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    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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Hey Guys

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hey Guys,

Just wanted to say hello (have posted in the right forum) and let people know my background as it may help them!

I used to be very active (natural bodybuilding/powerlifting) and a gym supervisor by trade, yet CFS hit over a year ago and have not been able to work out properly since. I also studied nutrition at university before I got ill so I am hugely into the diet/supps side of things.

I am working with the OHC and am on the mitochondria package...but to be honest can say it hasnt really done much atm. I had a mito test done and it was textbook results-low atp/recycling, low carnitine (i never ate read meat just white....) and low glutathione.

I have OCD and have suffered from depression in the past and at the time I got ill was under a lot of stress from various angles!

Things that have worked for me are:

-Getting enough sleep-usually 9 hours at least and also going to be at the same time every night (9.30pm....party animal I know).

-Meditation to calm my racing mind.

-Green juicing and probiotics. Actually made me sleep better it would seem.....possibly the magnesium, I am not sure.


Anyway will keep you posted. Hope I can help maybe and I wlecome ANY advice!

Ben
 

Plum

Senior Member
Messages
512
Location
UK
Hi and welcome.

I am curious - do you manage any exercise at the moment? I know a lot of gym enthusiasts get CFS - have you checked your adrenal glands? Nice to see someone into the diet side of things.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hey Plum,

Unfortunately no. I could exercise but I feel horrific and that is a sign...plus my fatigue stops me enjoying it too.

I did have an adrenal test and it was *slightly* abnormal. High morning and noon cortisol. Afternoon and bed time was fine.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
Hey Guys,

Just wanted to say hello (have posted in the right forum) and let people know my background as it may help them!

I used to be very active (natural bodybuilding/powerlifting) and a gym supervisor by trade, yet CFS hit over a year ago and have not been able to work out properly since. I also studied nutrition at university before I got ill so I am hugely into the diet/supps side of things.

I am working with the OHC and am on the mitochondria package...but to be honest can say it hasnt really done much atm. I had a mito test done and it was textbook results-low atp/recycling, low carnitine (i never ate read meat just white....) and low glutathione.

I have OCD and have suffered from depression in the past and at the time I got ill was under a lot of stress from various angles!

Things that have worked for me are:

-Getting enough sleep-usually 9 hours at least and also going to be at the same time every night (9.30pm....party animal I know).

-Meditation to calm my racing mind.

-Green juicing and probiotics. Actually made me sleep better it would seem.....possibly the magnesium, I am not sure.


Anyway will keep you posted. Hope I can help maybe and I wlecome ANY advice!

Ben


Welcome Ben

Did you have a viral onset? Where you training heavily at the time? Just curious.

I have often wondered if any bodybuilders had ever developed me/cfs. I had never heard of any until now
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hey B,

In a way, yes.

At the time when I developed CFS, I was training 6 days a week, dieting/caloric deficit, doing 30hrs a week work, doing University part time and travelling 3 hours a day 3-4 days a week. Coupled with 5 hours average sleep for about 6 months (and I REALLY need my sleep) things just went BANG.

I actually went to hospital with horrific stomach pains but nothing was found. Thats the only time I have been to A+E apart from breakages etc. I dont even take headache tablets!

I know that athletes are high risk of CFS compared to other groups. Now Natural Bodybuilding isnt as demanding as Olympic level sport...but it is still extremely demanding. That, a classic type A personality and the above =CFS for me!

Ben
 

beaverfury

beaverfury
Messages
503
Location
West Australia
Hey B,

In a way, yes.

At the time when I developed CFS, I was training 6 days a week, dieting/caloric deficit, doing 30hrs a week work, doing University part time and travelling 3 hours a day 3-4 days a week. Coupled with 5 hours average sleep for about 6 months (and I REALLY need my sleep) things just went BANG.

I actually went to hospital with horrific stomach pains but nothing was found. Thats the only time I have been to A+E apart from breakages etc. I dont even take headache tablets!

I know that athletes are high risk of CFS compared to other groups. Now Natural Bodybuilding isnt as demanding as Olympic level sport...but it is still extremely demanding. That, a classic type A personality and the above =CFS for me!

Ben

Bugger.

You were really pushing yourself.

But you have a good chance of getting much better, or dare i say, recovering. You are young and probably still quite fit.

I think Creatine and Carnitine fumarate have been my best mito supps for energy. Magnesium very good for pain.
I have taken these with Citicoline and had periods where i have been able to exercise again with minimal payback.
(But Citicoline brings on bad depression so had to put it aside for time being).

Good luck!
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Very true mate....though at the time I didn't realise. I wish someone had said haha.

Thanks for the kind words. I tell other guys around my age to make sure they get adequate sleep, counterbalance activity with relaxation so that they dont become a 'Ben' ;)

Interesting about creatine. My nutritionist wants to phase that in later but I used to take 5g daily when I was BB. Whats your dose and how do you find it helps you? Carnitine fumarate I have not heard of (in that form)...I just take Acetyl L-Carnitine. But I do like it and its an area I need to address based on my mito results (and the fact I didnt eat red meat). I just wonder how effective it is right now with my digestion issues.

Thanks B.

Ben
 

beaverfury

beaverfury
Messages
503
Location
West Australia
Very true mate....though at the time I didn't realise. I wish someone had said haha.

Thanks for the kind words. I tell other guys around my age to make sure they get adequate sleep, counterbalance activity with relaxation so that they dont become a 'Ben' ;)

Interesting about creatine. My nutritionist wants to phase that in later but I used to take 5g daily when I was BB. Whats your dose and how do you find it helps you? Carnitine fumarate I have not heard of (in that form)...I just take Acetyl L-Carnitine. But I do like it and its an area I need to address based on my mito results (and the fact I didnt eat red meat). I just wonder how effective it is right now with my digestion issues.

Thanks B.

Ben

That's true what you say about digestion issues. I've come to that conclusion backwards after 3 1/2 years of little progress.

A lot of people end up tailoring their diet and taking betaine HCL, glutamine,digestive enzymes, probiotics or a million other myriad supps for gut issues.

I take about 3g daily of creatine.
It says on my Jarrows Creatine bottle that creatine also ' reduces exercise fatigue by absorbing hydrogen ions released by muscles in the form of lactic acid', as well as maintaining higher levels of ATP during exercise. That sounds great.
Citicoline works on muscarinic pain receptors.
The whole sandwhich put me into remission for about two weeks...but i was just too depressed to enjoy it.
Even if it is just covering over the energy and pain symptoms rather than curing them, they are two very large, misery inducing symptoms given some relief.

But mito supps dont always do it for everybody. I dont notice much with ribose, and not much with CoQ10 lately.

Minus citicoline, i still get a modest boost in energy on creatine and carnitine fumurate.

I dont know much about carnitine fumurate other than taking it coincided with the above success, and it is what Fredd recommends with his methylation protocol.

Who is Fredd, you ask ? Maybe you've already read his fine methylation threads on this forum. If not, they're worth checking out. He has a very affirmative way of writing.

I also tell friends not to push themselves too much. They think i'm a nutball.

The sad fact is some people are bulletproof! ..And i'm not one of them
 

Plum

Senior Member
Messages
512
Location
UK
With gut issues bone broth is very helpful. The GAPS diet uses this greatly to heal the gut. Glutamine works well for me as does aloe vera. If you have any inflammation of the gut betaine hydrocholride makes it worse so tread carefully - I now have a raw oesophagus!
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
With gut issues bone broth is very helpful. The GAPS diet uses this greatly to heal the gut. Glutamine works well for me as does aloe vera. If you have any inflammation of the gut betaine hydrocholride makes it worse so tread carefully - I now have a raw oesophagus!

Hey Plum.

Why is bone broth useful? I have heard this a lot...

Im taking glutamirne now and like it....though its not massively noticeable.

I think I have low hcl but that will be confirmed on tuesday. Betaine hcl is obviously meant to help with that so im confused as to why that would have affected you....unless your hcl levels were high to begin with? Sorry to hear that :/
 

Plum

Senior Member
Messages
512
Location
UK
Hey Plum.

Why is bone broth useful? I have heard this a lot...

Im taking glutamirne now and like it....though its not massively noticeable.

I think I have low hcl but that will be confirmed on tuesday. Betaine hcl is obviously meant to help with that so im confused as to why that would have affected you....unless your hcl levels were high to begin with? Sorry to hear that :/
Bone broth contains amino acids and minerals. This is meant to give your body the building blocks it needs to repair your gut. It also makes things like grains more digestible. If you are interested in the grains thing look at a book called 'Nourishing Traditions' it comes from Weston Price Foundation.
If you want to learn more about bone broth:
http://www.gaps.me/preview/?page_id=28
scroll down to where it says 'First Stage'

I had low HCl for years and had good results with supplements. Then I got really ill and along with that came food allergies and leaky gut. I think supplementing at this time just made things worse. Lots of aloe vera and glutamine went some way to fixing things as did getting rid of gluten and all grains. But I still have problems.

I have found a cup of bone broth with a meal feels nice!

Ben, I think you'd like a guy on youtube called Sean Croxton. He's super cool and gives good general health advice. I think you'd like his personality and his knowledge. Here's a clip of his on making bone broth:
He's into fitness and all aspects of health. And yes, he's one of those lucky people who doesn't have ME. But I learnt a lot from him.
 

heapsreal

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10,089
Location
australia (brisbane)
I was right into oly lifting and some power lifting before cfs hit, it took me a couple of years to understand i was doing the wrong thing trying to train hard etc. I still use to cycle my training intensity etc but it was just still too much. I found i had to do ultra abbreviated training but only when i was feeling ok. So my work outs would consist of 1 exercise either a squat or a power clean, one of the big ones. I would keep my reps very low 1-3 reps and this was so i could avoid my cardio work too hard as i think this played a big part in post exertional malaise. SO i would rest alot between sets to make sure i wasnt out of breath. Training like this did help me maintain my strength and size for a long time and showed i didnt need the training volume i use to use. Eventually i got to the point where i was too sick and just didnt train at all, so lost alot of strength, size etc. I found it really hard to exercise consistently. I found if i needed to rest then i would not exercise for several months. Muscle memory is a real thing and when i do feel well enough to train consistently for a few weeks it doesnt take long to get back what gains i had lost. Most of the time now when im in an exercise groove i just do overhead squats as they help with core strength, flexibilty etc and i think give the most bang for the buck, also i can just knock out a few sets of 5 reps and work out is done while trying to avoid PEM.

I think the typical bodybuilders do overtrain alot and restricted diets as in trying to cut up, can greatly add to adrenal fatigue/dysfunction. My personal opinion of even healthy people weight training is that they dont need to train more then 3 times a week to make good gains, generally more training just interferes with recovery.

If your a gym junkie like i was, its dam hard to maintain some type of normal exercise schedule. It was my main hobby and my time to get away from the real world i guess for some peace. I really use to enjoy pushing myself physically but now it seems those days are gone :cry: but i havent given up so still a work in progress.

good luck dude.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
I was right into oly lifting and some power lifting before cfs hit, it took me a couple of years to understand i was doing the wrong thing trying to train hard etc. I still use to cycle my training intensity etc but it was just still too much. I found i had to do ultra abbreviated training but only when i was feeling ok. So my work outs would consist of 1 exercise either a squat or a power clean, one of the big ones. I would keep my reps very low 1-3 reps and this was so i could avoid my cardio work too hard as i think this played a big part in post exertional malaise. SO i would rest alot between sets to make sure i wasnt out of breath. Training like this did help me maintain my strength and size for a long time and showed i didnt need the training volume i use to use. Eventually i got to the point where i was too sick and just didnt train at all, so lost alot of strength, size etc. I found it really hard to exercise consistently. I found if i needed to rest then i would not exercise for several months. Muscle memory is a real thing and when i do feel well enough to train consistently for a few weeks it doesnt take long to get back what gains i had lost. Most of the time now when im in an exercise groove i just do overhead squats as they help with core strength, flexibilty etc and i think give the most bang for the buck, also i can just knock out a few sets of 5 reps and work out is done while trying to avoid PEM.

I think the typical bodybuilders do overtrain alot and restricted diets as in trying to cut up, can greatly add to adrenal fatigue/dysfunction. My personal opinion of even healthy people weight training is that they dont need to train more then 3 times a week to make good gains, generally more training just interferes with recovery.

If your a gym junkie like i was, its dam hard to maintain some type of normal exercise schedule. It was my main hobby and my time to get away from the real world i guess for some peace. I really use to enjoy pushing myself physically but now it seems those days are gone :cry: but i havent given up so still a work in progress.

good luck dude.
Hey heapsreal...dude you are BANG ON!

I agree with everything you say. People train too hard, too restrictively (diet) for our lifestyle nowadays (stress etc).

I make it my job as a Gym Manger to tell everyone that 3 days is enough as long as you are doing the big 3 lifts/compound movements.

This post made me smile as you know how hard it is to not train! But hey, dont give up, I have heard and know MANY people who have completely recovered from CFS. What tests have you had done?
 

hmnr asg

Senior Member
Messages
558
hi Ben,
Sorry to jump in kinda late on this thread, but when I saw Ben's story it mirrored EXACTLY mine. I was 29 when my CFS hit. I also have OCD and anxiety and at the time i was swimming and strength training (HARD) and doing yoga and biking about 2 hours a day. I know this sounds a little crazy but for me sports were my main source of joy in life and they came before friends or work or ... not only I loved them, they kept the anxieties at bay. And shit, i looked goood! lol

I remember my problems started with GI symptoms as well. Mainly GAS! out of nowhere one night i woke up with horrible bloating and this went on for weeks. My stomach had ballooned and I looked pregnant! I was having a tough time sleeping too because of the massive amounts of gas. After about a month of this crazyness I was in a very tough hot yoga class and I was really forcing myself to keep up with the class and something just snapped. I know exactly that was the beginning of the whole thing. I just never recovered from that I have been devastatingly tired since then. Also I had all kinds of weird GI symptoms and had to have clonoscopy and endocscopy and barium enema done on me. They were all eventually chalked up to IBS in the end by the head of internal medicine at my local hospital.

However, whats crazy about my case of CFS is that after about 7 months i accepted my symptoms and then went right back to the gym and I started hitting the weights real hard again! I was taking alot of whey and my preworkout shake was: creatine+ glutamine+l-acetylcarnitine+D-ribose+carnitine+some other stuff+coffee lol. For 2 years I continued working out like this. But now things were different than before the CFS, I had to rest frequently and even though i got stronger I never grew much in size. The other thing is that I was working out 2 hours a day (still less than I used to) sleeping 10 hours, and feeling like SHIT the rest of the day. The working out was just taking everything out of me. I was a PhD student and I SHAT all over my thesis because I just couldnt work on it anymore.
Recently however I broke my ankle and I have been home for 3 months because I cant move. And I have done more on my thesis than ever before. I think it has become very clear that maybe I need to accept that I cant workout like I used to. I guess gotta find new joys in life, I miss the iron soo much :confused:
ps Ben try NAG for GI and anxiety and maybe inositol for your OCD.

H
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Strange how the story is so similar for so many of us. I was a running/cycling and workout addict for a few years - on a low fat, low salt vegetarian diet. Uh oh! Recipe for disaster. My fitness was off the charts and body fat almost non-existent, but lack of cholesterol and quality animal protein took its toll. I guess glutathione gets depleted, the mitochondria get damaged, and that's it. It took a chemical injury and then a too-fast steroid taper to finally trigger the CFS, not to mention mercury amalgams doing a number for years on the immune system, but I think the stage was set from the years of heavy training.

These "vegetarian" and "vegan" diet fads are so dangerous! If people only knew how out of balance those ideas are, not to mention all the medical "low fat/low salt" BS. Very bad idea to stray too far from traditional/indigenous cultural practices, and almost no culture I know of is naturally vegetarian. It just doesn't really exist.
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
Strange how the story is so similar for so many of us. I was a running/cycling and workout addict for a few years - on a low fat, low salt vegetarian diet. Uh oh! Recipe for disaster. My fitness was off the charts and body fat almost non-existent, but lack of cholesterol and quality animal protein took its toll. I guess glutathione gets depleted, the mitochondria get damaged, and that's it. It took a chemical injury and then a too-fast steroid taper to finally trigger the CFS, not to mention mercury amalgams doing a number for years on the immune system, but I think the stage was set from the years of heavy training.

These "vegetarian" and "vegan" diet fads are so dangerous! If people only knew how out of balance those ideas are, not to mention all the medical "low fat/low salt" BS. Very bad idea to stray too far from traditional/indigenous cultural practices, and almost no culture I know of is naturally vegetarian. It just doesn't really exist.

hi jeffrez

I hear what you're saying here. Quite a few years ago I read this book titled "Electrical Nutrition" and a major premise of the book was that we were born to be meat eating carnivores. They pointed out that people who became strict vegans, initially looked and felt healthier, but the longer they stayed vegan, their health started taking a nose dive. I know I'm never giving up my meat and some fat that comes along with it!

Rand
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Hi Ben! :)

This thread is so interesting. I was not a body builder, but I was in very good shape and was eating smoothies with a good amount of whey daily when my bad flare up hit last year (Bob's Red Mill whey - 1/4 - 1/2 cup per day).

However, I eat a lot of high quality meat (pastured beef, home raised goat, etc.). So definitely there's no link to vegetarianism for me.

I had wondered if whey messed up my methylation cycle enough to set off my massive flare up...

Sleep - yes. 9:30 is the witching hour. :) Totally agree about probiotics and meditation. And I live on betain HCL with my meals.

Have a nice weekend, Ben.
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Most of the guys who have posted in this thread have been heavily into weight training at some time, pre cfs. Has anyone looked deeply into anabolic steroids to treat cfs?
There are some studies with HIV patients which show it stops muscle wasting but it also improved immune function like cd4 and cd8 counts etc. deca durabolin seems to have this property. I wonder if being in a more anabolic state helps recovery from cfs, less physical stress etc Many of us are low in most hormones anyway but i think the dosages used are abit higher then hormone replacement?? here's some interesting links.
http://decadurabolinleanmass.wordpress.com/2012/11/09/deca-durabolin-improves-immune-function/
https://docs.google.com/file/d/0B0g6XRtm2AQRYmZLUG93Q3M2T0U/edit?pli=1#
I find all this quite interesting but i think u would have to find a very forward thinking doc to treat us like that??