How can we get people to understand fatigue is not being tired?

[MNK99]

@Nina. I've been a night owl since I was a little kid.
It was partly bc I could only focus when there was risk/last minute pressures, and got all my homework done late at night.
Addictive behaviors even as a child, like video-games. I'd go to bed at midnight at 12 or so and wake up (barely) at 6 or 7. As I got older teens and twenties - it got worse. But for 5-6 years I was "fine" like that. It was stressfu though. When I had mechanisms to focus it was much better -- but I still slept super late and tried to "catch up" on wknds which is not really possible.

But, in university and in work -- yes it wasn't "ideal", but I was healthy as a night owl and sometimes unhealthy. The most productive and most fun I had was with insomnia/night owl-ness. But not always. @Nina you became a night owl only after CFS? I got healthy in my teens and yes i slept more after working out at times, but still it carried on. It is returning a bit but I must try and force myself to wake and sleep at a certain time. For me, sleep hygiene/structure has always been an issue. Partly bc its hard to stop thinking.

 

[Nina]

[mention]MNK99[/mention]

Yes i became a night owl around the same time my CFS started. I noticed i had more energy and felt pretty good at night, so i didnt sleep and got some extra work done during those times. Would be dead tired the next day though. I also have addictive tendencies, including videogames which i fully quit. Also attracted to alcohol and drugs which i both also quit though.

 

[Area-1255]

@MNK99

Yes i became a night owl around the same time my CFS started. I noticed i had more energy and felt pretty good at night, so i didnt sleep and got some extra work done during those times. Would be dead tired the next day though. I also have addictive tendencies, including videogames which i fully quit. Also attracted to alcohol and drugs which i both also quit though.

I stopped playing video games for the most part, when I realized how being productive is much funner.

 

[AC3C]

Dr Myhill is one of the best doctors in the UK for treating chronic fatigue. She is involved in research, self help books and her patient book is full. Her website and books are very good and have really helped me in dealing with fatigue and muscle aches. I used to be run down and yawn all day every day but not anymore.

 

[Canari]

Dr Myhill is one of the best doctors in the UK for treating chronic fatigue. She is involved in research, self help books and her patient book is full. Her website and books are very good and have really helped me in dealing with fatigue and muscle aches. I used to be run down and yawn all day every day but not anymore.

I agree and mentionned her before! I knew her website through an ex member of RPeat forum who could not convinced other members and let it go... Her free wiki is a gold mine, and can also help to understand that this fatigue is not like being tired and making an effort!

 

[bruschi11]

Re: How does chronic fatigue feels?

<r><QUOTE author="Nina" post_id="2987" time="1509293419" user_id="126"><s></e></QUOTE>

<br/>
I think this is what people are most surprised of when I tell them I'm sick, they see me being super motivated, getting a lot done, having high energy, but then they don't see me when I crash and when my energy is just shot for days or weeks at a time. It's completely exhausting because I feel almost like I'm lieing- like I am not the young, healthy, active person I put out into the world and I feel as if I have to hide away the defensive, "safety mode" version of myself because people don't understand what it's like to have this burden.<br/>
<br/>
A good friend the other day said "why don't you be the person you were last week?" like I had a choice in the matter. I've bargained with myself before, wished I had cancer or something instead of what I'm dealing with just so I could get people off my back when it seems like my body is shutting down.</r>

This is pretty amazing that you posted this on November 1st and you're feeling the way you do now @Rid seriously good for you man!

 

[Rid]

This is pretty amazing that you posted this on November 1st and you're feeling the way you do now @Rid seriously good for you man!

thanks man, i'm lucky that I tried to hop on CDsnuts right away after crashing and probably saved myself a lot of time, even though I messed up a lot along the way. not sure if you remember me from swolesource, but I remember you from there, a lot more of my journey is on that website. i went by ridd on that site.

 

[bruschi11]

thanks man, i'm lucky that I tried to hop on CDsnuts right away after crashing and probably saved myself a lot of time, even though I messed up a lot along the way. not sure if you remember me from swolesource, but I remember you from there, a lot more of my journey is on that website. i went by ridd on that site.

I went on swolesource briefly when I was stopping TRT last Feb/March. Man I was in a horrible place then.

I was mostly on solvepfs where the whole forum now pretty much hates me for spreading GBOLDs views and my story lol. It's like people can't handle a success story- they think this is all unbeatable. Guys on solvepfs want GBOLD's stuff to fail. They are literally rooting against us here its incredible.

 

[Rid]

yeah man, I can't exactly blame them for being so fucking scared and closed minded, this is a hard disease and people want answers. simple truth is we just don't know much for sure. I'm lucky that I'm getting better, but I fully accept that it could be just time or whatever other factor. I believe that what I've learned here and what I've been doing in other's success stories are contributing to my recovery. all our success stories have similar happenings, but ultimately we don't know what's really going on. that scares people into bad mindsets. I think most of the other post fin forums are filled with broken people who have given up, and places like this and swolesource include those who are fighters and wont accept their situation. different mentality, but I can understand both sides of it.

interesting, I just noticed you were backing me up in a conversation on solvepfs (go by quest there)

thanks bud haha

 

[bruschi11]

I had a feeling that was you. I'm stopping posting there beyond my blog (I swear!)- exhausted myself the last couple days, got nothing done at work haha. Feel pretty bad about myself wasting time there. I'm just so passionate about how far I've come and what it took to get here along with the effects of what GBOLD has proposed and how much they have helped me.

I don't know when you got PFS, but I guess I got it at the right time. Worked on my pathogen issues for a few months before this forum arrived out of nowhere. Now working on both PFS/pathogen issues simultaneously. All working out but man what a crazy path this has been.

 

[Rid]

you should be passionate man, unfortunately those places will just sap that positive energy. it's not worth it. it's a shame that our communities must split so much when many could benefit from more positive communities like this one, but we can't do anything about that. I've been following you for a while, as I have with a lot of the guys who crashed around the same time as me.

my initial crash was maybe oct 2016 followed by a really bad crash in february 2017. it was all kinda up in down until I started seeing consistent progress in maybe late nov or early dec 2017. just noticed we registered 2 days apart on solvepfs ha!

 

[wuf]

CFS - The Central Cause: Mitochondrial Failure - DoctorMyhill

@gbolduev would you reccomend D-RIBOSE supplements for chronic fatigue?
Now I am folowing the "Health protocol.." but I am just wondering if to let this fatigue desappear could be a good idea to add it to the stack.

11 Incredible Health Benefits of D-Ribose - with Side Effects - Selfhacked

 

[TubZy]

I went on swolesource briefly when I was stopping TRT last Feb/March. Man I was in a horrible place then.

I was mostly on solvepfs where the whole forum now pretty much hates me for spreading GBOLDs views and my story lol. It's like people can't handle a success story- they think this is all unbeatable. Guys on solvepfs want GBOLD's stuff to fail. They are literally rooting against us here its incredible.

That place is a toxic depressed hell hole. People fighting with each other for pages and pages long, people committing suicide etc there is no strategy or leadership at all.

The organization is horrible, the mods don't do anything there at all, it's just a free for all. The worst part is these crazy theories that they come up with when they have no knowledge of actual biochemistry. They are literally straight up making shit up. They have been focusing on increasing 5AR for what like 10 years now with nothing to show for it lol...

They hate on anyone that isn't on their forum or that doesn't believe in the PFS foundation. They hate on everyone but yet can't argue or challenge anyone in a debate because they don't argue with science just name calling.

The smart ones are the people who make it out of there and realize how bad that place is. That is the reason all these other forums were born (here for example), people who are serious and dedicated don't want to be around that kind of mentality. I don't feel bad for them at all anymore, they have the option to get out of that place at any time like many of us did.

 

[bruschi11]

That place is a toxic depressed hell hole. People fighting with each other for pages and pages long, people committing suicide etc there is no strategy or leadership at all.

The organization is horrible, the mods don't do anything there at all, it's just a free for all. The worst part is these crazy theories that they come up with when they have no knowledge of actual biochemistry. They are literally straight up making **** up. They have been focusing on increasing 5AR for what like 10 years now with nothing to show for it lol...

They hate on anyone that isn't on their forum or that doesn't believe in the PFS foundation. They hate on everyone but yet can't argue or challenge anyone in a debate because they don't argue with science just name calling.

The smart ones are the people who make it out of there and realize how bad that place is. That is the reason all these other forums were born (here for example), people who are serious and dedicated don't want to be around that kind of mentality. I don't feel bad for them at all anymore, they have the option to get out of that place at any time like many of us did.

It really sucks. I'm only going to post my blog from here on out. Few guys I got to know over there that are following so I just need to leave traces of what we are doing here out there. It's funny- the theory over there is that I don't have PFS, I was just sick all along.

Well- I may have not been in the best of health for years before pfs, what happened to me after taking finasteride made a human being living a solid life between 50 and 70% depending on the time over the previous 3-4 years to living life in an absolute unlivable hole at -100000% for 7 full months. People just don't get it. It's sad- making excuses why I can get better and they can't. "It's all gene regulation and DNA and this and that and 5ar enzymes, and 5ar inhibiting is dangerous, licorice is dangerous, exercise is bad, and 'you used a birth control pill', and "you spray coffee up your ass."

The list goes on and on. All I know is if you go between these two forums you can easily tell this forum is "winning!" Love this place haha.

 

[TubZy]

It really sucks. I'm only going to post my blog from here on out. Few guys I got to know over there that are following so I just need to leave traces of what we are doing here out there. It's funny- the theory over there is that I don't have PFS, I was just sick all along.

Well- I may have not been in the best of health for years before pfs, what happened to me after taking finasteride made a human being living a solid life between 50 and 70% depending on the time over the previous 3-4 years to living life in an absolute unlivable hole at -100000% for 7 full months. People just don't get it. It's sad- making excuses why I can get better and they can't. "It's all gene regulation and DNA and this and that and 5ar enzymes, and 5ar inhibiting is dangerous, licorice is dangerous, exercise is bad, and 'you used a birth control pill', and "you spray coffee up your ass."

The list goes on and on. All I know is if you go between these two forums you can easily tell this forum is "winning!" Love this place haha.

Yeah didn't mean to direct that at you personally just was speaking in general. The funny thing is that they spend more time in trying to prove someone is a "fraud" than actually trying to fix PFS.

The increase 5AR route is done with I spent so much time and money with that route and tried so much crap. Majority of people have normal DHT levels, even me, if 5AR wasn't working my DHT levels would be low. DHT being insensitive makes absolute more sense which is what @gbolduev said. And this stupid theory they keep talking about finasteride causing "epigenetic" changes, seriously? If that was the case no one would every have recovered. On top of that, they now want to combine all PFS type forums and are trying to raise 20 grand for a study, that guess what probably will just tell us what we already know, finasteride causes ED, brain fog etc. with no real solution just like all of the other studies that were done (it's great for lawsuits though LOL)

Exactly...they literally don't understand actual biochemistry and how thing works in the body. They just say "that herb inhibits 5AR, that means it's bad" without understanding the millions of other functions it does in the body.

The only reason I'm putting light to it is because I have seen multiple guys from here go there trying to help some of them get better and they get attacked from them immediately for no reason.

 

[bruschi11]

So true @TubZy . "The epigenetic change" -this is what bothers me with them. Poor dudes (like an 18yo kid who pm'd me on solvepfs the other day) go on that site and get the idea that they had an epigenetic change in their body and their lives are over. It's horrible. It's been proven time and time again that people who have had a reaction to this pharmaceutical can get better from this.

There are a select few there now who just make that place miserable. They just don't get it. It's sad.

##

@Rid dude get on the story you jerk! lol kidding, but when you write I'm very interested to hear how you used licorice root during your trek back including specifics like time of day, amounts, days per week etc. I'd like to throw an herb into what I'm doing here and see how it goes.