Letter To Loved Ones
There are many spouses, friends, and family members of Fibromyalgia (FM) and/or CFS/ME
patients who think the pain and suffering we endure is an attempt to get their attention.
Often times they don't realize that we suffer from a disease that is invisible; a disease
that there is no cure for, and one that many in medical community are still unaware of.
The pain is relentless, stealing our joy and replacing it with tears of sorrow, pain and
frustration. On the outside we look like everyone else, but on the inside are the scars
no one sees. Scars that will never heal.
Yes, It's Real
Researchers have found evidence of distinct neurological abnormalities within the brain
of CFS/ME patients. There are more than 4,000 articles in the peer-reviewed literature
that provide evidence of abnormalities in multiple body systems of CFS patients. Brain
Imaging Study Points to Oxidative Stress: Dikoma Shungu et al. at Weill Cornell (NYC)
compared levels of various brain chemicals in 15 subjects with CFS (1994-Fukuda), 15
subjects with major depression and 13 healthy volunteers. There were differences between
the two disease groups and healthy controls, but not statistically significant differences
between CFS and MDD in the main analyses. In other exploratory analyses, they found that
ventricular lactate and cortical GSH were inversely correlated, suggesting a role for
oxidative stress in CFS. This study was funded by the CFIDS Association.
(NMR Biomedicine, Jan. 27, 2012)
Other researchers have found elevated levels of spinal fluid substance P, a pain
amplifier; along with lower levels of serotonin, a chemical messenger that transmits
nerve signals between nerve cells, and low production of cortisol in FM patients. The
American Medical Association (AMA), the World Health Organization (WHO), and the National
Institutes of Health (NIH) are among those organizations who have accepted FM and CFS/ME
as legitimate physical conditions and as major causes of disability. This should prove
without a shadow of a doubt that FM and CFS/ME are real, physical medical conditions, not
a figment of our imaginations.
FM and CFS/ME effect the person physically, emotionally, psychologically, spiritually
and socially. The once energetic person is now replaced by a person dragging
themselves through the day in agony. The once fun-loving person is now living in the
depths of despair and depression. The person who once felt valued now feels as if life
has passed them by. Even the most devout begin to question why they must endure such
pain, fatigue and misery. But the worst part of all is the misunderstanding, mistrust,
and general ambivalence towards our pain and suffering. Our lives as we knew them are
over. We are no longer able to have fruitful careers, manage our homes, or even take
care of our children properly. Now the simplest activities are fraught with pain and
Before we became ill we were organized perfectionists who were incredibly
productive. Everything in our lives had its place; it kills us that it's not that way
now. People with FM and CFS/ME live their days moment to moment, not able to plan
for tomorrow let alone next week. We never know when a sudden flare will send us into
a world of pain and agony. Many times we can't even think of the words we need to finish
a sentence, making us seem demented or deranged in the eyes of others.
When was the last time you were in agony, yet unable to find a comfortable position? Or
when was the last time the medicine you took made you so sick you couldn't leave
the bathroom? People who live day to day with a chronic illnesses such as FM or CFS/ME
need your help and support in order to cope with their condition. We need to know you
care about us, and that you support us emotionally and physically. Deep inside every
person with FM and CFS/ME is someone screaming to be loved, helped, supported and
understood. Your loved one with FM and/or CFS/ME needs you now more than ever. Please
don't let them down!
Written by FMCFSME - Fibromyalgia & CFS/ME since 1977, FM/CFS/ME RESOURCES. This letter MAY be reprinted providing the source is included.