As I’ve been reading through posts, I’m concerned that many of us fibro warriors are just prescribed highly addictive, liver&kidney damaging drugs, without being told more about the long term effects of heroin.
When I was diagnosed in 2015, I didn’t accept my lot.
I was already addicted to opioids from years of undiagnosed pain, and needed to find a better way to deal with pain and get off the smak. Did I mention that tramadol is an opioid?
Did you know that overuse of opioids can cause higher pain sensitivity?
You’re probably now screaming at me wtf can I do?
And the answer is, lots!
I investigated cannabis, illegal in my country (U.K.) until I read about CBD and how it works. It’s a gentler approach and takes time to kick in. Alongside food supplements, magnesium baths, pacing and mindfulness. It’s legal in this country if the THC (the psychedelic illegal compound) is less than 1mg per closed container.
Quick words of advice when buying CBD :
Strongest isn’t always best. Start low and slow.
Look for CBD with a good CBDa content.
Don’t cold turkey from prescribed medicine. Come off gently, as you feel you need and tell your doctor.
Never buy from EBay Amazon etc,
Never buy from a company making medicinal claims - cures, heals, lists conditions, if they don’t know the law, then they’re only after your money!
Look out for the Cannabis Trades Association logo - members go through rigorous compliance checks.
I’m not fibro free. I never will be. The flares aren’t as long or as intense.
But I’m off the nasties and not treating the side effects of side effects of opioids.
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Sianfiddle
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Just an aside on this ... CBD is not medicine and has been tested less than the sugar you put in your tea. Research in the UK has shown that quality testing is not holding up as amounts are not correct, some do not contain any or very very little of the active ingredient compared to what is listed. solvents included in products that can cause wheezing.
CBD is a wild west industry and I appreciate what the industry regulator is trying to do but its ethically suspect for companies to be selling on the basis of medicinal benefits but relying on the protection of its just a supplement.
Opioids are tested and are not the solution for all and have their issues but they do work for a lot of people as well.
des I think many of the people on this fourm would say that CBD has been invaluble.
Then it comes down to the question: What is a medcine?
I agree with your assertion CBD is a wild west industry and I would add that the profits are huge,,,, HUGE. This is however an unnecessary situation and could be addressed very quickly and very easily using simple legislation to create a standard for CBD up the quality and control the prices. Sadly that end play would no be in the intrests of big pharma in any way shape or form,,, for them more will never be enough,, and control of all is key to limitless profit.
Cannibis it's self has been used safely as a medcine for a very long time all over the world it is not a new invention.
Not all CBD products are equal and looking at the situation I think that a product that is as natural as possible would be more effective than much of the synthetic offerings of CBD alone,, EG Cannabinol (CBN), Cannabigerol (CBG), Tetrahydrocannabivarin (THCV) and Cannabichromevarinic Acid (CBCVA) are just some of the additional cannabinoids that are present in Full Spectrum oil.
Many myself included dislike mind effects associated with Cannibis, however it has been proven that when THC is in aproximatlye equal proportion to CBD the mind effects are very minute to non existant and certaintly not anythink like the horrible not to metion harmfull effects that some of the chemicals we are precribed hold in store,, but big pharma seem to get away cart blanche,
People are however becoming much more aware,, so much so that they are now educating themselves! They are not prepaired to accept the very selective words on the bought and paid for studies or the peer reviewed rags. They are also prepaired to search for the information much further than asking their Dr or Pharmacist,, or just looking on Wiki and taking those words as some sort of unbiased fact.
They are fed up with drugs that are killing them and frustrated at the attitudes of those in control.
Big pharma started and supported a war on natural methods and substances a very long time ago but they are loosing that war and with each day that passes people turn away from Alopathic Medcine and the chemicals it offers more and more.
Gone are the days of the Dr being a God even if many of them still try and while there are ardent believers in it's work I believe it is a religion and all religions need faith to survive.
I think it would serve us well to remember that so much in medcine is not fact but based only theory that are quite strangely viewed as fact,, and further it is an industry that is both visious and relentless in the persuit of profit, and while lobbists and the ever revolving doors and welcoming pockets of politicians exist it will always be a monster for profit and not a force for the good health of those it proports to help.
Ray
desquinnPartnerVolunteerFMAUK Trustee in reply to RayB
I am not saying that CBD is not or will not be helpful. But at present you can go into a high street shop or buy it online and what is on the side of the bottle is not what is in the bottle. The evidence level is not there at present either on its efficacy or the required formulation or application. Legislation and regulation is required.
As to your comments on doctors and pharma I respectfully disagree.
des It is a less than ideal situation at present regarding CBD many think all is equal or are guided by price or the words of the smiling assitant who is probably has as much indepth knowledge as the average customer,, which is sad!
I would have been disapointed had you agreed with my comments on pharma and the medical establishment, you have not dissapointed me yet!
That’s a sweeping statement- I can tell you everything about my bottle - what’s in it, the carrier, the terpene and cannabinoid profiles and where it was sourced.
Just for reference I am not saying CBD oil is not a good thing but that it needs more regulation and proper testing for the conditions that it may help. AFAIAA epilepsy is the only condition where there is some good evidence for its use.
my comments about it lacking evidence is for chronic pain and fibro specifically.
"A recent report by industry body the Centre for Medical Cannabis blind-tested 30 products advertising themselves as CBD, bought on the High Street and online. It found almost half (45%) had measurable levels of THC, making them technically illegal in the UK."
There is more investigative research into supplement sales as there are more concerns that they are not being sold as advertised.
As editorial standards go I am happy with the BBC.
There are over 20,000 papers on cannabinoids (see PubMed) so it is researched.
The things you read in the papers.. CMC who recently got mentioned in an article didn’t state whose products were tested or how they were tested or who, in fact tested them.
CO2 extraction doesn’t involve alcohol or solvents. So no wheezing.
Yes it is a supplement but it’s helping more people than anyone cares to admit.
16569 featuring cannabinoids as a search term but this includes THC, medicinal, medicine and may other aspects.
I want there to be research done on its use in chronic pain and specifically fibro but the evidence is not there yet. I am glad it is helping people but its also not helping people as we have reported here every time we have this conversation.
individual choice is fine but it is being represented as a medicine without the regulation which is something I find difficult to reconcile. If I was taking it and it was working for me I would still have the same opinion as taking it your self and recommending it are two different judgement calls. A health professional prescribing it is in another post code altogether.
In the U.K. it’s a food supplement not as a medicine unless it’s licensed to do so. There are only 600 papers on tetrahydracannabonol.
Regulation is in progress. The CTA is a stakeholder with both the MHRA and FSA. It’s membership has to comply to a struck set of Association rules. It’s a good start.
I have to laugh at the offical position of that questionably usefull organisation "Cancer Research" regarding Canabis,, it is ludicrous,, while you have the testomonies of an ever growing number of people who have had the faith to forgo the Chemo, Radiation, Surgery,, in many instances and more often those who have been given no hope are those most sucessful, they are not only still alive when they should have been dead from they cancer, but the cancer can no longer be found,, of course once they stop the cancer seems to return so a maintenance dose seems to be required which is no biggy as long as they can get the medication.
People need honest open information and to be treated with the dignity and respect they as entities deserve and should have a right to. The ability to freely make their own decisions.
We all have to go sometime,, from the moment we are born we are dying and one day we are garunteed our turn. I have always said that I would never accept what is termed "Conventional Cancer Treatment" and over the years I have become more and more resolved in that. Sadly most do not look at the options until it is to late then the panic and jump into the loving arm of oncology and welcome the rediculously priced poisons that burn through their veins, they accept them our of fear. Yet if only they had looked around and informed themselves years before ilness struck perhaps they would not have the fear, they would certaintly fare better without it!
The whole situation with cannibis at present is about profit,,, and protecting those profits however they can. No level it to low to stoop,, no lie is to big to tell. The propaganda machine it alive, well and sitting in the corner of the room.
Ritchie1268 in Pain Concern has written a post "The Total Destruction from My Prescribed Opiates." I have been told off for linking to another forum so I have written the address for cutting and pasting
Thank you John! A very intresting and worthwhile read.. I think his story should be a lesson to all of us,, somehow it is so easy to think that just because the chemicals are precribed that everything will be fine/
We have a negative echo chamber effect going on where the war stories are being repeated without the positive experiences. Forums are always more negative than real life as well as we come here for solutions to problems.
But the people that highlighted the US opioid issue i.e. the CDC have had to issue new guidance as people read their initial guidance and came to the wrong conclusions i.e hard limits or cutting off access to opioids.
Just wanted to say there are companies that provide lab analysis of their cbd products. Different strains work for different conditions and differently in every individual. Also worth noting that it's important for it to be organic.
True, and it’s important to see up to date third party lab reports as well as being organic. But also, the terpene profiles as some,if not most have an entourage effect too.
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Day 3 of quit smoking.
new to this site, but not new to fibro! 
Embarrassment of dealing with extreme pain 
Question Time at Nine (9pm) - Q2
