Dealing with Chronic Fatigue Syndrome (CFS)

Karen Gomez5 said:Looking at everything everyone has posted here, it seems like we all have a massive range of issues, though our one common denominator is this soul-crushing fatigue... So, I wanted to ask, how far does this actually go?
I woke up at 11:30 AM today, and by 1:00 PM, I was already dead on my feet. That's basically my life now...
I'm not entirely sure what you mean by CFS? Could someone clarify a bit...
I've run about 1,000 different tests at this point instead of listing every single thing, and they tell me I basically "powered through" mono, or that I have chronic mono. It's been nine months since I've been able to leave the house, and I'm totally wiped out every single day... This kind of existence is a nightmare. I used to be an athlete; I was training twice a day...

I was also told I probably just "walked off" an EBV infection, and my diagnosis is currently "under observation"—specifically, Fatigue syndrome in obs (though I'm not entirely sure who is doing the observing besides me). After nearly a year of this, I'm still not sure what we're actually dealing with. The fatigue is intense, but it really only hits those peak levels during flares alongside the other symptoms I mentioned earlier. When I don't have a flare—which happens for three or four days at a time—I can function relatively normally, and honestly, I'm not nearly as exhausted as you all are. From everything I've researched (since the doctors were satisfied enough with a pile of tests to just give me their verdict and send me home to deal with it myself), it might actually be a post-viral syndrome that hasn't quite turned into classic CFS/ME with that constant, soul-crushing fatigue.
Regarding the EBV, since they told you it's chronic mono, did they find that you still have an active EBV infection, or do your labs just show that you had it in the past?

wearyorca15 said:I was also told I probably just "walked off" an EBV infection, and my diagnosis is currently "under observation"—specifically, Fatigue syndrome in obs (though I'm not entirely sure who is doing the observing besides me). After nearly a year of this, I'm still not sure what we're actually dealing with. The fatigue is intense, but it really only hits those peak levels during flares alongside the other symptoms I mentioned earlier. When I don't have a flare—which happens for three or four days at a time—I can function relatively normally, and honestly, I'm not nearly as exhausted as you all are. From everything I've researched (since the doctors were satisfied enough with a pile of tests to just give me their verdict and send me home to deal with it myself), it might actually be a post-viral syndrome that hasn't quite turned into classic CFS/ME with that constant, soul-crushing fatigue.
Regarding the EBV, since they told you it's chronic mono, did they find that you still have an active EBV infection, or do your labs just show that you had it in the past?

Just lab work showing a past infection... I even had a PCR done which, seven months later, showed the virus right at the lower limit of detection... basically, it wasn't above the threshold, but yeah, I had the PCR seven months after the mono hit. Everyone keeps telling me I should have done it sooner, but I was just hoping my enzyme levels would drop off quickly. Sadly, even eight months in, they were still elevated... so that's what's weighing on me. I really don't want to go through with a biopsy, especially since my ALT is mostly high while my AST and GGT are nearly back to normal... just a tiny bit over... nothing alarming, really.

So I’ve got a question—I hit this massive flare back in May 2012 and I haven't stopped feeling exhausted since. It’s constant. I wake up wiped out, and if I walk even like a mile, that’s basically my limit for the entire day. Just today, I went for a quick stroll in the sun for maybe half a mile and I felt absolutely trashed—totally pale, couldn't even stay on my feet, and ended up puking.
Also, I have zero appetite, especially in the mornings. I can manage a little something in the afternoon, but I just cannot put on any weight, no matter what.
The thing is, every single test comes back perfect. I’ve done the blood work, checked my thyroid via biopsy, glucose, blood pressure—everything looks totally normal.
My endocrinologist says it isn't my thyroid, and my primary care doctor is basically clueless about what's going on; she even suggested it might not be chronic fatigue.
So, are you guys dealing with these same exact symptoms?

To give some context, about four months ago I could actually walk 1.2 miles for a decent stretch before hitting a wall, and I had a decent appetite back then—I wasn't waking up feeling this dead. Nowadays, I wake up feeling more or less okay, but once I move, I'm finished. Back then my TSH was 3.6, but a month ago it was down to 2.4...

Has anyone here actually tried adjusting their diet?

http://www.chronic-fatigue-community...igue-diet.html

http://www.cortjohnson.org/blog/2013...yndrome-mecfs/

http://chronicfatigue.about.com/od/c..._fibrodiet.htm

We started looking into this because of autism issues—since Fibromyalgia can mimic some of those symptoms, we were researching things for home use.

Regarding diet, I guess we had a pretty good experience with yoga, though that was specifically working with an experienced instructor who targeted certain breathing and stretching exercises tailored to our symptoms.

Has any specialist you've seen here in the States actually recommended keeping a food diary? You know, tracking everything you eat alongside how you feel afterward. I've heard certain foods can leave a trace for maybe 3 to 5 days.

I’m whining about the same thing as always—basically comparing summer 2011 (back when I was 172 lbs and feeling absolutely killer even though my TSH was high) to summer 2012 (down to 141 lbs and having zero energy for anything, zero drive, just straight up feeling terrible despite my TSH being totally normal).
I mention the TSH because everything kicked off with my thyroid issues.
So, the way people talk about it makes zero sense to me—at least in my experience—🤷because I was eating the exact same foods during both of those summers.

Carl Castillo69 said:I’m whining about the same thing as always—basically comparing summer 2011 (back when I was 172 lbs and feeling absolutely killer even though my TSH was high) to summer 2012 (down to 141 lbs and having zero energy for anything, zero drive, just straight up feeling terrible despite my TSH being totally normal).
I mention the TSH because everything kicked off with my thyroid issues.
So, the way people talk about it makes zero sense to me—at least in my experience—🤷because I was eating the exact same foods during both of those summers.

So what about this idea that Americans eat poorly and their bodies just suddenly gave out from all the junk food?

For us, it was a realization process. It didn't click immediately that neither cereals nor sandwiches are actually good for breakfast, or that cow's milk and anything dairy-based isn't inherently healthy.

It’s interesting—my little one only asks for raw cucumbers for breakfast now. I find myself craving tons of raw onions and green salad, and instinctively reaching for raw fruit and vegetables. (They were taught to eat broccoli and cauliflower cooked since I didn't know we had an issue back then, so I just cooked everything out of habit, and now I have no idea how to switch them over to raw).

Which of you uses almonds or walnuts, and how do you feel after eating those?

Anyone here using almonds or walnuts? How does it actually make you feel after eating them?

I stuck to eating almonds every single day for a month straight—didn't feel any different. Tried pairing them with milk too, still nothing. Whether I eat them or skip them for a month, the only thing that changes is how often I’m hitting the restroom, but it doesn't mess with my stomach or anything else. Same goes for fruit like bananas or apples; didn't make a lick of difference.
Honestly, I eat pretty much everything—all kinds of veggies, basically anything that falls under that "healthy diet" umbrella...

Carl Castillo69 said:So I’ve got a question—I hit this massive flare back in May 2012 and I haven't stopped feeling exhausted since. It’s constant. I wake up wiped out, and if I walk even like a mile, that’s basically my limit for the entire day. Just today, I went for a quick stroll in the sun for maybe half a mile and I felt absolutely trashed—totally pale, couldn't even stay on my feet, and ended up puking.
Also, I have zero appetite, especially in the mornings. I can manage a little something in the afternoon, but I just cannot put on any weight, no matter what.
The thing is, every single test comes back perfect. I’ve done the blood work, checked my thyroid via biopsy, glucose, blood pressure—everything looks totally normal.
My endocrinologist says it isn't my thyroid, and my primary care doctor is basically clueless about what's going on; she even suggested it might not be chronic fatigue.
So, are you guys dealing with these same exact symptoms?

To give some context, about four months ago I could actually walk 1.2 miles for a decent stretch before hitting a wall, and I had a decent appetite back then—I wasn't waking up feeling this dead. Nowadays, I wake up feeling more or less okay, but once I move, I'm finished. Back then my TSH was 3.6, but a month ago it was down to 2.4...

The hallmark of Myalgic encephalomyelitis is that delayed exhaustion after physical effort. Basically, you should see all your symptoms drastically worsen roughly 24 hours—though it can be more or less—after walking that mile.

You’d also likely see other symptoms: joint, muscle, or headache pain, feeling like you have the flu without the actual fever, brain fog, concentration issues, memory problems, sleep disturbances, sensitivity to sound, smells, or light, plus digestive or bladder issues, etc. etc.

As you can see, Myalgic encephalomyelitis is much more than just being tired. If it isn't Myalgic encephalomyelitis, please keep searching rather than settling for a "chronic fatigue" diagnosis, because that label doesn't really tell you anything...

I’ve tried everything when it comes to diet. I’ve always eaten healthy and maintained a steady weight, but ever since getting sick, I’ve gone through the ringer—testing for celiac disease, various food intolerances, and cycling through endless diets. It was just a massive waste of money...

A good diet helps manage almost any condition, but expecting it to make a massive dent in Myalgic encephalomyelitis is like expecting a change in diet to cure cancer or AIDS.

@silentbear16

thanks. i get it better now.

In short... if you didn't shake this crap off in the first couple of years, you probably aren't going to. The fallout ranges from "annoying" to "completely life-altering." And let's be real—maybe 5% of people actually see a full recovery. Let's not sugarcoat it... this thing is brutal 😉

Nicole Taylor5 said:In short... if you didn't shake this crap off in the first couple of years, you probably aren't going to. The fallout ranges from "annoying" to "completely life-altering." And let's be real—maybe 5% of people actually see a full recovery. Let's not sugarcoat it... this thing is brutal 😉

Finally, someone actually said it like it is. 👍

Latest research findings from the conference at Stanford, USA:

Stanford Presents – Advances in Clinical Care and Translational Research

Stanford Symposium for Chronic Fatigue syndrome / Myalgic encephalomyelitis

(In English. I can try to translate if anyone needs me to...)

I'm bringing this topic back up for a moment...

Between the mountain of symptoms I'm dealing with and the endless cycle of researching them—trying to narrow things down by tweaking my diet and eliminating triggers—I stumbled upon Myalgic encephalomyelitis today. This thread feels like it might be relevant, too. I don't have an official diagnosis yet, but I check almost every box on the list.

Since my deep dive started down a completely different rabbit hole, I figured I’d turn to you all and ask: have any of you found a link between your own health struggles and MTHFR issues?

Brenda Stewart59 said:I'm bringing this topic back up for a moment...

Between the mountain of symptoms I'm dealing with and the endless cycle of researching them—trying to narrow things down by tweaking my diet and eliminating triggers—I stumbled upon Myalgic encephalomyelitis today. This thread feels like it might be relevant, too. I don't have an official diagnosis yet, but I check almost every box on the list.

Since my deep dive started down a completely different rabbit hole, I figured I’d turn to you all and ask: have any of you found a link between your own health struggles and MTHFR issues?

I skimmed an article (can't handle long texts in this state). I have been diagnosed with ME. Regarding those supplements like acetyl-l-carnitine or NAD, I've tried them all... nothing helped. I haven't done genetic testing, and I'm not even sure if that's easy to get here in the States.

silentbear16 said:I skimmed an article (can't handle long texts in this state). I have been diagnosed with ME. Regarding those supplements like acetyl-l-carnitine or NAD, I've tried them all... nothing helped. I haven't done genetic testing, and I'm not even sure if that's easy to get here in the States.

In the US, they offer bits and pieces of these genetic screenings, but the most depressing part is the lack of professionals willing to actually connect the dots into one cohesive picture.
Everyone stays strictly within their own silo, refusing to look outside their specific specialization, even though these issues overlap quite extensively.

Here in America, you have specialized genetic labs that focus solely on genomics. You can order a saliva test kit online, spit in a tube, mail it off, and get your results via email.
Once you have those results, you can run them through various sites or apps to get insights and potential diagnostic directions for different conditions.

There are even services that ship kits directly to you in the US, and you just send them back via FedEx or a similar courier service.
https://www.23andme.com/
these ones process the data https://livewello.com/

Brenda Stewart59 said:In the US, they offer bits and pieces of these genetic screenings, but the most depressing part is the lack of professionals willing to actually connect the dots into one cohesive picture.
Everyone stays strictly within their own silo, refusing to look outside their specific specialization, even though these issues overlap quite extensively.

Here in America, you have specialized genetic labs that focus solely on genomics. You can order a saliva test kit online, spit in a tube, mail it off, and get your results via email.
Once you have those results, you can run them through various sites or apps to get insights and potential diagnostic directions for different conditions.

There are even services that ship kits directly to you in the US, and you just send them back via FedEx or a similar courier service.
https://www.23andme.com/
these ones process the data https://livewello.com/

I plan on doing this eventually, but not right now. Everything I've read from other people living with ME so far is still too vague—nobody seems sure about anything, blah blah blah. Plus, the tests are pretty pricey.

I think they still haven't figured out how to properly interpret the data or what the next steps should be once they actually do...

Honestly, this might be the absolute best way to spend money if you actually want to make a lasting difference

http://www.microbediscovery.org/

Hey everyone, I was wondering if anyone here has actually been given this specific diagnosis? I’m really curious to hear what kind of symptoms you guys deal with and what your treatment plan looks like. To be clear, I’m not just talking about feeling that heavy, soul-crushing chronic fatigue—I mean the actual, official final diagnosis.