6 posts shown.
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?
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.
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?
Hey there.
Does anyone know a doctor who actually understands CFS/ME? I'm looking for someone who knows enough about it to provide a somewhat reliable diagnosis rather than just brushing it off.
Thanks.
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.
Hi there. I’m reaching out because I’ve been dealing with this for nearly a year now. My symptoms tend to hit in waves:
- nausea
- chills and shivering
- digestive spasms that send me running to the bathroom
- dizziness
- frequent urination
- a slight Fever during these episodes (peaking at 99.5°F, usually around 99°F)
Once an episode passes, I’m left feeling completely drained, though some days I feel perfectly fine. On top of that, I can't sleep, especially after one of these bouts. From what I've noticed, certain foods, exhaustion, or even just being in a cold room can trigger them.
I've gone through a mountain of tests. They found gastritis, but no HP. I finished the treatment, but it didn't really do much. Back in January, I was hospitalized at Mayo Clinic for a few days with a diagnosis of "Fever with chills." They ran everything from CT scans and bowel passages to MRIs. Psychosomatic issues were ruled out. The only finding was "slightly elevated residual titers for EBV, so we can't rule out Chronic Fatigue Syndrome." So, the official diagnosis: EBV infection—chronic fatigue syndrome observed. No treatment was prescribed. This lines up with what they found at the infectious disease clinic, where they also did a ton of testing and found:
EBV VCA IgM neg
EBV VCA IgG pos 148 AU/ml
EBV EA IgG neg
EBNA IgG pos 105 AU/ml
They told me I'd already "had mono"—meaning it didn't develop into infectious mononucleosis (which makes sense, since I had a nasty, lingering virus last June before all this started), but rather that the virus is doing "hidden" damage. They also mentioned that these results just show a past infection rather than an active one, which is why many doctors don't recognize this kind of diagnosis. Again, no treatment was offered.
My primary care physician seems to agree that doctors often dismiss these kinds of findings 🙂. I've also seen on various international forums that plenty of people are struggling with these exact same symptoms and diagnostic interpretations.
In the meantime, I've tried acupuncture (which helped my stomach a bit), homeopathy, and changing my diet—but nothing has made a significant difference.
To be honest, I'm at my wits' end.🙂
Has anyone else dealt with something similar? Also, does anyone know of a specialist who actually focuses on this kind of thing?
Thanks in advance.