Bren's Story, ME/ Chronic Fatigue Syndrome Sufferer,
For me, living with ME/ Chronic Fatigue Syndrome is like trying
to schedule an appointment without your
calendar in front of you:
You never know what you will feel like on a given day or if you
In the past four years I have travelled to China several times
a year for business.
Shortly after my last trip to China, I started having a strange
tight feeling in my back. It was right around my bra strap line
on my spine. Everytime I would drive or sit in a chair it would
feel like I was leaning back on a large button. It did not hurt.
It was just a little annoying.
At the time I was working a lot of hours and not sleeping much
and over the next month it started to hurt and throb. I then started
having cramping in my back from that spot to my shoulders.
Two months passed and my back had become unbearable. The glands
in the left side of my neck hurt and burned. So that started the
endless rounds of trips to the doctors office and numerous tests
and trips to several specialists.
During that time I saw an Infectious Disease doctor that determined
I had the viruses. He then told me that what I am suffering from
were not the viruses but more
than likely a disease
that is triggered from it.
So that was the first three months of being ill, through which
I slept most of. I remember little from all the pain medications
they had me on.
From that point I saw several more doctors and specialists and
started the wild frustrating journey to get
a diagnosis. After six months I was given a diagnosis of Post
Viral Syndrome and was told that it will go away in 9-12 months.
If it does not it could be Chronic
Fatigue Syndrome or Fibromyalgia.
I was surprised that, in the end, it felt like I was on my own
treatment. The doctor might as well said, 'Yep.
You're sick but it will pass in time, now deal with it!'
The only thing they really suggested was to start going off some
of the pain medications. So I did and it was no fun!!!!
After that I decided to go off everything but my
anti-depressants. I felt like all the drugs were masking my
Syndrome symptoms and the sooner I got off them I could start
to deal with the real symptoms
as they occur.
Right now in my gut I am suspecting I
have Fibromyalgia but I get the feeling my
doctor is a little skeptical and unco-operative. So I am going
to see a Reumetologist to get a second opinion.
Wow. Looking at my description of this timeline it looks like such
a short period of time but living it seems
like I lost a year.
Now it has been 10 months and my
body hurts everywhere. The fatigue is there and I still feel
I am definitely
feeling better than before due to acupunture,
herbs and working on pacing but no where close to what I
was before. I consider being up and mobile around the house - a
huge step after feeling like you have been in a coma in bed for
My one piece of advice to other ME/
Chronic Fatigue Syndrome sufferers is to look at every
avenue that may help you feel better. Some may work for you
even if it hasn't for others.
Thank you Bren, for sharing your story with
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