Fibromyalgia Awareness Day

Once again this year, 2013, May 12th is designated as Fibromyalgia Awareness Day. There are too many people who live with this disease. I have had to count myself among them since 1999, when I was diagnosed with Fibromyalgia Syndrome (FMS) plus Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)—also known as Chronic Fatigue Syndrome (CFS). Add to this chronic daily migraines, and you have quite the pain cocktail.

“Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 10 million Americans. While it occurs most often in women, it strikes men and children, and all ethnic backgrounds. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities.

  • The FM diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history of widespread pain in all four quadrants of the body for a minimum duration of three months, and pain in at least 11 of the 18 designated tender points when a specified amount of pressure is applied.
  • Since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis.
  • Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia.”

Read more here.

One of the most distressing things that people with FMS experience is disbelief from family and friends because we mostly look normal, that is, like there’s nothing out-of-the-ordinary wrong with us. The common phrase we hear is, “But you look so good!” I have often replied, “Thank God for makeup!”

The truth is this: My hair may be nicely fixed and I have taken the time to do my eyebrows and apply some lip color. I may even put on some earrings if I feel up to it. My hubby frequently compliments me on how good I look. But most days when I look in the mirror what I see is a tired and wrinkled old hag. Really. Because that’s how I feel inside.

A typical day for me begins with my daily migraine (usually with nausea) and includes extreme pain in joints and ligaments. I often have pain in my chest similar to what a heart attack feels like. But it’s not a heart attack. It’s called Costochondritis. Even though I am used to these episodes, I still wonder every time if this is the day I am having an actual heart attack.

Stressful? You betcha!

And I haven’t even touched on the debilitating fatigue that is part of both FMS and CFIDS. No matter how much sleep I get, I always—and I mean always—feel like I haven’t slept at all.

I normally wake up between 6:00 and 7:30 a.m. but a couple of hours later I’m already thinking it’s time to get back into bed. Some days I do. Other times I keep pushing myself to get a few household chores done until lunch time. After lunch I either get back into bed or slide into my recliner for a snooze in front of the TV. Even though Rick is always volunteering to do things for me, I thank him and reply that I need to do as much as I am physically capable of doing, for as long as I am able to. It is important to me to at least try to keep things up around the house.

When Rick and I have planned activities such as going out for a meal, meeting up with friends, going to church or even just shopping, I have to prepare myself beforehand with plenty of rest. That doesn’t guarantee that I’ll actually be able to get to any of these planned events, but I at least try. And if I do make it, there’s the payback afterwards—sometimes for days (or weeks), especially if some traveling was part of the activity.

I happen to be blessed with a family and many close friends who do their best to understand all of this. I have had to cancel or reschedule countless activities with them, yet they still stand by me. And for that I am truly blessed.

The Family & Friends Pledge to Care below is meant to be shared with others who may not “get it” and that is very understandable. There is way too much about FMS and CFIDS that even the medical profession doesn’t understand. And if they don’t see these as real diseases, how can we hope for some kind of a cure? Or at least find out what the cause is.

Read more about the Family & Friends Pledge to Care at: http://www.fmcpaware.org/family-friends-pledge-to-care

Thank you for taking the time to read this and visit The National Fibromyalgia & Chronic Pain Association’s site for more information.

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