CBD. Is it effective for Fibromyalgia? - Fibromyalgia Acti...

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CBD. Is it effective for Fibromyalgia?

Calliope62 profile image
13 Replies

Hello!

Has anyone had any success with CBD products for fibromyalgia pain? If so, which ones and what strength? I have Graves disease, Fibromyalgia and IBS (since 2010). As an aside, Graves was the only issue I had until I also developed Thyroid Eye Disease (TED) and was given high doses of steroids to control the inflammation. As a result I had Cushing's syndrome and then the IBS and Fibromyalgia kicked in. I am convinced that the Fibro/IBS problem arose because of this. Has anyone else had a similar experience?

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Calliope62
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13 Replies
casper99 profile image
casper99

Hi, some people get relief from them but, they didn't work for me. The THC is taken out but, it's needed to make it work.The real cannabis butter/oil works but, I only take it at night, for obvious reason and it relaxes my muscles and helps me sleep and is natural. X

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply tocasper99

The natural aspect as a positive always confuses me. I know where people are going iwth it but chemistry is chemistry and a peanut is about as natural as a thing you can get but kills!!!

Also from Neil DeGrasse Tyson

"There’s a pervasive chemical in the environment that’s a potent solvent. Found in acid rain, it will asphyxiate you if it enters your lungs. Its vapors can cause 2nd degree burns, it’s a greenhouse gas, and it’s also found in most foods.

That chemical is called…

Water."

Efficacy, application, and safety are important but composition and source are much less so.

JayCeon profile image
JayCeon in reply todesquinn

Yep and deadly nightshade and so on.... and everything is 'chemical' anyway... :-P

Perhaps hearing the word used in a positive connotation only confuses you because you are fortunate enough that synthesized meds don't harm you...? :-)

Synthesized meds generally (80%) harm me, often seriously (pain not death ;-P), 'natural'/herbal meds don't (10%), supps even less. Hurt me less than a lot of food (50%)!

So it's natural for me to think 'natural' in the sense of herbal meds is positive... however exact the term may be...

That said: CBD oil did harm me :-P - drowsy, zombified, needed more sleep. Same as amitriptyline, but that gave me +7 side effects... Both did nothing for pain, no meds or herbs or supps did. So natural is of course no guarantee.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toJayCeon

You are making my point for me that the efficacy and safety of the compound is the important factor and not that "natural" chemicals have some innate benefit. They can be just as dangerous for some people and interact with other meds just as much as their chemical cousins.

Chemotherapy is the best example of a chemical compound that's benefit outweighs its safety profile. For a healthy 20 year old you would never give it to them but the 40 year old suffering with cancer it can be a life saver and worth the risk.

Vendors pushing supplements and compounds that are not tested to the same extent as their chemical cousins. But the use of the talismanic word natural is more marketing than probative in my view.

JayCeon profile image
JayCeon in reply todesquinn

Again agreed - mostly! - Claiming efficacy and disregarding side effects is a problem, while I think that vendors just use the belief in the talisman which is the real root. Not necessarily evil, because placebos are pretty effective meds (as opposed to nocebos) - at least if the side effects really are minimal.

But whilst 'they can be just as dangerous' is of course true, it seems to me to disregard the proportions and the context of use. I'd argue that if used as handed down, they are generally/usually/probably much safer. Less side effects doesn't mean none, tho. My body will find them too. ;-(

I read 'natural' as probably less efficient, but also having only few side effects, considerably less than synthetic meds, if used as handed down. That's how I understand casper99 above. In that sense I thought and hoped it'd be safe and efficient for me. It wasn't, but that still doesn't make it being 'natural' a wrong or even fraudulent claim to me.

Just wondering how 'natural' most CBD oils really are... I think mine was - if that part wasn't a fraud - but that's another can of worms, be it in a similar vein. ;-)

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toJayCeon

the process of synthesis of the CBD is a good point as there is as I understand it a lot of discussion around the use of oil and one process is much safer than another!! The blanket of natural is safe and companies producing natural products are all good and all pharma is evil is a false notion.

Approaching treatment there are a number of methods.

# No risk / harm - homeopathy, placebos and acupuncture are in this bucket as they will not make you worse.

# Risk / Benefit analysis - CBD, cannabis and pharma will (should) be in this bucket as their efficacy against their risk is assessed. Individual risk and choice as opposed to mass use and benefit over individual risk is crucial here. Cannabis is a good example in here of a natural product that can cause psychosis and damages younger brains. And in this compound there are a wide range of strains with some a lot safer than others or some are potentially have more risk like the skunk strains for example.

# Then things that are exclusively pharma that are almost in the Hail Mary category or just below. Where risk against death is being weighed up. Chemo is in here as it would not be given unless someone has no other option.

Again medicinal cannabis is a good fit in here as its use for epilepsy in young children may give them longer term developmental issues but quality of life and damage from seizures or other possible meds need to be considered.

Again, just to put the point that natural is just a compound that nature put together and its risk / benefit needs to be considered without the natural bias coming into play. Also an individual choice as a opposed to a society choice has different metrics.

All of this is really about ethics.

Zivago74 profile image
Zivago74 in reply tocasper99

I also find the "brownie' good for sleeping but cannot be sure about effectiveness of drops during the day.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

CBD is type of cannabinoid – a natural substance extracted from the cannabis plant and often mixed with an oil to create CBD oil. It does not contain the psychoactive compound called tetrahydrocannabidiol (THC) which is associated with the feeling of being ‘high’.

Research in cannabinoids over the years suggests that they can be effective in treating certain types of chronic pain such as pain from nerve injury, but there is currently not enough evidence to support using cannabinoids in reducing pain. We welcome further research to better understand its impact and are intently following developments internationally.

CBD oil can be legally bought as a food supplement in the UK from heath food shops and some pharmacies. However, CBD products are not licensed as a medicine for use in fibromyalgia by MHRA (Medicines and Healthcare products Regulatory Authority) or approved by NICE (National Institute for Health and Care Excellence) or the SMC (Scottish Medicines consortium).

We know anecdotally from some people with fibromyalgia, that CBD has reduced their symptoms. If you’re considering using CBD to manage the pain of your fibromyalgia, it’s important to remember it cannot replace your current medicines, and it may interact with them, so please do not stop/start taking anything without speaking to a healthcare professional.

Cannabis Medicinal

This is medicine formulated in the lab using the cannabis plant as a base. It has went through clinical trials and been shown to work on certain conditions. It is tightly licensed due to being a cannabis medication. Limited trial evidence so far of its efficacy with fibromyalgia. An example of these types of meds would be Sativex.

Medicinal Cannabis

This is the cannabis plant grown in a controlled environment with a view to patients receiving the same, consistent dosages that would be expected with a pharmaceutical drug. Often this product is used as part of the process for cannabis medicines.

It differs from street cannabis in that it is the same strain, dosage, and therefore expected effects during the prescription or manufacturing process.

While there is anecdotal evidence of street cannabis being used by patients and helping with their pain, there is a lack of evidence in a clinical setting. It must be noted than even with recent changes in UK scheduling it is still a risk of a criminal record if street cannabis is sourced or medicinal cannabis is brought into the UK without a UK prescription.

Current Confusion in NHS, Government and patients

As the advocacy voice for people living with and affected by fibromyalgia in the UK, we encourage dialogue between government policy makers and clinicians to determine the value, real world evidence and planned patient access to medicinal cannabis products for the treatment of pain. We are advised by many of our members who live with pain, that cannabis improves their quality of life, and that they desire being able to access these treatments legally. We agree that evidence is limited at the moment and we call for investment to research in this area in greater detail.

LoneEra profile image
LoneEra

I've tried it, but it didn't seem to work for me either. Some people on here use the oil, others use CBD patches, and find it effective. Hopefully someone who finds it beneficial will come along and answer soon!

LisaSnow profile image
LisaSnowFMA UK Volunteer

I use CBD topicals (oil and gel) but I do not feel comfortable taking oral CBD or any cannabis-base supplements. Too little data to convince me that the interaction effects with other pharmaceuticals that we take are safe.

athenadark profile image
athenadark

It didnt help me for my fibro but did help settle my ibs but it's a your mileage may vary sort of thing, I would say absolutely if you are going to try it, and a few months dose is the only way to try, starting at the lowest and if you get some relief work up, make sure you're getting actual CBD oil, most of what is sold is hemp oil which is great for your joints in the same way cod liver oil is but absolutely useless for pain, they come from the same plant but the way they're extracted is very different and most of the good stuff is gone [like cold pressed coconut oil and mass manufactured coconut oil], that is the reason for the huge spike in priceI used the Jacob Hooy stuff from holland and Barrett and as I said it helped with my ibs but I'll be honest, it tasted rank and there is no dosing information and everyone online contradicts each other as to whether you took it as needed or daily or several times a day and how much

there is quite a lot of evidence come out in the last few years that cannabinoids are just all around good for you, [a lot of the problem is with other stuff its sold with, how its produced etc] but those studies are going through the lengthy process of being investigated for long term use etc

all i can say is try it for yourself and see, because it might be a wonder drug for you, I've heard of people who swear by it and were able to reduce their prescriptions and others who might as well have been taking olive oil

FibroJo79 profile image
FibroJo79

The CBD oil isn't as helpful as smoking is for me. But, it knocks me out, so only at night. I currently live in a country where I can no longer get it, but if you can go for it!!

Makie-Uppie profile image
Makie-Uppie

Everything everyone else has said, just to add I found the medical chemical ineffective, CBD oil was helpful for sleep and the whole plant especially flower buds helped with sleep and headaches. Not much effect on anything else but it was worth a try, since I have no regular access to Cannabis/grass/weed that has not become a habit but it did work.

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