• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Success story...

Messages
25
Hello all!

I have been following these blogs and these forms about chronic fatigue syndrome for months now... I am happy to report I have a success story.
Yes I still have cfs. Yes I am not 100 'normal', I am not 'cured', so to speak, BUT I do live an entirely different life then I used to. About a year ago, I was bedridden, needed help with just about everything, showering, cooking my meals, shopping, tending to my hair, etc. Now I am able to care for myself and am starting to look for a job. I am no longer in bed, I am up for most of the day, no fog, no headaches, minimal pain, minimal PEM (mine lasts only 12 to 24 hours now)

The most important thing in my recovery has been cbd. No single supplement except a mega dose of b complex has ever touched my energy levels, headaches, brain fog, PEM, or pain. I really truly encourage everyone to just test out cbd. Especially if headaches and brain fog are your worst symptoms, cbd made them completely vanish. My mood is in high spirits as well. I have suffered from depression long before I was diagnosed with cfs...but now it is gone. I also take a variety of other supplements such as vitamin c, vitamin d (I was found to be very deficient), l carnitine fumirate, 3 capsules of a vitamin b complex, magnesium malate, fish oil, flaxseed oil, proboitics, rhodiola, tumeric, and coq10.

Every morning I also have a pea protein smoothie with BCAA, potassium, and fiber in it. I AM on a certain lifestyle diet. I eat lots of protein, vegetables almost everyday (I get the frozen veggie mix from Costco, nothing fancy) and of course all different fruit in my smoothies. I also stay away from carbs. They are not completely out of my diet, but most of the time, I say no to bread, pasta, potatoes, etc. I have never done any exercise pacing, never attended a program where you change negative thinking into positive thinking, no meditation or yoga, and never EVER any antidepressants or anti anxiety medication like xanax or klonopin.

In my opinion, medications like that make things a whole lot worse. Anyways, AGAIN, I encourage everyone to try cbd. I am personally well knowledged on the subject, as there are LOTS of things you need to know about it, as it IS a medication, and not all cbd is created the same and there is a certain way it must be be taken to be effective...i am so truly happy with how my life is today, I really needed to write this on this forum. Thank you everyone and have a beautiful day.
 
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hmnr asg

Senior Member
Messages
558
hi there and congratulations on your recovery,
But as with most posts like yours (i.e., I cured myself with X or Y) I am curious as how you can be sure about the causal relationship between "X" and your improvements. If you were not sick for long, it could have been that you had an acute illness and just gradually got better by time. Maybe without ANY of those medications you would have improved as well? CFS disease progression is very unpredictable.

I take CBD oil everyday and it does nothing to lift me out of my nightmarish brain fog (and i live in california where marijuana is legal and i take the best CBD oil i can get). The only thing my CBD tinctures seem to be doing for me is giving me some relief from anxiety. But other than that, nada.

Anyways, the good news here is that you have recovered and are about to re-enter world as a healthy person. Congratulations again and i hope you the best of luck.

H
 

Diwi9

Administrator
Messages
1,780
Location
USA
@Pinetree53 - congratulations on your health improvement, I hope it continues for you. Also, thank you for sharing your experience. I have a few questions. In what form are you taking CBD, how much do you take, and how often?
 
Messages
25
Hello all! Thank you for the questions
One thing I would like to point out is that I'm not cured. I still have cfs. I just live a much much better life then I did previously. I have been sick for 6 years.

Second I use a specific brand. It's made in Vermont. It's called greenmountaincbd and it's their salve. It's $30 a jar. They give you a little scooper.
Things I like about them are
-they use coconut oil extraction, one of the only companies to do so. My personal thought is that co2 extraction (which a majority of companies use) is a problem when extracting cbd as it leaves out important chemicals.
-they're cheappppp
-they post pictures of their hemp crops

Things I learned about cbd
-sublingual(under the tongue) is the best method if you don't want to smoke/vape it
- ALL companies say 'hold under tongue for 60 seconds' but that simply is not enough time for the cbd to absorb. My optimal time is 10 minutes sublingual . I mean, if your holding a b12 under your tongue, is 60 seconds enough time for it too absorb? Not at all.
-yes, it does have to have a tiny tiny fraction of thc in it, or else the cbd wont work, but the thc in it will in no way get you high

If you guys have any other questions, PM me because I personally know alot of failed cbd stories and it was only because they weren't using it properly or used the wrong brand/type.
 

5150

Senior Member
Messages
360
@Pinetree53 - I'm really glad to hear this! I tried CBD oil for sleep last year and it didn't do much. But we're all different of course.

What brand do you take? and what is the certain way you think it should be taken to be effective?

I have this same question, especially about a "certain way to be taken to be effective".
Thanks.
 
Messages
25
The 'specific way' to take it, is picking the right brand, which I mentioned above, sublingual. not eating it, as bioavailability is only around 10% when taken orally. and held under the tongue, sublingual, for 10 minutes, as opposed to 60 seconds manufacturers reccomend.
 
Messages
25
Also i take 20mg of cbd, once in the morni ng and once at night. However different people beed different dosages, titrate by 10mg until you get the dose your body needs.
 

overtheedge

Senior Member
Messages
258
I too have had good results from CBD, only used it a few times and haven't finished testing it due to circumstances but it was powerful enough that I still felt good from it a week later and that was from just a few doses

Be cautious when returning to work after CFS, I went back to work within a month or two of my health returning, albeit my health only mostly returning as I figure there was still a good bit of improvement to be had if I had continued to take it easy, but I felt great compared to how I had been. The first time I got well my energy was enough that I was able to attend college with a full courseload and do plenty of other energy consuming things besides for 5 months before burning out right before finals and having to spend seven months in a chronic fatigue state. I finally recovered at the end of that and decided I had better get back to being productive so started working a part time job which slowly ate away at my health for a year until I just didn't have anything left and had to quit. Now I've been stuck mostly in bed for four and a half years. I continued to take the meds which made me better in both cases but they weren't enough to keep me well when I faced the continual strain of school/job.

That's the thing that gets me about working is that it seems a never ending thing, even though i had four days off a week in the case of the job it wasn't enough for me to be getting enough energy to get better or even stay the same and even taking a work week off here and there wasn't enough to change that, the onslaughts just kept coming.

Would have been really nice if I had been different and able to work and improve health wise simultaneously, it really sucks, burning out those two times are the worst things that have ever happened to me, the pain and desperation were incredible and the after effects that I'm still caught in.

But that's just me, your circumstances may be very different than mine to where work is the ideal choice

My 2 cents
 
Messages
25
Did you use the tincture or the salve? Because their tincture makes me sick too. It has chocolate and mint in it...yuck.
 
Messages
25
@Pink I do not think it was greenmountain cbd you used. They just recently came out with their tincture only a few months ago. The only flavor they came out with was the chocolate mint. Unless your talking about the salve.

@hmnr asg I looked on their website. I couldn't find any lab results that tell you exactly what is in their product. I couldn't find the exact mg of cbd on any of their bottles, only ratios of cbd to thc. Red flag to me. I'd try green mountain or cbd distillery.
 

hmnr asg

Senior Member
Messages
558
@Pinetree53
I have heard that good CBD comes from the flowers rather than the leaf, im not sure if there is anything to this.
Also i have heard that you need a bit of THC in your cbd oil. are the brands you suggested meeting this criteria? I might make a switch in that case.

Also last night i tried and tripled by CBD dose and kept them much longer in my mouth , and this morning I woke up feeling MUCH better. Not sure if this result is reproducible but I will keep everyone posted.

H
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
The 'specific way' to take it, is picking the right brand, which I mentioned above, sublingual. not eating it, as bioavailability is only around 10% when taken orally. and held under the tongue, sublingual, for 10 minutes, as opposed to 60 seconds manufacturers reccomend.
Have you tried vaping it? I wonder about the comparative efficacy?
 
Messages
71
I started using cannabis for arthritis pain. I get the Kiva chocolate bars. It's great for the pain and for making me feel good and sleep well. I get a hybrid (both cbd and thc). I take it after dinner so it doesn't interfere with my day. It hasn't helped my ME/CFS symptoms though.
 

Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
Hi @Pinetree53,
I may give this a try. It appears to reduce inflammation, which I feel is causing me a lot of issues.
Is this the correct product?
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Would you happen to know if this product is damaged by heat? Shipping to AZ in the summer is an issue. It is not uncommon for temperatures in the back of delivery vehicles to reach 160 degrees for short periods of time and 110+ for extended periods of time. This creates many problems for shipping supplements, prescription meds, food products and even some soft plastics. I have had some deliveries arrive with the actual product in excess of 120 degrees. Also had a prescription med that was packed with ice pack arrive with the medication at 112 degrees.

Thanks for your input.
Dan