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.

Background

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 agony.

Currently

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 Misty Roberts, Fibromyalgia & CFS/ME Patient since 1977, and owner of FM/CFS/ME RESOURCES. This letter MAY be reprinted providing the source is included.