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Chronic Fatigue Syndrome Community
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Avatar universal

flu like symtoms for months

I have been through hell for the last 6 months.

with these symptoms
lightheadedness
brainfog
flu-like symtoms (especially after physical activity)
very swollen tonsillitis (swollen for 6 months now)
weird warm burning in my chest and throat (especially during/after activity)
skin sensitivity
high pulse/heart rate
sensitivity to sound
low grade fever
insomnia

Life was good before this disease took over my life, I was at the gym 4-5 days a week for years.
But then this invincible disease got me, and it feels like it's killing me slowly.
it all started during a viral/bacterial infection this fall my symptoms began
with a low grade fever , cough and and extreme lightheadedness.
After that flu I never recovered normal again.
It's like the flu that never went away!

the cough went away but the lightheadedness was still there
for weeks and I started getting more and more weird symptoms especially during/after physical activity.
Visited 3 different doctors they all said it was stress related but I know my body I know that stress may affect my immune system but these symptoms was way more complicated. I am today often bedridden because of this disease and I have done all possible test u can imagine , but nothing - all negative.
it's a chronic non stop feeling of being poisoned or having the flu.
Ive done MRI scans blood test lyme tests - nothing nothing nothing , it drives me nuts.
what can this be ?  mold poisoning , mononucleosis cfs/me (myalgic encephalomyelitis)  
lyme disease, fibromyalgia, mycoplasma?

This has ruined my life, been crying many nights because of this,  Im trying to work and meet friends but it's near impossible! my body crashes. Anyone who has been/is in this situation please let me know
2 Responses
Avatar universal
When I was a in college, I contracted the Type A flu, and it was like it just never went away. It was really bad for about 6 months (I felt like I straight up had the flu), then my symptoms slowly disappeared over the next 1-2 years.  To this day, I don't actually know what was wrong with me, but I was diagnosed with chronic fatigue syndrome, among other things.  Like you, I was very active before the onset of my illness.  I played ice hockey for my college, and had to quit the team because I felt too sick to play and I was tired all the time.  It has been a long time since my mystery illness, and it has never returned.  Just in case, I make sure I get a flu shot every year because I'm scared of what might happen if I get the flu again.

I don't know whether the origin of your mystery illness is the same as mine, but my immunologist/hematologist theorized (I may not have this technically correct) that my white blood cells had markers that were similar to the flu markers and it confused my immune system.  So, basically, my immune system thought the flu virus was still in my body and it mounted an immune response.  That's why I felt sick.  I felt his theory made the most sense of all the specialists I saw, so I stuck with him.  He mostly treated me symptomatically.  He did try some things like anti-inflammatories (Indocin), steroids (prednisone), antibiotics (tetracycline, etc) and immunuglobulin infusions.  The Indocin helped, but not as much as the prednisone.  I didn't tolerate prednisone very well, so I had to stop taking it after a few weeks, and started taking Indocin again.  During my mystery illness, I was having problems with frequent sinus infections, and the antibiotics helped with that so I felt a little better.  I don't think the immunoglobulin infusions really helped that much.

Hopefully you mystery illness is time-limited and you can get your life back.

Good luck!
Avatar universal
Thank you for your answer it really means a lot
I am still a mess and I am now trying to experiment a bit with food and see if it can be due to a hidden weird inflammation/allergy in the body due to gluten or like a high toxic load of some sort in my body so detox is next. This is truly a nightmare , it never goes away! the symptoms are so clear and brutal BUT yet so unclear and so hard to verbalize to the doctor , it's so frustrating , it literally feels like you are slowly dying but you still look great on the outside so it's very hard to be taken serious with this invincible disease even though it's worse then anything Ive had (that is visibly by test)
This is worse then anything because you don't know what to fight in your body or how to fight and the worse part is that you get no help from nowhere. My heart goes out to all the lyme - fibromyalgia - ms - als -cfs and sufferers that is going through these terrible invincible diseases and that is often being misdiagnosed - listen to your body and never give up on your diagnosis ,it can be as easy as a vitamin-mineral deficiency or a hidden Gluten allergy (and that one can be fatal as diabetes, read about it) keep finding and searching for answers  look for stealth infections , if you can find someone who can do a dark field microscopy on your blood , DO IT! don't always trust the doctors - and don't be afraid to experiment with diet and beware of new symptoms and try to heal your body in whole (body and soul) and not symptom by symptom with toxic medicine your doctor prescribes that's all much love -

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