Dealing with Chronic Fatigue Syndrome (CFS)

silentbear16 said:Unfortunately, I can't offer much help. I don't deal with the dizziness or the nausea myself. Also, during that first year, I had periods where I felt completely fine, but those windows have disappeared over time. Everything else lines up, including the EBV situation. However, since over 90% of people have had EBV, doctors don't really pay much attention to it, just like you mentioned.

How intense is that fatigue and exhaustion, if you don't mind me asking?

It's true that chronic fatigue is linked to fibromyalgia, but that isn't the only condition where you see this.

Fibromyalgia and Myalgic Encephalomyelitis (ME) are very similar, but with fibromyalgia, the focus is on pain, whereas with ME, the emphasis is on total exhaustion and a severe crash following any physical or mental exertion.

The theory regarding the mouse leukemia retrovirus has been debunked with almost 100% certainty. Those initial findings were simply wrong due to contamination.

As for exercise in ME, that's one of the most controversial topics out there. While one study in the UK showed slight improvement with exercise, many other studies—along with actual patient experiences—show significant worsening and the emergence of new, more severe symptoms. Because of this, anyone who notices their symptoms getting worse should absolutely NOT insist on any physical effort (even something as simple as climbing stairs), as it could lead to permanent damage to the heart and brain.

Right now, I’m running on maybe 40-50% of my old self. Being exhausted doesn't mean I can actually sleep, either. I managed about six hours last night, which is a decent night by my standards. As for exercising, I can't even wrap my head around the idea.

So, I see that you shouldn't expect much from the medical system. I figured that out myself; none of the doctors I've seen seem particularly interested in seeing me for follow-ups. They say what they need to say and leave it at that. 🤷 That’s why I’m curious who gave you the diagnosis with code 93.3, because I never received that specific code. My primary care physician is just confused 😕 and has no clue what to do with me.

I'm also wondering if anyone is taking vitamins, minerals, or other supplements, and which ones you're using.

feralhound17 said:That all makes sense, but what happens to the individual when chronic fatigue meets physical exhaustion—where even a tiny bit of effort wipes out whatever little stamina they have left?
By that logic, she might as well just stay in bed permanently, since even the act of getting up would become an activity that triggers massive physical exhaustion.🤷

Up until recently, I felt absolutely wrecked from fatigue—I mean, just leaning my head over the sink to wash my hair would drain me—plus I had constant aches all over my body. Now, I’m doing three hours of aerobic exercise a day. I don't even think about it, and nothing hurts until the moment I stop, lie down, or lean my arms on a table or a bed.
The very first day I started working out, I almost suffocated from wheezing in my lungs, pain, and this total lack of strength...
But if I was able to handle those kinds of workouts once, I can do them again. No virus, maladaptation, neurotransmitters, or random pains are going to stop me—I'm just going to ignore them.

I also realized how crucial it is to go to sleep without letting your brain spiral—just staying relaxed and calm—otherwise, it's like the brain isn't actually sleeping. If I don't, my symptoms are way worse the next day. I feel even more exhausted, and the area around my elbows and collarbones feels even more painful—almost like a deep depletion, or maybe a deficiency in something (serotonin, maybe?), though that's medically illogical—or perhaps those areas are just sending out pain signals?🤷

It’s true, it’s such a tragedy when you lose your physical conditioning on top of fighting the illness itself. But even for people waking up from a coma—where they were completely immobile—there's still that possibility of returning to a normal life one day...

It doesn’t have to mean being stuck in bed forever. It’s really just about learning where your limits are. For some people, that might mean staying in bed permanently, but for others, it could just be some light exercise...

People living with actual CFS/ME don't need me or their doctors telling them where their limit is... this illness is more than capable of setting its own boundaries.

It’s great that you can pull off three hours of cardio every single day, but honestly... it feels pretty irresponsible to assume everyone else can just push through like that. It isn't just about willpower. You know exactly what kind of medical condition you're dealing with and how severe it is, but others might be facing something completely different or much more intense...

wearyorca15, most of us end up self-diagnosing anyway. I got my own confirmation through bloodwork—my cellular energy flow was sitting at 0.24, while the healthy range is usually between 1 and 3. So if the average is 2, I’m basically running on 1/8th power. On top of that, I’m hitting B12 injections, Vitamin C, D, ribose, multivitamins, niacin, L-carnitine, Q10, Omega-3, and magnesium. I even did the paleo diet for six months. Honestly? Felt zero difference. I think it’s worth being proactive, maybe heading to a clinic to look into antivirals. But like silentbear16 said, it’s all so individual that you really have to make your own calls. Regarding exercise, I’m with silentbear16 on this one—you can't just give blanket advice on how much to work out. I’ve gone from being bedridden to pulling 8-hour shifts. Right now, cardio is a disaster for me, but I can manage a ton of pushups. My biggest hurdle is the nighttime "shaking," which ruins my sleep, and bad sleep is one of the main triggers for CFS crashes. For anyone new here, check out phoenixrising.com or Dr. Myhill’s site if you want to actually learn something... because awareness of CFS here in the States is practically non-existent.

Nicole Taylor5 said:wearyorca15, most of us end up self-diagnosing anyway. I got my own confirmation through bloodwork—my cellular energy flow was sitting at 0.24, while the healthy range is usually between 1 and 3. So if the average is 2, I’m basically running on 1/8th power. On top of that, I’m hitting B12 injections, Vitamin C, D, ribose, multivitamins, niacin, L-carnitine, Q10, Omega-3, and magnesium. I even did the paleo diet for six months. Honestly? Felt zero difference. I think it’s worth being proactive, maybe heading to a clinic to look into antivirals. But like silentbear16 said, it’s all so individual that you really have to make your own calls. Regarding exercise, I’m with silentbear16 on this one—you can't just give blanket advice on how much to work out. I’ve gone from being bedridden to pulling 8-hour shifts. Right now, cardio is a disaster for me, but I can manage a ton of pushups. My biggest hurdle is the nighttime "shaking," which ruins my sleep, and bad sleep is one of the main triggers for CFS crashes. For anyone new here, check out phoenixrising.com or Dr. Myhill’s site if you want to actually learn something... because awareness of CFS here in the States is practically non-existent.

can someone break this down for me? what does this actually mean?

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Tyler James5 said:can someone break this down for me? what does this actually mean?

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I get this weird sensation in my head, kind of like I'm swaying. It’s not full-on vertigo, just feeling totally off-balance. Sometimes in my sleep, I feel these "hits"—like my blood pressure is spiking and dropping at once. Could just be anxiety; after dealing with this stuff for 13 years, the mental toll starts catching up to you.

@Nicole Taylor5 - yeah, this definitely sounds like anxiety issues. have you ever actually sat down and talked things through with a therapist or maybe even a psychiatrist?

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Nicole Taylor5 said:wearyorca15, most of us end up self-diagnosing anyway. I got my own confirmation through bloodwork—my cellular energy flow was sitting at 0.24, while the healthy range is usually between 1 and 3. So if the average is 2, I’m basically running on 1/8th power. On top of that, I’m hitting B12 injections, Vitamin C, D, ribose, multivitamins, niacin, L-carnitine, Q10, Omega-3, and magnesium. I even did the paleo diet for six months. Honestly? Felt zero difference. I think it’s worth being proactive, maybe heading to a clinic to look into antivirals. But like silentbear16 said, it’s all so individual that you really have to make your own calls. Regarding exercise, I’m with silentbear16 on this one—you can't just give blanket advice on how much to work out. I’ve gone from being bedridden to pulling 8-hour shifts. Right now, cardio is a disaster for me, but I can manage a ton of pushups. My biggest hurdle is the nighttime "shaking," which ruins my sleep, and bad sleep is one of the main triggers for CFS crashes. For anyone new here, check out phoenixrising.com or Dr. Myhill’s site if you want to actually learn something... because awareness of CFS here in the States is practically non-existent.

Thanks for the insight. Dizziness is a massive hurdle for me too, though mine doesn't hit at night; instead, it comes in waves alongside other symptoms like GI spasms, chills, tremors, and low-grade fevers. Sleep quality isn't something I can brag about either—it's definitely a core trigger. I've checked those sites and looked over the diet you mentioned, but that approach isn't feasible for me since certain foods act as major flare-ups. I've been diagnosed with gastritis, which seems common enough with CFS. I'm still stuck in that endless cycle of trying to figure out what I can actually eat without crashing.
Since I'm still new to all this, it's hard to stomach the fact that there's zero awareness of CFS/ME in the US and we're essentially left to fend for ourselves. It's no wonder doctors try to push anxiety meds or antidepressants on us. I’d love nothing more than for those to solve the problem, but they don't. And sure, I get anxious sometimes—anyone would be feeling the same way under these circumstances. I can't even begin to imagine how you've managed after 13 years...

One more thing... I came across some info on European sites suggesting that bioresonance might help due to its antiviral effects, almost like an antiviral medication. Has anyone here actually tried it?

Tyler James5 said:@Nicole Taylor5 - yeah, this definitely sounds like anxiety issues. have you ever actually sat down and talked things through with a therapist or maybe even a psychiatrist?

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I've been in therapy for a year now and even tried antidepressants and anti-anxiety meds... didn't do much for me. Still, I'm going to stick with the therapy through to the end because I think it'll eventually pay off. Combining the sessions with steady exercises and vitamins usually helps, too.

wearyorca15 said:Thanks for the insight. Dizziness is a massive hurdle for me too, though mine doesn't hit at night; instead, it comes in waves alongside other symptoms like GI spasms, chills, tremors, and low-grade fevers. Sleep quality isn't something I can brag about either—it's definitely a core trigger. I've checked those sites and looked over the diet you mentioned, but that approach isn't feasible for me since certain foods act as major flare-ups. I've been diagnosed with gastritis, which seems common enough with CFS. I'm still stuck in that endless cycle of trying to figure out what I can actually eat without crashing.
Since I'm still new to all this, it's hard to stomach the fact that there's zero awareness of CFS/ME in the US and we're essentially left to fend for ourselves. It's no wonder doctors try to push anxiety meds or antidepressants on us. I’d love nothing more than for those to solve the problem, but they don't. And sure, I get anxious sometimes—anyone would be feeling the same way under these circumstances. I can't even begin to imagine how you've managed after 13 years...

One more thing... I came across some info on European sites suggesting that bioresonance might help due to its antiviral effects, almost like an antiviral medication. Has anyone here actually tried it?

Honestly, it might be easier for me than for you. I've already made my peace with the impossible.

Nicole Taylor5 said:Honestly, it might be easier for me than for you. I've already made my peace with the impossible.

I was actually just scrolling through looking for my own MS thread when I stumbled upon this one. I guess if I could have one wish, it would be to wake up one morning after a decent night's sleep feeling strong, fit, and actually having the willpower to face the day.
That basically means being free from this constant, crushing fatigue. If you know anyone in Canada—or even just someone you can reach out to—who deals with MS, see if they can lend you a single small box of Enkorten peptide medication. I’m convinced I’d feel that surge of energy after just one injection. You can even use it as nasal drops; lately, I’ve been slowly dripping the contents from the syringe into my nose to avoid the needle prick, and honestly, the effect is exactly the same. But since I have MS, whenever I manage to get my hands on it, I use it every other day.

In their neck of the woods, this stuff is on the national formulary—kind of like how Medicare covers things here in the States—so it’s free for them. If you decide to ask your neuropsychiatrists or neurologists about it, though, don't hold your breath; since it isn't officially registered here in the US, they’ll probably give you a hard "no" immediately. Still, the drug restores strength and stamina (they even use it for asthma, though they haven't fully cleared all the hurdles for that yet).

Seriously, this could totally pull you out of your current slump. It shouldn't be an issue to keep taking your existing therapy alongside it if you really need to, and since a single box only has 6 doses, I highly doubt it'll break the bank. Just try to borrow one box and see.

I’m dealing with this exact same issue. As soon as the humidity spikes and the barometric pressure drops, I feel completely hungover, and there’s just nothing that can bring me back to life. Has anyone here actually tried using guarana?

wiredpuma5 said:I’m dealing with this exact same issue. As soon as the humidity spikes and the barometric pressure drops, I feel completely hungover, and there’s just nothing that can bring me back to life. Has anyone here actually tried using guarana?

Not quite. The issue here isn't just being tired from the weather or low pressure. It's a whole cluster of miserable symptoms—which I've mentioned before in this thread. On days when I'm just exhausted without the rest of the symptoms hitting, it feels like a great day by comparison. As for guarana, I tried it once and it just made everything worse.

Doctors treating AIDS and CFS say if they had to pick one to deal with today, they’d choose AIDS every single time. They actually compare the daily struggle of severe CFS patients to the terminal stages of AIDS or cancer. Personally, I think that's a massive stretch. Someone should go read some stories from CFS patients who were unlucky enough to be hit with cancer on top of everything else.

wiredpuma5 said:I’m dealing with this exact same issue. As soon as the humidity spikes and the barometric pressure drops, I feel completely hungover, and there’s just nothing that can bring me back to life. Has anyone here actually tried using guarana?

The "fatigue" we're talking about is something else entirely. Sometimes I'll be starving, but I literally can't find the strength to get up and grab a snack from the fridge.

It's not the same as feeling wiped out by the weather. And don't even get me started on the pain, memory issues, or brain fog... I'm basically incapacitated. Even in my 30s, I can't take care of myself without help from my parents.

That's why I insisted on using the term Myalgic encephalomyelitis and the G93.3 code in my first post. People constantly confuse Fatigue syndrome with just being tired. Chronic fatigue is just a symptom of many different things, from anemia to AIDS.

And Nicole Taylor5 is spot on. Honestly, I'd take AIDS over this if I could.

Aside from that first year where I was basically housebound, I’m stuck in a moderate phase now. Even though my lab results look pretty grim, on a scale of 1 to 10, I’d put myself at a 2 or 3. Being a guy, I can lean on adrenaline and testosterone to fight off some symptoms... but the real question is how long that actually lasts. Luckily, I’ve restructured my life so I can just pace myself and rest whenever I need to. I’ve managed to mostly get a handle on the physical PEM, even if the brain fog is still hanging around.
silentbear16, I can only offer so much advice since we’re all dealing with different versions of this... but I really want to encourage you to live as much as you possibly can. I know it feels impossible to ignore what's happening to you, but dwelling on it too much will just drag you down even further.

Nicole Taylor5 said:Aside from that first year where I was basically housebound, I’m stuck in a moderate phase now. Even though my lab results look pretty grim, on a scale of 1 to 10, I’d put myself at a 2 or 3. Being a guy, I can lean on adrenaline and testosterone to fight off some symptoms... but the real question is how long that actually lasts. Luckily, I’ve restructured my life so I can just pace myself and rest whenever I need to. I’ve managed to mostly get a handle on the physical PEM, even if the brain fog is still hanging around.
silentbear16, I can only offer so much advice since we’re all dealing with different versions of this... but I really want to encourage you to live as much as you possibly can. I know it feels impossible to ignore what's happening to you, but dwelling on it too much will just drag you down even further.

I'm living on the edge here. Honestly, I'm actually in pretty good spirits considering everything. 🙂

When I can't get out of bed, it isn't because I don't want to. It's because I literally can't. If I just sit up in bed during those periods, my heart rate spikes above 140.

wearyorca15 said:Not quite. The issue here isn't just being tired from the weather or low pressure. It's a whole cluster of miserable symptoms—which I've mentioned before in this thread. On days when I'm just exhausted without the rest of the symptoms hitting, it feels like a great day by comparison. As for guarana, I tried it once and it just made everything worse.

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...

Karen Gomez5... the EBV virus is a super common trigger for CFS. Pretty sure that’s what did it to me. That said, fatigue isn't the only thing you have to deal with. Usually, they look for at least four symptoms to make a diagnosis. You can check out the details here: http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome.

Nicole Taylor5 said:Karen Gomez5... the EBV virus is a super common trigger for CFS. Pretty sure that’s what did it to me. That said, fatigue isn't the only thing you have to deal with. Usually, they look for at least four symptoms to make a diagnosis. You can check out the details here: http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome.

I've already read through this and honestly, I'm not sure what to tell you... I had issues with fatigue long before the mono hit, but nothing anywhere near what I'm dealing with now. So, I keep hoping that all of this is just a lingering effect of the mono... though at the same time, I'm pretty worried because I'm checking off several other symptom boxes too. Sleep doesn't actually refresh me anymore; maybe I'll get an hour or two of rest before the exhaustion crashes back in. Everyone keeps telling me, "Just start moving again, do something, and you'll feel better," which is great advice if you actually have the energy to follow it. Their logic is that since I used to train twice a day and haven't done anything for nine months, my body is just out of whack—they claim if I just jump back into training, my strength will return and everything will settle. But man, this is mentally draining. And frankly, I'm starting to doubt it's just the mono... because if it were, wouldn't it have cleared up after nine months?😢