Discussion in 'General ME/CFS Discussion' started by Alexandra90, Jun 14, 2017.
What caused your ME onset?
Hard to be 100% sure, as lots of bad things happened together. It could have been the combination. Suspicious disappearance of cat, leading to long searches for a long time, leaving job, consequent poverty...
Oh boy, where do I start, probably a lot of events, with a slow decline after each one.
EBV (mono) - 2003 (minor)
PVFS - 2007, 2010,2014-2016 (probably very mild me/cfs)
Bad reaction to nortriptyline (2014), and nerve block (2016)
And the final straw a minor cold (2016) => kaput (moderate me/cfs)
One week I was at work and pretty healthy, the next week I was in the ER (with a diagnosis of 'your healthy'), that seems common.
I first got ME when I was 18, after a long period of stress, a long lasting viral infection and after many courses of antibiotics for different things over the years.
Then I cleaned up the junk food in my diet, cookies, cakes, etc, almost completely stopped drinking and started taking a few supplements. After about 2 years I was able to go back to work full time and function at a very high level.
I didn't continue to take care of myself, drank excessively, started eating junk food again. I got repeated cases of bronchitis, once or twice a year.
I needed antibiotics to get rid of the bronchitis. I am convinced, all the junk food, stress, drinking and antibiotics, destroyed my digestive tract, creating my ME for a second time.
Treating "dysbiosis" and "leaky gut" is helping me a great deal and I believe are the root cause of my ME.
No one knows for sure what causes ME. One of the most prevalent theories is nicely described on OMF's site:
"The disease can be triggered by an infection or series of infections, surgery, another illness, an accident, or any other physical or emotional stressor. It may come on gradually or suddenly. Commonly, people with the disease say they feel they caught a flu, but it never went away. Some report the symptoms starting one day without any apparent trigger."
It's impossible for a person to know what started their ME because it's impossible to separate cause from coincidence. My ME started out of the blue, but I often wonder what if the day before I had been in a car crash, or had surgery or caught a cold? I would be 100% certain that it was what caused my ME when in my case it wouldn't have been connected at all.
I was wobbling on the edge of ME for a while. A naturopath told me to take oil of oregano to "treat candida". It pushed me over the edge from chronic ill-health into actual ME.
Turned out I never had candida in the end. Moral of the story: medicine is dangerous, even if it is "natural".
Oh yes, I also had antibiotics (for a bad cold?), got bitten by a dog and had a consequent tetanus injection, drank much too much, took various prescribed drugs, not least amytriptiline or nortryptyline, eventually took a large overdose and spent a month in hospital as a result of that.
Treating 'leaky gut' helped me a lot for a couple of years...trying to get back there.
@Cheesus -- oregano oil is a hard hitter!
Yeah, multiple health events. 'Final straw' was a spinal injury.
The onset of my symptoms, which worsened very slowly over many years, did definitely coincide with a flu-like illness during a time of very high professional stress, severe sleep deficit, vitamin D deficiency and poor nutrition. I continued working while being sick, which I today think is the dumbest thing you can ever do. No job or client is worth risking ME.
I blame the confluence of these factors for ME. It is probable, but not certain, that the flu-like illness was primary EBV infection (at age 26). I didn't do blood tests at the time, because I generally recovered soon and I had to be in the office until midnight - no time to see a doctor.
Yeah, it basically ruined my life (or at least my 20s)
EBV which was documented.
I really wish I had quit working, "pushing" through. I think I could have recovered.
Chicken pox in 2004. Never been healthy since. One infection led to another. Then no infection phase for few years but other health problems; GI, thyroid, allergies, spinal pain etc. Now back to the infections, pneumonia recently.
I can comfortably say I have vertigo since 2004 chicken pox, it is permanent.
Enterovirus most likely
For me it was longterm stress. I wish I would have known how bad it can affect the body. All doctors kept saying to me that I should keep on fighting against "my brain ghosts", so I did. I thought anxiety was only a sign that I should push even harder to overcome it.
a major surgery.
A bad case of the flu
Cancer treatment - surgery and chemotherapy. Followed by a significant car accident and stressful family tragedy.
But I had a history of mononucleosis, another lengthy and mysterious illness, and frequent and chronic sinus infections.
Mine might have started in 1991 with a spinal cord injury that one doctor thought was caused by a virus in my spinal cord and the associated immune system response. I was never the same after that but I was able to work full time and exercise.
Or, more likely, it was in 2003 when I got a weird one-day flu during a time of very high stress. My energy level was cut permanently by 50% after that, then it happened again in 2004 with another permanent 50% reduction in energy (also at a time of very high stress). My health has been in a slow decline since that first episode in 2003.
So it was probably a virus in my case.
It was a buildup of multiple events.
Longtime antibiotics and accutane for acne when i was a teen really messed up my gut, creating food intolerances and allergies.
But the final straw was being floxed by ciprofloaxin for an unproven intestinal infection... The fluoroquinolone antibiotic pretty much ended my semi-functional life.
I was then diagnosed with Crohn's disease.
The past 3.5 years being treated for misdiagnosed lyme disease with continious use of some very strong antibiotics. and total disregard of my Crohns disease has really damaged my health further.
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