hemp plant only too readily absorbs impurities if it's not grown organically; in fact industrial hemp was grown around the site of the Chernobyl disaster to help absorb the soil's toxicity. So, CBD should most preferably be organically grown.

The third link says, 'The FSA has allowed about 6,000 CBD products to be marketed in the UK, pending final approval.' I've previously looked at some dozen or so pages about this on the FSA website, then searched for the company, & product I use (each product is listed individually, so there are many). As far as I could see they all said,' Awaiting evidence.' Hopefully this includes lab certified results as to the CBD (& THC) content.

Hmm, well the comments I could make about one company mentioned in the 4th link, but that would only be anecdotal, so I will desist.

desquinn profile image
desquinnPartner in reply to CM1EDSUK

I just hate that some are medicating with this product but it is not manufactured or licensed like a medicine and you need to trust the sellers. I am sure there are some good ones but the "dollar is king" unfortunately in this space and many entering the market due to the high margins and lack of regulation.

biker888 profile image
biker888

Im afraid that CBD as with other things such as say for example magic mushrooms are all akin to trying to snag shadows , they may disguise , tamper down the pain a bit , but as with virtually most drugs the body will modify itself and will crave more over time to achieve the same effect , this of course will cost more and more money and the body will get less and less benefit from such drugs , and also to be considered is the more any drug is increased then the more toxins will be entering the body, and toxins are very much the enemy of fibro given we have way beyond the toxins in our body than normal healthy folk , the valve in the kidney works overtime trying to cope with them , many toxins from leaky gut / IBS is an issue , they cause all kinds of problems including cramps / trigger points , sweating , general chronic pain all over , not saying don`t try it , we all need at times to throw the kitchen sink at our fibro , just the nature of the beast .

CM1EDSUK profile image
CM1EDSUK in reply to biker888

I beg to differ in that CBD does not cause you to crave more, & it's not a prescribed med/drug. Please see the WHO's comments about CBD in severe childhood epilepsy: who.int/news/item/13-09-201... which says, 'The ECDD recommended that preparations considered to be pure cannabidiol (CBD) not be placed under international drug control as the substance was not found to have psychoactive properties, and presents no potential for abuse or dependence.'

Please note that they were referring to a higher content of CBD (& also the psychoactive element THC), which is medically prescribed, not CBD that's available from reputable sources here in the UK, where only less than 0.2% of THC is legally allowed.

LhasaMomma profile image
LhasaMomma in reply to CM1EDSUK

It is a good idea not to quote the research related to epilepsy as a justification or argument as to "treatment" of other illnesses or pain. This is a very specific body of research. There is a research being undertaken at present which is so far indicating the "pain relief affect" may actually be as a result of the drug suppressing depression and anxiety rather than assisting with a chronic pain related illness. I personally am extremely cautious over the use of this supplement.

desquinn profile image
desquinnPartner in reply to LhasaMomma

The epilepsy evidence is for medicinal cannabis I believe and not CBD. But casting a substance as toxic is just as lazy as things being all natural. Water and peanuts can be toxic as can pretty much any substance. And toxic substances can be very beneficial like chemo or even things like thalidomide. Best to respect the science and clinical research rather than knee jerk reactions or black and white definitions.

CM1EDSUK profile image
CM1EDSUK in reply to desquinn

The WHO quote is about cannabidiol (CBD). A fairly recent review of the medical literature also looks at the use of CBD in some severe forms of childhood epilepsy: ncbi.nlm.nih.gov/pmc/articl...

desquinn profile image
desquinnPartner in reply to CM1EDSUK

sorry had skimmed your post and not read it properly :( Thanks for the ncbi review post. Was interesting to read, I was only aware of the medicinal cannabis approach here in the UK and elsewhere.

CM1EDSUK profile image
CM1EDSUK in reply to LhasaMomma

I don't believe that in quoting the use of CBD in some severe forms of childhood epilepsy that I was trying to justify the use of CBD (which can be bought) in other disorders, only that 'CBD.......was not found to have psychoactive properties, and presents no potential for abuse or dependence.'

I totally agree with you that caution is needed if considering trying CBD. So far I hope I have stressed that one should only do so after discussing with your pharmacist/GP.

SusieSquirrel profile image
SusieSquirrel

I use Beliebis 20mg per capsule. Full spectrum. These seem to be the best I've found. They're expensive but you can find discounts

SlothMode profile image
SlothMode

Hiya Marzipan,

I have been taking CBD for quite a few years now. I have tried taking it via all the different methods but found out the best way for me is to vape it. The brand I take is from CBDFX it's 500mg n I buy it in a 30ml bottle online costs £20 but easily lasts me a few months. Plus they always have good deals if u buy in bulk. I did start on the lowest dose n gradually worked up to this strength. There are higher doses but I'm happy with this one. Vaping CBD helps me with my anxiety which is a major part of my fibro, once I get anxious I can't stop it n it quickly escalates n I then vape to gradually calm down. I find vaping relaxes my muscles so helps with stopping those clenched muscles pains. It helps my nerve tremors too. Vaping also takes the edge off the pain for me too. I don't vape all day just a few puffs here n there when it is needed. People's attitude to CBD amazes me when I tried to tell my last D her reply was we don't recognise that. I say give it a try 😊🤗

PatriciaM2 profile image
PatriciaM2

Have you tried Kannaway CBD. They are an American company who are also in Europe and now have a warehouse in the uk. My husband and I are Brand Ambassadors for Kannaway. Mire than happy to PM you with more information fir you to do your du diligence. Which we always recommend. Ive had lots of feedback regarding how good the products have helped with various conditions.

Gavin79 profile image
Gavin79

for me I grow my own with a big CBD content but also THC process it my self I spent three years in bed and mornings were always horrendous it was the only thing that would help me get out of bed in the morning and with pregabalin but it always takes a couple of hours to kick in. I sleep so much better now and are actually dreaming again which stopped for years. I’m actually feeling like I can start rebuilding my life and begin to enjoy it again instead of lying in bed constantly wishing I was dead because every nerve in my bad was screaming for me the cannabis turned the volume right down and the pregabalin will calm all the muscles trembling I’m still in pain but I’m learning to cope and live with that I’m not telling anybody to do the same THIS IS ONLY WHAT WORKS FOR ME. It’s seem for me dr’s aren’t interested and your left to just manage things yourself all I do is get the best sleep I can stick to a routine Eat the best I can drink plenty of water and keep moving. And try do something you enjoy I don’t think I’d be here today and I shouldn’t be doing what I’m doing but I want to live with an actual life and not just existing in agony and misery. All we can do is what’s right for us but always get some medical advice at least. Maybe when the medical profession and industry take this horrible illness seriously and put money into research we’re on our own

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