Illness before illness?

Sophiedw

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Did anyone find their immune systems breaking down for years before their ME? Strange symptoms ranging from anything like digestive issues, weird infections other immune stuff, periods of fatigue, increasing alcohol intolerance, developing weird reactions to stuff, things like roseaca, endometriosis, pcos etc. You get the idea. Or did anyone go from complete good health without ever having had a single strange symptom or unexplained illness to ME?
 
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I had a severe virus infection at 11, several bouts of gastro problems late teens and early twenties, dental abscesses. I'd say the answer is yes! Mine has been a slow build-up to a 'glandular fever type' (quoting GP) illness after which I was diagnosed with ME/CFS.
You almost described my own situation. In hindsight, there where a lot of indications pre-CFS. I also think it is important to look at those to find the root cause.

I had mycoplasma pneuomonia at age 9. No dental abscesses, but during my teens I had a period of regularly having canker sores if that is the right word (small white wounds on the inside of my lips). At age 18 I was diagnosed with IBS. 5 years later CFS started with a fever (and very slightly swollen glands + chronic tonsillitis). I tested positive on mono.

So to me it all seems immune system related. The IBS was never about food sensitivity but a heavy reaction of the immune system to something in my body. In fact, my IBS was gone 3 years later as my immune system became weaker (and then CFS started...).

I also had a tick bite around the period I had mycoplasma. It could be lyme (but I don't fit the criteria and tested negative), or maybe the herpes theory. It could as well be an unknown pathogen transferred with the tick bite, or maybe mycoplasma is the root cause. Still I think the clues are in there, just don't know where to start.
 

Boba

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No dental abscesses, but during my teens I had a period of regularly having canker sores if that is the right word (small white wounds on the inside of my lips
Wow. I started to get those in my twenties. Besides other infections in my mouth like sores at the inside of my cheeks. Didn’t really care about it. Thought it was due to smoking and stress. Got rid of them once I reduced stress and started to work on parasympathetic system .
 

Judee

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I couldn't get rid of constant colds.
For me the colds came afterward. One time I had a 6 week cold and was finally getting over it when 2 weeks later it started coming back again.

My nose used to get so sore from all the blowing before they had lotioned puffs that I would iron the kleenex with a steam iron to try and soften up the fibers so they wouldn't hurt my nose so much.
 
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My nose used to get so sore from all the blowing before they had lotioned puffs that I would iron the kleenex with a steam iron to try and soften up the fibers so they wouldn't hurt my nose so much
I dated a guy in grad school, who lived on large quantities of sweets, and often had bad colds.

He would buy pounds of Candy Corn for finals, and was the only person I ever knew to purchase those marshmallow peanuts. :sluggish:

He had a drawer full of handkerchiefs. Never use tissue: it shreds the nose. And never get rid of an old worn cotton sheet.
 

ljimbo423

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Did anyone find their immune systems breaking down for years before their ME?
My immune system was under active/low starting at a very young age. I had many ear and throat infections, abscessed tonsils, etc. Then in my early teens, I started to get bacterial bronchitis after a cold or a flu, once or twice a year for a few years.

EDIT- Ironically, my immune system now is over active, not under-active. I haven't had a cold or a flu in 10-15 years or longer.
 
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gbells

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Did anyone find their immune systems breaking down for years before their ME? Strange symptoms ranging from anything like digestive issues, weird infections other immune stuff, periods of fatigue, increasing alcohol intolerance, developing weird reactions to stuff, things like roseaca, endometriosis, pcos etc. You get the idea. Or did anyone go from complete good health without ever having had a single strange symptom or unexplained illness to ME?
I had some intermittent deep bone "growing pains" at age 30, panic attacks but that was 8 years prior to developing full blown ME. It started when I rented a room from a man with ME who had a cat. He basically sat around on a couch and watched a lot of tv, had oxygen. That's when the panic attacks started. I think I could have gotten something from him as we shared silverware and there was a cat. At that time I knew nothing about ME. He lived about 10 years then died.
 
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For me the colds came afterward. One time I had a 6 week cold and was finally getting over it when 2 weeks later it started coming back again.
I had slightly more colds 2 years before CFS, but it mostly was the timing that was odd (middle of summer). With CFS I had 'colds' every time I went over my limit.

I think those were not colds, but just the symptoms (rough throat, running nose, etc.) caused by the immune system reacting to something. As far as I know cold-like symptoms also develop when the pathogen (if any) is somewhere else in the body (far from the throat/nose/sinus/...).
 

ljimbo423

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I had slightly more colds 2 years before CFS, but it mostly was the timing that was odd (middle of summer). With CFS I had 'colds' every time I went over my limit.

I think those were not colds, but just the symptoms (rough throat, running nose, etc.) caused by the immune system reacting to something.
As far as I know cold-like symptoms also develop when the pathogen (if any) is somewhere else in the body (far from the throat/nose/sinus/...).
This is what I've learned also. For years I was certain I was catching every cold and flu around. I spent almost as much time sick with these "colds or flus" than time without them.

I was very sick then with ME/CFS. Now that my symptoms are much milder, I still get what feel just like a cold or a mild flu but they are not. I've learned they are ME/CFS flares and now only last a day to a day and a half.

They use to last anywhere from 5-14 days when my ME/CFS was much worse. They never last more than 1-1 1/2 days now, so I know they're not colds or flus.

I also have taken very high doses of immune boosters like astragalus, rieshi, and cordyceps. The equivalent to 12-14 grams a day, which made no difference in how often I got what I "new" were colds or flus at the time.

This makes it very clear to me that these are and were actually ME/CFS flares and not colds or flus.
 

keepswimming

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I always had a poor immune system when it came to colds, viruses etc, I'd catch everything going and feel quite poorly with it. When I was 11 I had a month off school with fatigue after a virus. I also suffered with migraines, eczema and IBS. It was a bad case of EBV which triggered my CFS.
 
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This is what I've learned also. For years I was certain I was catching every cold and flu around. I spent almost as much time sick with these "colds or flus" than time without them.
...
They use to last anywhere from 5-14 days when my ME/CFS was much worse. They never last more than 1-1 1/2 days now, so I know they're not colds or flus.
In turn I can also confirm the cold symptoms used to last for 4-5 days after one active day. As I got better it got shorter, but I think also more intense. At my best it was just one day of a relative intense cold. I got worse afterwards because I consistently tried to do more in a day. Noteworthy is that shortly before and after that good period, while my immune system was a bit stronger, my IBS also was worse.

I wonder if those 'colds' are just the immune system cleaning up the toxic waste of the anaerobic energy system (what normally should be done by other means) instead of a real pathogen. The whole aerobic vs anaerobic resonates a lot with me. In that case, the metabolic trap and related hypothesis makes more sense than a pathogen.
 

xebex

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I had severe migraines and also every winter I’d get a nasty chest infection, i also lost my voice quite severely several times. I always had poor alcohol tolerance but it got worse and worse to the point that I would get a hangover from one sip. Bizarrely once I got ME the migraines became low grade and the chest infections disappeared.