This is part two of a four- part series on Cannabis and chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). (Cort added pictures and captions.)
Getting started with Cannabis
Cannabis is used increasingly to manage complex chronic illnesses and inflammatory conditions, such as MS, fibromyalgia, and cancer. The scientific literature provides strong support for using Cannabis to treat these conditions, and suggests that it may help to manage many of the symptoms of ME/CFS.
For first-time users – and even veteran ones – figuring out which Cannabis products may help, rather than exacerbate, their own personal ME/CFS and/or FM symptoms can be a daunting task. People with ME/CFS and/or FM tend to be sensitive to medications and supplements, and Cannabis is no exception. Most people have to experiment with different strains and modes of delivery before settling on products that provide the most benefit. Exercise extreme caution as you are first getting started!
Cannabis dispensaries, cards, and laws
If you live in a state where marijuana is legal, the best source to learn more about Cannabis products is in specialized stores called marijuana dispensaries. Dispensaries are typically staffed with professional and knowledgeable “budtenders” who are trained to provide guidance on how different strains and products best align with symptoms.
In states which allow them, dispensaries can provide an excellent knowledge source (from https://commons.wikimedia.org/wiki/File:Cannabis_dispensary_strains.jpg)
Some states leave it up to each county to administer state Cannabis laws; some allow for dispensaries, while others only permit sales by mail order or no sales at all. If you find yourself in a “dry” county, try the next one over. Be aware that it is illegal to cross with or ship Cannabis across state (and international) lines, even when both states permit Cannabis. One exception is CBD oil made from hemp (see below). Be sure to research the laws in your state or country before you get started.
In states where only medical marijuana is legal, a medical marijuana card typically is required. Each state differs in how medical cards are issued, whether by doctors, such as a general practitioner, clinics that specialize in issuing cards or by mail order. Some states only allow Cannabis for a very limited number of medical conditions. The cost of cards varies by state, ranging from $35-$200. Even in states which allow recreational use, a medical card may be required to access higher-THC products. Medical card holders are often exempt from excise taxes, making it worthwhile to get a card if you intend to use medical Cannabis somewhat regularly. In general, Cannabis tends to be expensive, especially the higher-quality products.
Up until recently, there has been little regulatory oversight of Cannabis production, meaning in many places, growers can still dump unhealthy chemicals on their crops. While there is no official organic certification process for Cannabis (organic certification largely happens at the federal level, where the plant is still illegal), there are many trusted product lines that adhere to organic practices. Further, many third-party certification programs are cropping up in some states with legal Cannabis, assuring organic principles are followed during production. Pesticides, herbicides, and nasty solvents, such as benzene and butane, undermine the therapeutic benefits of Cannabis and should be avoided.
Sativa vs. indica ?
Three types of Cannabis, C. sativa, C. indica, and C. ruderalis (from https://commons.wikimedia.org/wiki/File:Cannabis_sativa_Koehler_drawing.jpg)
The taxonomy, or scientific classification system, of the genus Cannabis is debated, and scientists and users frequently differ in how they refer to the plant. All Cannabis is probably a single species – Cannabis sativa, with different subspecies, varieties, and strains. The genus Cannabis has three taxonomic “entities” that are used for medical purposes. In the popular literature and among Cannabis users, these include C. sativa (called sativa), C. indica (called indica), and C. ruderalis (known as hemp), as well as hybrids of these types.
One of the first questions a budtender will ask is whether you prefer sativa or indica strains. Sativa is generally thought of as best for daytime use because it allows for increased focus and creativity compared to indica. However, there are always exceptions with Cannabis, and some people get very sleepy on sativa strains, suggesting that individual trial and error may be required to know if sativa vs. indica strains suit you best. Some medical uses of sativa include managing anxiety, depression, and pain.
Indica, on the hand, produces strains associated with relaxation and sleep, making it a preferred choice for nighttime use. Medical benefits of indica include increased muscle relaxation, decreased nausea, increased appetite, and decreased pain.
Hemp holds a unique place in the world of medical Cannabis because it contains virtually no THC, but does contain CBD. For this reason, hemp can be used to produce CBD oil that is legal in vastly more places. Hemp products are also available by mail order and can be shipped to most states and some countries, including the United Kingdom (products containing more than 0.3% THC are typically illegal).
Under these three broad entities, there are hundreds of different types of strains sold in dispensaries. Some strains are from indica, some from sativa, and others are hybrid strains, or mixtures of the two. There are excellent resources online, like this site at Leafly that explore the various strains in depth along with the types of symptoms each might address.
How much THC vs. CBD do I want?
The strains vary in THC and CBD content, and this ratio is very important therapeutically. Most agree that some THC is important for maximizing the effects of CBD, and CBD can also help to counter the psychoactive effects of THC. Experimenting with different products and noting the THC: CBD ratio and the effects produced is likely the best way to find the best individual fit.
To get a product with what many consider the optimal 1-3% THC content, aim for at least a 20:1 (CBD:THC) ratio to maximize benefits of both cannabinoids, while minimizing psychoactive effects. Likewise, if interested in the therapeutic effects of THC, but not the high, look for products with a lot of CBD, such as a 1:1 ratio. In general, products with more CBD cost a lot more.
How do I want to take Cannabis?
It is also helpful to consider the pros and cons behind the many different methods for consuming Cannabis when selecting a product. Typically, Cannabis can be smoked, consumed as edibles, or applied as a topical cream, which can be helpful for localized pain.
Smoking
A vape pen (from https://commons.wikimedia.org/wiki/File:Vaping_-_Vaporizer_-_Vape_Pen_-_E-Cig_(24961321463).jpg)
Smoking is the fastest way to get cannabinoids into the bloodstream; the effects are apparent in moments. This is something to consider for acute flares of pain where waiting hours for relief may not sound appealing. The effects of inhaled Cannabis peak within about 30 minutes and taper off after 2-4 hours. It is far easier to control the dose when smoking compared to eating Cannabis because the effects are nearly instantaneous. However, many with a chronic illness may want to avoid the adverse health impacts of smoking.
In the last decade or so, vaporizer or “vape” pens (also called e-cigarettes) with Cannabis have become very popular and offer a safer option than smoking. (Check out some reviews here. )“Vaping” involves heating Cannabis concentrates to a temperature that turns its compounds into vapor. Cannabis vaping pens can be customized by adding in specific terpenes and other beneficial compounds. There is no combustion of flowers involved, which reduces harmful tar and carcinogens. For this reason, vaping is generally thought of as being safer, but even vape pens carry risks. As with smoking flowers, the effects of vaping Cannabis are almost immediate. If you go this route, be careful to check that there are no unwanted additives.
Edibles
Edibles, while better for your lungs, can take a long time to kick in, and the effects can be highly variable, even within the same person from day to day. It takes so long because it has to first pass through the liver, where it is metabolized. When Cannabis finally does kick in, it can really pack a punch, so be extra careful with edibles! Cannabis is more psychoactive when eaten because the liver converts Δ-9-THC into the metabolite 11-hydroxy-THC. In contrast, there is little metabolism of Cannabis in the lungs before it hits the brain.
Super brownies from Canada! (Warning! Yummy, but potency can vary widely. To avoid surprises be sure to start low with edibles.)
Due to this lag time, it can be harder to control dosing with edibles, with people often ingesting too much without realizing until it is too late. To avoid this, practice extreme caution with edibles, starting with doses as low as a few milligrams of THC until you get the hang of it. Try not to panic if you consume too much. The high from edibles lasts much longer (4-6 hours), making it is a good choice for both falling and staying asleep if insomnia is an issue. Fortunately, most states that allow recreational Cannabis regulate the amount of THC that is allowed in edibles, making an overdose less likely.
Full-extract Cannabis oils, called FECO, are also ingested. However, they are one of the strongest products on the market. Unlike other edibles, the amount of THC is not limited in FECO, and the potential for overdose is much greater. For this reason, a medical card is typically required for FECO (even in states allowing recreational use), and extreme caution must be taken, starting with very low doses (the size of a rice grain). People who use FECO are also likely to develop a high tolerance for THC, meaning that they require more to achieve a therapeutic effect. If you go this route, be sure to get FECO made with an alcohol (vs. butane) extraction.
OTC CBD Oils and other ECS Supplements
A variety of companies make hemp-derived CBD oils with low THC levels. The 2018 Farm Bill made these oils legal in all 50 states (but beware if you live in Idaho, Nebraska, and South Dakota). (Cannabis derived CBD oils are an entirely different issue; they are still illegal in many states. That issue will be explored in the fourth part of this series. )
There is a wide range in quality of these products (the FDA does not regulate them), and some companies are simply untrustworthy. For this reason, it is essential to seek products that are third-party verified; it is the only way to know what you are getting. Dosing also varies in these products. OTC CBD oil will be covered in depth in another Health Rising article, and ProHealth has a new page devoted to all matters CBD.
Other compounds can interact with endocannabinoids and their receptors as well. For example, palmitoylethanolamide (PEA) is a dietary supplement that has been shown to have anti-inflammatory properties on microglial cells (a specialized macrophage found in the central nervous system) and is also a strong inhibitor of mast cell degranulation. There is also evidence that PEA plays a role in pain management.
Oleamide is another compound produced by the human body and is also available as a supplement. It interacts indirectly with serotonin and GABA receptors and is used as a sleep aid. Likewise, it does not interact directly with cannabinoid receptors but does increase levels of AEA.
Research has shown many therapeutic benefits of terpenes, including inflammation reduction and neuroprotection. Many other plants are high in the same terpenes found in Cannabis, such as β-caryophyllenes (found in copaiba, cloves, pepper, and rosemary), myrcenes (found in ripe mango, hops, and lemongrass), limonenes (found in citrus), and pinenes (found in pine, rosemary, and sage), to name just a few. Essential oils made from these plants may also help many of the same symptoms that Cannabis treats.
Conclusion
Responses to drugs can be idiosyncratic in ME/CFS and FM and Cannabis is no exception. What may be a valuable treatment option for some may destabilize others. To maximize success with Cannabis, it is important to be very cautious at the start and have a willingness to experiment a little. Also, be sure to first check for interactions with other drugs. Because Cannabis production has largely been unregulated until recently, patients need to do their own research on the quality and safety of products being considered. Cannabis is not for everyone, but it certainly helps some. If Cannabis is not for you, perhaps exploring some of the OTC and essential oil suggestions could help relieve symptoms.
Health Rising’s ME/CFS and FM Cannabis Review Program
Tried Cannabis? Want to see how others are doing on it? What works for them? What to avoid? Check out the first Cannabis Review program focused specifically on people with ME/CFS and FM
Note that all answers are anonymous. There is absolutely no way to tell who provided what answer.
Health Rising’s Marijuana as Medicine for ME/CFS and Fibromyalgia Series
- Pt I: Marijuana as Medicine for ME/CFS and/or Fibromyalgia: The Science Behind Cannabis – Amber Ella
- Pt. II: Getting Started with Cannabis – Amber Ella
- Pt. III: Cannabis – More Than Just THC and CBD – Cort Johnson – the other health enhancing factors in Cannabis
- Pt. IV: The Doctor Speaks: – Moskowitz on Cannabis / A focus on variety / Stopping the Treatment Burnout Blues / How to quickly stop a high / What to do when CBD stops working
- Pt V: CBD OIl – A Primer for ME/CFS and Fibromyalgia – Finding safe and effective CBD Oil and more
- Pt. V: Strain Specific – Picking Your Plants – coming up
Some comments to above Conclusion;
1. The effectiveness of a medicine is based on statistical data not hearsay.
2. Usually a patient has no way to do research on a medicine. This is a job of scientists, specialists, experts of medical science community.
3. Patients should not be encouraged to do self-medication.
🙂 I have some counter-arguments:
“The effectiveness of a medicine is based on statistical data not hearsay.” – A future blog will address this but the effectiveness of a medicine is not based on statistical data; it’s based on the medicine. By that I mean a medicine can very effective without statistical data to back it up. Because most of the treatments patients use will never undergo those very expensive clinical trials we have to find out other means of assessing effectiveness: doctors reports, pharmacological reports, patient reports, clinical trials in other diseases, etc.
So few clinical trials have been done in ME/CFS in particular that patients almost have to attempt to self-medicate in order to make progress. To say they shouldn’t is to cut off a huge range of possibilities.
The data might be collected from different legit sources to undergo statistical analysis. We’re living in a big data era. We should believe in science, not pseudo science, even worse fake science.
“We should believe in science, not pseudo science, even worse fake science.”
I am a scientist with good credentials but I am with Cort here.
The biggest “research, data and statistics” based research we ME patients have is the 5M Pound PACE research.
That, according to 3 medicine Noble Price winners and the biggest statistical organization in the world to mention just a few, may be the worst case of fake medicine in decades.
Looking deeper into the countless reports of hearsay, anecdotal evidence and putting more faith in those then in this so called piece of evidence based medicine could have saved me from getting from moderate ME to needing a wheelchair and living hell on earth that bad I couldn’t have imagined it before.
Four years later and an epic and incredible harsh “do-it-yourself re-validation” later, I am still far away from having the relative health I had before this so called “benign piece of evidence based therapy called CBT/GET” utterly destroyed my remaining abilities and life quality.
So yes please, we all here would be thrilled to get our hands on real and working evidence based medicine. Reality is however that both homeopathy or Voodoo would have done far less damage to my and many others health then “the best in evidence based medicine” as this piece of crap is called by it’s authors and many many medical schooled supporters has offered and often imposed upon us.
At the rate my health was going down after this therapy, not looking in alternatives unfortunately was the only realistic way to not become bed bound or unable to chew and swallow my food myself or to speak in sentences. I started to have all of these plus I got increasingly more temporary paralysis.
I used to trust in evidence based medicine but when all one has is a spoon to to peddle forth a kayak then a spoon will have to do.
@dejurgen, your comment reflects a fake science disguised by research data and statistics. We shouldn’t lose confidence in science due to intentional/unintentional wrong research results, or malpractices, which happened so many times in history. If a scientist wasn’t able to make a correct judgement about something, then much less for people without such credential. So, don’t apply, advise anything before make sure there is true scientific evidence.
“We shouldn’t lose confidence in science due to intentional/unintentional wrong research results, or malpractices, which happened so many times in history.”
I do get your point. But when it comes to treating ME patients I easily dare say the average outcome of treatments prescribed by the self-proclaimed evidence based medicine are negative, especially if the patient hasn’t looked deeper in treatments, science and patient experiences himself.
The GET/CBT combo that is still supported by about half of the entire medical field worldwide to be the best evidence based treatment there is in the world is responsible for that on it’s own. But as a non-medical scientist I can attest that the amount of medical nonsense doctors and specialized doctors tried to sell me as evidence based when I can debunk that claim as violating basic chemistry or physics is shocking.
That helps to further push the average result of treatment (or simple disbelieving the disease and advising to ignore the very strong warning signals as they are just in the mind) negative.
So yes, I lost confidence that current science based medical treatments for ME holds more benefit then risks. If an entire field (ME treatment) achieves such poor and negative results on average then it has no place under the banner of science based medicine. End of discussion.
Eventually medical science will reach the point it not only gets a good ratio of success versus disaster but also trumps all other options for ME treatment. But if you lived hell beyond imagination on a daily basis then you’d likely consider to go for options that yield reasonable success to disaster ratios in the field now after you got a lot deeper into said hell thanks to wrongfully proclaimed evidence based medicine.
Pacing is one such option. It is largely developed by the collaboration of doctors on average yielding some results and the community of patients. Scientific evidence or large scale high quality scientific research on it is lacking. Yet it is our best tool to somewhat control this disease. And yes, according to many doctors there is the risk that pacing increases de-conditioning and worsens condition. According to double digit numbers of doctors promoting pacing also caries the risk of recognizing the disease as a physical disease rather then a mental disease they *believe* it is according to scientific proof. That, according to them, carries the risk of providing the patient with specialized psychiatric care.
Treating food intolerance is another example. Many ME patients appear to have food intolerance and it appears to badly affect their overall health. Yet for only a few food intolerances there is compelling scientific evidence it even exists, let alone that some treatments are effective. For me, fructose is a disaster. Eating about 200 grams of apple on a single day makes the color of my stool deeply red (due to rectal blood loss) for about two weeks afterwards and I can repeat this if I wished to do so.
So should I follow the scientific proven advice that eating more fruit is healthy and improves health or should I go with the unproven hypothesis that I am truly intolerant to fructose or at the very least to apples (other fructose rich foods give me identical problems)? Going against medical advise (eating very few fruit) means I risk putting my health at risk according to science based medicine. Yet I make a clear and experience based choice.
In my opinion, medical science has achieved huge progress for many diseases. Fighting epidemics, treating hart failure, diagnosing and treating cancer are improving expected life span and quality a lot.
But medical science needs to get a better grip on and knowledge of it’s own limitations. The field is full of believes that are accepted to be medical facts. The statistical methodology makes it *per definition* impossible to impose conclusions on all patients. Lack of proof and very often lack of investigation or funding is not proof of absence. These things need to be addressed first for poorly understood diseases like ME before patients regain trust in it.
Note that handing out advice and acting on it is standard procedure in many life critical services. Many procedures and methods fire fighters are trained in depend critically on it. Training is more then just handing out advice. And life of both fire fighters and civilians alike depend on it.
Nearly every large scale fire fighting simulating exercise is the combination of two things:
* train fire fighters in current methods.
* adapt and change current methods in order to improve future fire fighting methods; this adaptation is most often based on a partial observation in a N=1 case only. One can hardly call that evidence based.
Despite all of this, I very much would prefer to be rescued by a fire fighter trained in these experience based methods compared to have a fire fighter attempting to save me based on scientific proven methods only. I dislike near guaranteed failure. Good luck if you decided to take the opposite choice.
For one thing, we’re firmly on the same page; “If an entire field (ME treatment) achieves such poor and negative results on average then it has no place under the banner of science based medicine. End of discussion.” I started a treatment after consulting my PCP, it didn’t do anything, and then I stopped it after consulting my PCP again. Especially in medical science, something claimed scientific is not necessarily scientific. ME is so elusive, way more elusive than any other sickness. It’s tough for this community.
I have a question I’m hoping someone can help with. I want to know if there has been any research at all on the use of cbd and thc oils and possible risks such as psychosis and triggering latent schizophrenia? I’m the only person who seems to he concerned but I am very sensitive to supplements in general and would hate to be left with more problems and symptoms if I happen to be u lucky trying thc! The only research I can find refers to recreational use by smoking cannabis. I want to know if the compounds presence alone could trigger a reaction or if it’s only possible with higher doses and smoking.
Good question! My understanding and this article suggests that the possible Cannabis/Schizophrenia connection – which my understanding only may manifest itself in adolescence – is believed due to THC – https://www.webmd.com/schizophrenia/schizophrenia-marijuana-link#1. In fact, the research to date suggests that CBD – which counteracts THC – may help fight schizophrenia
They recommended
It’s wise for teens to avoid marijuana or delay using it until they are adults.
If you have schizophrenia, don’t use marijuana.
If you have a family history of schizophrenia or other psychotic illness, avoid marijuana.
If you are a caregiver for someone who has schizophrenia and uses marijuana, encourage them to quit.
There’s no warning here or recommendations about CBD.
“aim for at least a 20:1 (THC:CBD) ratio” – pretty sure you meant 20:1 (CBD:THC).
Yes, indeed! Thanks for catching that. I just fixed it.
Cuious how others are responding to THC/CBD. I realize the THC makes the CBD work better, but for me the dry painful eyes and dry throat/thirst last for too long; I’ve tried vaping, troches (edibles with 2:1 CBD:THC ratio) and the FECO (the size of a tiny grain of rice made me & another doctor I know very ill); so be careful. I just haven’t felt the benefits for pain or sleep. Anyone else have these symptoms issues? I’m having better luck with CBD-only edibles before bed. I find I’m sleeping more deeply.
Having had cancer FIRST before ME/CFS and living in a state where medical marijuana has been available for 20 years, I’ve heard A LOT about these products.
The points about using only organic products to avoid toxins, that different strains have very different properties, and vaping not being safe are all pertinent. It is also difficult to be sure you are getting the same plant material once you’ve settled on a strain, so you may not get the results you want.
There was a lot of consternation as recreational marijuana became legal in my state 3 years ago, with the medical marijuana users losing access to products theyd been using and their needs taking a back seat to the recreational market.
I was not crazy about a THC product and not thrilled about using any, but with the headaches and nausea I had with IVIG, my doctor finally convinced me to try a Colorado Hemp Oil product that is CBD and not THC. I’ve successfully been able to travel with it on 3 flights so far after carefully reading the rules – it’s hemp not marijuana and not THC. (A fellow cancer patient had a TSA dog find a marijuana bud in his pocket and had it confiscated on a Denver stopover on a flight between 2 other states with legal medical marijuana.)
I’m not sure that medical marijuana and hemp offer a cure for ME/CFS, but when carefully selected to manage symptoms without promoting fatigue and avoid toxicity, they can be helpful.
Thanks for providing balanced information on this topic.
Amber and Cort, thank you for covering this topic. I was a medical provider prior to becoming sick with ME/CFS and wasn’t too fond of medical marijuana due to my experience seeing many folks using the law just to get high (I suppose I might have too in my much younger years). My wife works in hospice and found that several of her patients did well on mostly MM tinctures with few opioids, which started to change my thinking. When I became ill I begrudgingly tried a low THC high CBD tincture out of desperation for my crashes as nothing was helping. I can honestly say that my MM tincture helps me more than any medication ever has. Just tonight I went from a 9 out of 10 crash to a 6 within 30 minutes of using my tincture. In two hours it will be down to a 4. For me it’s a lifesaver! As I feel drugged most of the time due to cognitive dysfunction I am not interested in the slightest in getting high. I use less than 1mg of THC and I don’t feel any significant psychoactive effects. Currently, I’m trying not to use it daily probably due to stigma, which is likely a mistake. I’d suspect that for me it holds the best chance of having a better quality of life than any other treatment. What a humbling and pleasant surprise.
to hell with stigma, there is hardly anything that makes us feel better. go for it. there’s no thc. what stigma?
Along with the good advice here, I would add not to expect the person selling you MJ products, even in the “medical” section, to know what they are talking about. I was directed to buy totally useless and expensive strains the first time I went to a shop in my legal state. I, also, get a terrible sore throat from anything with THC, even edibles, as Jane stated.
As for the psychosis risk, while it seems unlikely THC can trigger this in the average individually, I will mention that a patient of mine admitted for a stay in a psychiatric facility (depression) said there were six people on the unit who had been admitted in a psychotic state from MJ use. Anecdotal data but take it FWIW. Virtually every med and drug has some toxic aspects.
Me and three others have tried using CBD tincture 20 mg twice daily sublingual. for a period of 6 months. (We cannot use THC mixtures as these are still illegal in NZ). None of the four people reported any reduction in pain (fibromyalgia and fibromyalgia+low back pain). All four reported an improvement in sleep hours (fewer awakenings and longer hours of sleep). Three of the four reported reduced anxiety and irritability. Three of four reported increased muscle cramps and spasms one to two weeks after cessation and have returned to the CBD. So we await new laws in NZ that will make THC mixtures available on prescription.
I’m not surprised to hear about the sleep improvement, but it’s fascinating to hear with regards the cramps and spasms after cessation. Thanks for sharing your experience!
An interesting aside to my last post. While the people in our mini-study all had improved sleep there was no reduction in pain over the six months of taking CBD. Interestingly this suggests that the pain in FM in independent of sleep. ie both are almost independent symptoms.
One compounding factor is that all four people were taking acetominophen (4Xdaily)with the CBD. Needless to say that the acetominophen (paracetamol) is a poor analgesic in FM.
Thank you so very much, Amber and Cort, for this wonderful article! Looking forward to the next one and the next – very well done!!
Before, it seemed like endless debates about statistics and legalization, so I chose to take (legal) CBD products on my own. I do _not_ recommend taking risks like this, experimenting on yourself, except to find your best individual fit and combination as you mentioned. This is a case of do as I say, not do as I do. I simply felt I’d gathered as much research as anyone could, had the money at the time, had little else to lose, and low-to-zero risk factors as to schizophrenia.
I haven’t taken acetaminophen, ibuprofen, naproxen, OTC pain meds in years by the way. They didn’t seem to offer much if any benefit, only risk.
Maybe related to CBD, or maybe not… Recently I’ve found it do-able to change some amount of my self-talk, especially in the mornings, to a positive dynamic. This may or may not be due to the CBD use. Now I’m saying (or thinking), often pre-scripted, “Yes the pain is still there, but so what, I can have pain and still know that some days are better than others.” Or, “Well some days are better than others.” Or, “So what if I have pain/fatigue/PEM, people are out there making progress with ME/FMS, researching, or getting their lives back.” Unlike many of us, I’m able to take half-mile walks, and feel like I still have “a life,” part-time. So, “Yeah I feel the pain/fatigue, but I can have that _and_ have a life.” Or, “I can have a life with this.” Or, “I can text a friend today,” or “I can look out the window today,” or “I can order an audio-book from the library today.” Or ” I can meditate today.”
Here are my finding as to my use of CBD — my individual findings:
(1) CBD gummies help with sleep a great deal, for me – very reliable, almost 100% reliable but not quite 100% reliable. I still wake up with morning pain, but mornings are not as rough as before, and I have very, very rare if any days when it takes 6 or more hours to get going for the day. This is a good change! There are more days when it takes less than 3 hours to get going for the day, and most days it’s 4 hours or less to get going. This is also a good change. This says a lot in light of my profile of FMS/ME. It doesn’t seem to matter whether the gummies have a little THC in them or not, and I have not tried gummies that contain more than a single-digit percent of THC in them.
(2) There was a delightful surprise: I am able to focus better and tend to GTD more — Get Things Done — somewhat. During the day I prefer CBD products that contain a relatively broader spectrum of compounds, although I can’t make any scientific claims, this is only anecdotal info here. I’ve begun suspecting that the broad spectrum compounds in certain CBD products are helping with focus. I’m not functioning like my healthy friends, but I’m a little better at ADLs — Activities of Daily Living — such as getting a little laundry done, a bit better with food, dishes, general cleanliness, staying in touch with a few friends a bit better, and getting out a little.
(3) So far, fatigue and pain are continuing, but I have fewer major flare ups. I have had zero flare ups that lasted more than 12 days (2-3 that lasted 12 days), during 8-9 months of CBD use. I previously had flare ups that lasted 3-6 weeks. This is not hard science here, but I like this possible trend.
(4) One day I tried a ratio of mostly THC; all I did was sleep. This was a big toke of smoking recreational marijuana, and a medicine dropper of full spectrum CBD oil. In contrast, I read that as little as 100:1 of CBD:THC could be ideal — for daytime especially.
(5) As for nausea, which comes when fatigue is intense or when stress/anxiety is intense, nausea is milder and less frequent. But: when the nausea does get intense, taking additional CBD does not help me.
(6) For nausea, chewing pieces of fresh or frozen coconut helps. Disclaimer: This is not a CBD tip per se, but it’s still a decent tip.
(7) I take generic Wellbutrin, generic Cymbalta, .25 mg duloxetine at night, low-dose Dextromethorphan, 10 mg. Loratidine, generous doses of Boswellia and standardized curcumin — and CBD — daily. With this current “cocktail” it would take some doing to tease out the details of which substance is creating which result, so I only change one thing at a time, and wait 2-4 weeks, or more, to consider any positive results.
(8) Caution: quite a few CBD products contain polypropylene glycol, which I felt sick from (duh!), which I did _not_ wait 2-4 weeks to quit ingesting. Wish I’d seen that polypropylene glycol mistake before it happened!
Time will tell whether these results are typical, whatever typical is anymore. I’m a former hard-core statistics person, but some issues are very challenging when it comes to insightful conclusions via statistics, main stream medical research included. A lot of it depends on the interpretation and reporting. Cannabis together with ME/FMS is likely to be an (ahem) interesting frontier for solid data. We already know that ME/FMS has a wide, wide range of what the so-called experts think it is. It’s like the fable of the six blind men and the elephant!
Correction: I mentioned polypropylene glycol, an incorrect term when I meant to say propylene glycol. Propylene glycol is in some gummies, some vape liquids, a lot of factory-made grooming and “health” products and some foods. I got sick from CBD products that contain propylene glycol.
Polythene glycol is just Mialax. How can you get terrible sick on that?
You got sick from the CBT, so did I
I never thought I’d live to see the day when I could burn one on my front porch and not worry about the cops. Even so, discretion is always a good idea.
In the bad old days we took what we could get and were grateful to have it. Nobody I knew was concerned about genetics and so on. As long as it hadn’t been sprayed with herbicide, we were good to go. (In the 1980s the US government paid goons to spray cannabis crops by air in Central America. Many local farmers were poisoned.)
There’s no need to depend on unknown concentrates to use a vaporizer. I have a portable hand-held vaporizer that heats flowers. Good ones are expensive, but worth the money. When I wake at 3 AM with a migraine I don’t want to mess with matches, or especially, turn on the light.
I have found home-grown bud to be a good solution. I use a little hand-held grinder to blend a high THC variety with a high CBD variety.
Growing a few indoor plants is the only hobby I can do these days. The initial setup is not cheap – figure on probably $500 for a small tent, light, carbon filter, pots, potting soil, nutrients, etc.
There’s a rather steep learning curve as well. It’s not like growing tomatoes in an outdoor garden. One has to learn about male/female/feminized seeds and auto-flower vs. photo-period varieties. But it’s all good. Even with problems and sub-par yields, home-grown is still much cheaper than buying, and it’s usually much higher quality.
With some reluctance, I have to admit that Amazon is a convenient way to order growing supplies and have them delivered to the door, especially for those of us who seldom leave home.
jimells,
did you do a test crop of your seeds before you fully invested in growing your own supply? Btw, the estimated $500 investment you mentioned is lower than what I’ve spent in 8 months of CBD purchases. I think I know where I can get seeds, but no real guarantee of what types or quality the seeds are. You said “vaporizer,” which is not the same thing as vaping, right? Have you tried edibles with your homegrown?
Having recently had my physician/PA suggest Marijuana, and the despair with pain and inflammation, I am concerned with following this path………..
Although state laws have been changed to allow the medical use, Federal law still has this and too many other substances as schedule 1 drugs, with “a high abuse potential and no medical use acknowledged”.
As such, if used, the federal government can strip you of other fundamental basic rights and privileges.
It seems only natural that this “error” should be changed, but it was not in the 30’s, only more affirmed in the early 70’s, and today the lines remain to be blurred….. Certainly this egregious error must be corrected.
My wife used and benefitted from a high CBD to THC strain for pain relief. Yet, she also never felt sicker when after about six months usage, she suffered deeply from a bout of CVS (cannabinoid vomiting syndrome). She was curled in a fetal position for 2 and 1/2 days in steady, sharp pain, unable to retain either food or water. Thankfully on the third morning, when we were making arrangement to have our doctor admit her to the hospital for dehydration, she was agin able to take water. We learned that this CVS is becoming increasingly common. While my wife misses the pain mitigation, her pain and nausea were so excruciating hat she does not intend to risk taking it again. Our Doctor then informed us that the only way to avoid a repeat is indeed not to use it again. Be careful.
Possible that it caused liver stagnation. I use milk thistle products to keep the liver open, very helpful.
Recent study found CBD helps with pain however anything less than 25mg per dose was ineffective. Also those with pain say CBD works better with some THC. Before this study I bought a 30mL tincture in the golden state, and an absolute zero, no wonder the whole bottle contained only 15mg, but I got a senior discount.
Interesting. We actually tried the 40mg/ml Tilray CBD at 1 ml doses for a short period later in our trial but found no further reduction in pain levels. Which study are you referring to?
ElizabethKay,
Seeds are still a legal gray area in many parts of the world, but they can be ordered over the internet. Some people plant seeds that they get from wherever they can, and report success. It’s probably best not to discuss details here. I planted seeds and had mixed but worthwhile results.
Some of the medical cannabis organizations sell plant cuttings known as “clones”. With clones the grower knows exactly what they are getting. I have no personal experience with clones, but they sound like a good option.
“Vaping” is done with a vaporizer. There are many different designs. The common “e-cigarette” style vaporizers are made specifically to heat liquid concentrates. Dry herb vaporizers heat a chamber filled by the herbalist instead of using pre-filled cartridges.
Like the article says, it’s harder to regulate dose with edibles because of the delay after ingestion. Plus edibles are more work, so I stick with “vaping”.
Thank you, thank you! This all makes sense. I’m very glad to now learn about the dry herb vaporizers. Did not know about this method. I’ve spoken with people who like, make, and take edibles, but they are also intentionally taking in more THC than I would like, and yes indeedy, less control as to their dosing.
I live on the west coast where access to MJ has become readily available. I am working with a chronic pain specialist who recommends cannabis for many of his patients. I used CBD oil for many months without any noticeable difference. Once I added in THC I began to get some pain relief. I need to take a tincture with a ratio of 1:1 (CBD:THC)before I notice any pain relief. Unfortunately, I need to take enough that I feel the high or I get no pain relief at all. The largest drawback is the expense. I really am shocked by the high cost of cannabis. I don’t see how this is sustainable… especially for many of us who are no longer able to work.
Terri, you are so right. The cost is shocking. And not sustainable. Hoping for some grass roots change here. Yet another gap between the have’s and have-not’s, and this gap is in what looks like a great alternative to the dreaded Opioids. Offensive. I was not an advocate of marijuana use over the past few decades because it seemed to ruin many people’s lives. Now, in these newer ways (except for problems like CVS), marijuana is giving people’s lives back to them.
Terri, one more thing… you may be able to combine other plant substances or meds with your THC, your CBD, for better results and more reasonable cost. There’s some evidence that says CBD (or THC?) can increase the results of mainstream prescriptions or other remedies. This is a new frontier in treatment, research is threadbare, and practitioners are not common. I only wish we knew which things to try for which people. ME and FMS could be a bottomless money-pit if we had the money.
Thanks for the extensive reporting on cannabis use Amber and Cort. The information goes way further then what is often written.
Today I read an interesting article. I was titled “people need physical exercise in order to stay healthy”. Don’t worry, I want ever promote GET as I am a victim of it myself.
The research came from a scientist who went studying primates like chimps and gorillas. He expected them to be really active climbing trees, jumping from tree to tree, chasing other monkeys, hunting and that he would have a hard time following them to observe them well… …yet was utterly surprised that all of them were “very lazy animals hardly doing anything at all”. That held for all the primates he studied.
Later he saw that all of them had a lifestyle that was very local and a big portion of their food didn’t move at all e.g. it was mostly fruit and plant based.
Humans in the past million plus years did move each day and had access to a much larger foraging area this way. They also hunted animals which are a lot harder to catch then nuts or fruits. That allowed humans to become more successful and spread to areas other primates couldn’t survive.
That lead him to the following conclusion: humans are made to exercise and need to do so in order to stay healthy.
He saw that humans had larger leg muscles then any primate, had much more slow muscle fibers in them, had a lot more RBC in their blood and had a far faster metabolism and with it according need for food then any primate. Exercise according to him was even essential to have and sustain a bigger brain.
The link with this blog came when he mentioned that moving produces endocannabinoids and our body needs them to feel good, ward off depression, control inflammation… and further referred to the runners high. He didn’t mentioned it explicitly but he implied that you needed to exercise, not run, to get sufficient of these chemicals.
That links to my slow but steady improvement as well. Much of it is based on improving blood circulation. Blood circulation is another thing exercise has a clear impact on. The leg-blood pump is just one example of it.
Combine that with the fact that prehistoric nomadic people had to move from place to place on a near daily basis to survive. Those that couldn’t walk enough had to be left behind. So for many many millennia not being able to walk enough equaled to having a very short remaining lifespan.
Nature is often very economical. Functions that are supported by daily exercise didn’t require much of a backup as not being able to exercise for more then a few days meant quick death anyways. So why would the body build an extra strong hart and blood circulation if the moving the legs contributed to it?
Likewise, if the body produces endocannabinoids when exercising, why would it need the ability to produce sufficient amounts of it when not (being able) exercising for days?
In this hypothesis the reason why CBD/THC may work may be because not being able to exercise means we simply lack the infrastructure to produce sufficient endocannabinoids ourselves.
And the reason why supporting better blood flow helped me so much may be because we lack the proper infrastructure to have good enough blood circulation if we cannot exercise sufficient.
So maybe better understanding ME/FM requires to better understand what “functions” we humans lost in part during our evolution, functions that were replaced by what daily exercise did for us.
Doing so may help us to better know how we could “supplement” the chemicals we can no longer produce ourselves when exercise intolerance hits us and it could help us understand what “functions” we can support to better support our full-bodies health. It may also help us better understand what can help us breaking the vicious circle so prominent in our disease. For those who still doubt: no, I don’t say exercise more but replace what our inability to exercise costs us. This idea may help to focus ME research on key chemicals and biological functions to be researched just as well.
dejurgen,
both or your posts on this subject are very insightful and well said. I must add to your comments by mentioning (1) “Pascal’s Wager” and (2) certainty bias. Certainty bias is a term credited to neurologist Robert Burton. Both of these concepts have to do with … What is the downside, the risk, if one’s assertions are flawed? Apparently the PACE research and GET promoters had no sense of examining a complete picture of their trendy, fake, remedy du jour, such as checking for or considering the possible harm to the very people they claimed to be helping. This also overlaps with the so-called Hippocratic Oath (“First, Do No Harm”). Many of us had the huge -egregious – misfortune to be harmed by the PACE research and CBT/GET. That was not only scam research and scam “medicine,” that was a giant, $5M pound scam that caused large, unknown numbers of our ME population to be dramatically harmed. Fortunately, some of us such as you, dejurgen, can still use our minds to sift through our options and strengthen ourselves to some extent, but the damage from sham research has already caused harm on a large scale. Come to think of it, there are people out there, still, advising GET (and getting paid to do so!), and succumbing to the so-called promise of GET. What a shame.
I just rec’d a big box of homemade edible caramels from a my sister’s friend. I ate 1/5th and felt very sleepy yesterday. I will try some before bed tonight – that would be amazing if it helped with sleep. I will report back if success.
Thanks for sharing useful information. keep sharing
Thanks for sharing useful information. keep sharing