Saturday, May 12, is Fibromyalgia Awareness Day. The theme this year is very appropriate: “But You Don’t Look Sick” — The Invisible Pain of Fibromyalgia. Unfortunately, that is what so many of us hear… that we don’t look sick, we are told to learn to live with it, we are overly emotional, or that aches and pains are just part of growing old… try telling that to a twelve year old that has just been diagnosed after months of being told it was all in his head! Until you walk in our shoes, feel our pain, and the pain of our families as they try to understand and comfort us, you will never fully understand what we live with every day. The Awareness Day is to promote education and to inform the many people who may have symptoms that have not been diagnosed, that they need to gather information and see that they are seeing the right doctor to help them. It is also to make the public aware that this disease does exist, and that we and our families exist in a world unknown to many others.
Fibromyalgia syndrome is not easily diagnosed, and compounded with chronic fatigue syndrome, migraine headaches, TMJ, carpal tunnel, you have a person who has pain that affects the muscles, ligaments, and tendons all over their body, with known “trigger points”, where the pain may be the most intense. Most of us have sleep disorders, numbness and tingling in our hands and feet, and have trouble concentrating (often referred to as fibro-fog) or have short-term memory loss, and experience severe pain that “travels” to other parts of the body, and it is very often adversely affected by weather conditions, sleep patterns, activity levels, and stress. It is very important that anyone that has fibromyalgia stay active–walk, swim, exercise, and stretch the muscles, ligaments, and tendons involved. We have to get plenty of “restorative” sleep, and avoid stressful situations… we haven’t found a way to control the weather yet… it’s going to rain somewhere every day. I walk about two miles every day, and stay active out of necessity… I have to work extra jobs, even though I am “retired” from the state. Since first diagnosed, I made a vow to myself that I may have fibromyalgia, but fibromyalgia will never have me. It has helped me cope, and has given me the incentive to keep on being a responsible, productive parent, wife, daughter, friend, and worker. Please remember that just because I have been able to do this, that I am lucky…not everyone is. Too many of us suffer unbearable pain that is disabling and misunderstood. Each person is an individual, and each of us with fibromyalgia can probably tell you a different story about how we developed it (mine came from traumatic stress), others will say that theirs may have come from an accident, an operation, physical or mental stress, or they simply developed it over time…. there is really no definitive cause, and there’s no cure. Simply put, Fibromyalgia won’t kill you, but you will die with it. An estimated ten million people in the United States have been diagnosed with Fibromyalgia. It doesn’t favor anyone… it affects men, women, and children of all ages and races. We live every day, hoping for a cure, praying our families can cope with having to help us if we need them.
If you know someone who has this disease, please try to understand they need your support, that you are trying to understand, and most importantly, let them know that you care.
I received this through the tender points news letter from fibrohugs.com. Ken Euteneier (167 Scarth Street North (Regina, SK S4R 2Z4 who received it from Jane ( a fibromyalgia advocate).
For more information you can visit http://www.fibrohugs.com
Thank you for reading this and passing it on to those who need this information. Education helps others understand that fibromyalgia is painful and confusing
–Lindy Wilcox Fibromyalgia and Chronic Fatigue Self-help Group Lenoir, NC
Co-Leader 828 754 2064
“LOVE BEARS ALL THINGS.” ICor.13:7