Anyone out there suffer from chronic fatigue syndrome?

I was never officially 'diagnosed' with CFS but am almost sure I have had it.  I tested with extremely high titers of Epstein-Barr in Apr 2016 and being diagnosed falsely with 'mono' when it was really 41 + years of living like feeling like sh*t day in and day out. 

I decided to turn over a new leaf for July and woke up today feeling great.  I've spent tens of thousands on a product line from a company called DR Vitamin Solutions that helped me supplement in a somewhat unconventional way.  Interesting because my labs pointed at a slight lymphocyte (immune cell) deficiency since I was 22 years old, but no doctor seemed to care one iota.  I had been fighting a chronic infection all these years and had been dismissed time and time again.

It's been a long journey and I still continue to have my good days and 'bad' days.  Three months after losing my job I've spent a LOT of the time sleeping, and this has affected my income potential greatly - didn't even make $2K this past month =( .... ugh.  But, I guess your body is telling you something when it says 'I need rest', right? hey at least I have a source of income I can turn on and off at will, and not get 'fired' from it. That is a great thing and my body needed it.

Curious if others of you suffer from this or just a general sense of malaise.
Thanks for sharing!

mattsmom said:

Curious if others of you suffer from this or just a general sense of malaise.
Thanks for sharing!

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Definitely. I have an aquantance who does have a diagnosis of this and is fighting with her employer right now. But when she goes into detail about it I feel like err, well I have that.   

I have always had a low muscle ability. I can workout for months and never gain any muscle and basically be in pain the entire time. I simply cannot go out after work because work is 100% where all my energy is expended. I have nothing left. I take time off on a Tuesday or a Wednesday -- HONESTLY - just to restore my energy. In fact I get extremely angry when my bosses seem to object. Because they somehow think it is choice. It isn't a choice.   But I would never tell them the real reason because they like "high energy" people. 

I have low blood pressure (not dangerously low) and low heart rate. Sleeping is about 50 ppm. I have begged my doctor to find out why I have these things and to help me but she thinks it is the best ever and won't look.  I ordered thyroid tests on my own and the results were not conclusive enough for me to take action.  I also have a low metabolism. I had it tested and my RMR is only 1200. Basically that was at the lowest point on their scale. 

I suspect it could be due to two things (1) genetics, my mother was this way. Lucky her she was a stay at home mom; and (2) constant dieting which I have been doing since I was a kid. (my mom did too).  It just has suppressed my entire endocrine system.  Nothing I have ever taken has made much of a difference.

EmilyFoxSeaton said:

mattsmom said:

Curious if others of you suffer from this or just a general sense of malaise.
Thanks for sharing!

Click to expand...

Definitely. I have an aquantance who does have a diagnosis of this and is fighting with her employer right now. But when she goes into detail about it I feel like err, well I have that.   

I have always had a low muscle ability. I can workout for months and never gain any muscle and basically be in pain the entire time. I simply cannot go out after work because work is 100% where all my energy is expended. I have nothing left. I take time off on a Tuesday or a Wednesday -- HONESTLY - just to restore my energy. In fact I get extremely angry when my bosses seem to object. Because they somehow think it is choice. It isn't a choice.   But I would never tell them the real reason because they like "high energy" people. 

I have low blood pressure (not dangerously low) and low heart rate. Sleeping is about 50 ppm. I have begged my doctor to find out why I have these things and to help me but she thinks it is the best ever and won't look.  I ordered thyroid tests on my own and the results were not conclusive enough for me to take action.  I also have a low metabolism. I had it tested and my RMR is only 1200. Basically that was at the lowest point on their scale. 

I suspect it could be due to two things (1) genetics, my mother was this way. Lucky her she was a stay at home mom; and (2) constant dieting which I have been doing since I was a kid. (my mom did too).  It just has suppressed my entire endocrine system.  Nothing I have ever taken has made much of a difference.

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I have a gene for hemochromatosis, I'm heterozygous.  However the fact that I had an exposure to high iron levels for a different reason, made me manifest the full blown nature of this disease.  I have to have regular phlebotomies and/or eat a low-iron diet to control. 

Iron spurs chronic infections, so that is why I believe I had so many immune issues.  With the mentioned supplements, the phlebotomies (which are now free at the Red Cross), and other measures (I eliminated gluten from my diet for about 4 months), I have slowly but steadily improved.  I found certain forms of B vitamins (methylcobalamin instead of cyanocobalamin, and folinic acid rather than standard folate) to be particularly helpful.

Oh - and I use a CPAP machine. Made me think of that when you mentioned resting heart rate.

So glad I had all this paid for by Dec of 2016, my insurance picked up over $70,000 of my care. I am currently uninsured but still using the CPAP machine, it's paid for free and clear... and also enrolled in a study where I get labwork done and actually paid to do it - (including heart rate and sleep heart rate analysis) so I will have a more general idea how I'm doing. I worked in healthcare in my previous career so I'm glad to be savvy in that arena.

Waiting for the saliva test from 23andMe to reveal anything further. I've read about the MTHFR mutation being particularly of concern with regard to the TYPE of B vits you supplement with. I have a ton of conditions (schizophrenia on my mom's side, who knows on my dad's...) that I'm waiting to find out my own genetic / epigenetic standing on and how I can modify my lifestyle to avoid. I don't believe in fatalism when it concerns genetics. Epigenetic changes such as improving your DNA's methylation / acetylation ratio are forefront in my own mind.

mattsmom said:

Waiting for the saliva test from 23andMe to reveal anything further.

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HA me too. Sent in the kit about 3 weeks ago. 

I had extra iron at one point due to taking too much iron in a multi supplement with added iron. So I do have to watch it from time to time. But I haven't had the issue in a while. 

I am testing my hormones tomorrow via a salvia kit. I would use the blood tests but I understand blood tests aren't reliable if you don't know where you are in your cycle and now i have zero clue. 

Oh - and I use a CPAP machine. Made me think of that when you mentioned resting heart rate.

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My doctor tried that on me. She insisted that my "fatigue" was due to sleep apnea. So I finally did an at home test. I got the results and she said I had sleep apnea and gave me the info to do the Cpap. I didn't believe her and I got my actual results. I was diagnosed with mild sleep apnea based on the fact that there is a scale that starts at about 74 or so. I scored 79. But within the actual results it said that they could not be sure that my "apnea" episodes were not me getting up and going to the bathroom as that causes the machine to interpret as a substantial apena. It clearly said that for purposes of the top result they scored it as an apnea but sleep apnea should not be diagnosed as there were not enough incidents during the night to make it clear that I had sleep apnea. 

I brought that to my doctors attention and she was displeased. She isn't likely to do much to get to the bottom of anything now that I made her look foolish. 

Also I saw a few less intrusive cpap replacements coming on the market soon. One just is like a cap that you put on your nose. Much less involved.

I was diagnosed with 'autoimmune hepatitis' this time last year, started on steroids (prednisone / budesonide), and watched my blood sugar go to extremes like 50's - 60's in the morning and 300 at its highest. I also was started on progesterone at that time, which is a steroid too, albeit a sex steroid - but because I knew that progesterone gets converted by the adrenals to cortisol, was able to wean off the artificial steroids. Been off them for 6+ months and no more blood sugar swings. Liver tests have been normal. A lot of research has been done into the tie in between sleep apnea, liver failure and iron excess. (i.e. iron in the wrong places).

The trick I've found is to 'steal' it away from bacteria enough that you get it back into your own system where it can be helpful.
One can do this using iron chelators like alpha-lipoic acid, curcurmin, green tea extract (or in my case, I just LOVE eating green tea ice cream!) and do it in a 'smart' way to rip it from the bacterial siderophores so the bacteria end up perishing. That, along with some pulsed antibiotics to kick the bad bacteria in the proverbial balls, and you've got 'em.

Autoimmune disorders also have been shown to manifest initially as infections too. Type I diabetes has been tied to cytomegalovirus for example....It's the battle where the body says hey my immune system isn't working to eliminate it so I'm gonna have to destroy the organs now....sad.

LOL on the sleep apnea, me having been a chronic insomnia sufferer for years - I was really, REALLY hoping that I would be able to tolerate it. I did! I got the full facemask too, so I was surprised. As I'm now 7+ months into treatment I've noticed my AHI scores fluctuate. When I was going through this 'I need to sleep all the time' phase I was like in the 2.0-3.0 range. Now, I seem to be out of my next plank of healing and back below 1.0 - my AHI from last night was 0.5.

The gene I have, H63D, specifically favors iron deposition in your brain: http://www.irondisorders.org/Websites/idi/files/Content/854268/ST H63D APR 2010.pdf Now as the article mentions it can also increase your chances of some degenerative diseases like Alzheimers, Lou Gehrigs' etc. Mainly if you are homozygous but like I said I had some additional factors that played into my personal iron excess. Iron is crucial when you are younger but when you get older in your 40's, 50's 60's that's when your thymus weakens and bacteria are able to access the brain's iron through siderophoric activitiy (little magnets) to flock up there in the glial lymphatic tissue. I can actually feel mine as I'm very sensitive LOL ....