Falling down three fllights of stairs.

[Guest guest]

I am no expert....and what I say is only what I FOUND on the Internet and was told by doctors.....and my own experience.

Please don't mistake me for someone who is trying to 'educate' everyone else. I NEED the education. But I am finally receiving it, I am sure.

I fell down three flights of concrete stairs when I was about 3 years old; I had from then on petite mal siezures of epilepsy. When I was ten the doctors removed my meds because they had to stop experimenting due to government mess up, (my meds were numbered and not named).....at the Chicago Children's Hospital...

anyhow...I also had a live polio vaccine... Which left me sick and in pain with my legs for years...which caused me to research back and forth in so many areas...is it FMS or is it E.M. Because of the poisioning I suffered in 1989 on L-trptophan tainted bottles? Or what? I had a flu in 1996 and NEVER got well. Still am sick.

One thing led me to another and another and I was so confused because by that time I had been diagnosed with NINE illnesses. All of them serious but not deadly.

It WAs through Dom that I got hooked up with Jodi at hummingbird site. And I went back to my doctor who originally told me I had M.S. But thought my diabetes was a mis-diag. And so on.

HE has done so MUCH for me....a simple family doctor who digs and digs until he gets the answer. He told me I had FMS but over the years, questions came up.

He found infections in my lungs and things going on in my heart that would be confirmed by tests and confounded the specialists who asked "how could he HEAR that with a stethescope???" He began to search M.E.

(myalgia encephalimyelitis)

anyhow....as it turns out, the CFIDS/M.E. Is NOT the same.

That the renaming of CFIDS is a WRONG thing to do.

M.E. Is a disease by itself and alone and has NOTHING to do with fms nor CFIDS nor CFS NOR LYME disease.

M.E. Is a neruological disease and when I look up the research I have filed away, I can now see the big difference. My myelin sheathe is erroding and my central nervous system is dying off....and it is not the M.S. Nor Is it fibro nor is it CFIDS.... It is the M.E. And the symptoms I have are all a part of the M.E. I WAs in shock when I began to put all the puzzle pieces together.

FIBRO is something that comes mainly from PHYSICAL TRAUMA. STRESS will not CAUSE it. Stress can cause flares of fibro but not the disease itself. ..it is like saying stress caused your broken ankle. You HURT your ankle and suffer from all the pain and even suffer from arthritis later on.....and perhaps stress will cause your ankle to hurt more....but stress did not CAUSE it. And fms could be lying in our bodies for years before coming out and causing us problems. It could be from something that happened as a child; and it could just be something we had passed on through our grandmother's genes (I read where we skip a generation)....

M.E. Is infectious. It is DIFFERENT. The name change is going to cause so much MORE havoc....if we think we have problems NOW, just wait for this change to take place.

The World Health Organization has tried to get these facts through but it seems these things end up in the back columns of newspapers...I received an email from W.H.O. With information and it was that email that got my research going again. I had stopped and just given up.

All I know is to say

DO YOU RESEARCH...ASK questions...and don't stop until YOU are satisfied.

And CFIDS never even existed prior to the 1960's when the insurance men decided to come up with this name for their OWN reasons...and what a DISSERVICE they did to us...

Because the doctors KNOW this and that is why it has been so difficult to get taken seriously.

They are looking at us with 'made up names' for our illnesses....and because we are really sick with REAL illnesses, WE ARe the ones without answers.

I am not an expert, obviously, but I tell you this; M.E. Is a disease that CAN be tested and diagnosed.

Chronic fatigue is a symptom and if you HAVE bee diagnosed CFIDS, you might want to do more research on it....CFIDS was a name MADE UP...it never existed....it is a 'category" that they place other diseases into....so what DO you have ? You need to know. Even the CFIDS organization I had belonged to was questioning this....all the symptoms that CFIDS people suffer is awful....but it is NOT CFIDS.....they need to find what they DO have.

I had been told I had CFIDS and I accepted that as I continued my research and always came CLOSE but never got an ACTUAL diagnosis. One doc says you have fibro and the other says you have CFIDS and still another believes they are ONE and the SAME. WHY? If you look into how the names came into being, you will find that answer.

Fibro is fibro....and if you end up with all these different brain things going on, perhaps you have something else altogether or along WITH fibro.

I do have fibro....but I have M.E. Too.

Also with M.E. It ALWAYS comes from a virus.....ALWAYS. It NEVER comes from a car wreck or fall down the stairs; that is FIBRO .......

I can't explain it because I only researched it and as soon as I close my file, I cannot recall the facts.

I do suggest Jodi's site at www.hummingbird.com

I am upset with those men all those years back that decided to MESS with our illness. WE NEED diagnoses...a GOOD and CONCRETE one.

But we get a bit of this and a bit of that and we don't ever know what we have actually because we are so different from one another......and I found myself

Asking WHY some of those fibromites can do a mile run or work or get up and participate in life when I find myself BEDBOUND and not being able to EVEN BREATHE....and my heart doing jumping jacks.....and being that others seemed like they had such a LIFE, I felt guilty and tried so HARD to exercise the way the docs tell me to in order to PROVE myself to everyone...

And now I found out that I did more harm to my body because of the exercise!

IF YOU ARE WORSE OFF AFTER EXERCISE, THEN YOU MUST NOT EXERCISE.

AND IF THIS IS THE CASE, YOU SHOULD SERIOUSLY LOOK INTO THE NAME CHANGE RESEARCH AND FIND FOR YOURSELF WHAT IS REALLY GOING ON WITH YOUR BODY.

Some of us here have been chemically poisoned and that is what brought us here.

Others - physical tragedy....

Others - bitten by mosquito.

But still others....the entrovirus that is making us remain sick and affecting our hearts and our lungs and we should be finding the right doctors. Here we are so weak we crawl to the bathroom. And those of us who never did 'come back' to even 50% of our pre-illness state, need to seriously look into our illness.

Going to Jodi's site means a LOT of reading and questioning...and you might find her site too much...it was for me. I have to take it in small bites because there is SUCH a WEALTHof information from jodi and doctors who contribute.....I spend my life being bedbound. Like Jodi; yet Jodi will take her 15 minutes each day that she can sit up and get more info to us out here who need to know what is going on.

Dom's site is a miracle......I don't know what I would have done without it.

Between Dom and Jodi, I am learning more and being directed to the right places. But we need to take medical problems onto ourselves and find the answers.

Please, I am NOT AN EXPERT and I am not trying to come off as a 'know-it-all" honest....

I know LITTLE.

I just know what my docs tell me had never made sense with what I was suffering. And then in my Researching. And now that I have found a doctor who takes tests and questions what is happening to me....and is willing to investigate M.E.

I am getting answers.

And 'they' don't' want you to KNOW those answers.

Has anyone read "osler's web" - it is very good, and it did fit me....but the author uses the wrong name....that STUPID name problem again.

Once M.E. was used instead of CFIDS then it all made sense. ALL of it.

Not trying to scare anyone..

But we are all grown up adults.

And we need to take care of our bodies.....nobody else will.

It is up to us.

Roseanne