27/365: fractured reality/grace under pain (Photo credit: kira.belle)
Sometimes it’s challenging to answer their question when asked, “How are you doing? How are you feeling?” Do they just want the generic, “I’m fine,” or the reality? It’s always a guessing game.
An hour ago, a friend and co-worker asked me this very question. She stopped in my office on her way to another appointment. Now, she truly knows I have health issues and is always concerned about how I feel. We commiserate about our common ground of severe allergies. And while she has general aches and pains from aging, etc., she never tries to make her pain seem more than mine. To her, it’s not a competition of “who hurts worse.” She genuinely cares about me and my health. It’s a rare bird in a sea of harping crows of “Me, me, me!”
It’s difficult to share with others the true state of my being. It’s not always because they don’t care, but because it involves so much! How do you explain that you were an on-the-go, active, vibrant participate in life to barely able to get out of bed in the morning seemingly overnight? My friend made a comment that made me laugh, and all of us FMers know it to be true…”Well, you look great! You don’t look sick!” While this can usually upset an FMer, knowing who it came from and the situation today, it was more amusing than hurtful. There’s a reason they call it the “invisible illness.” I told her thank you, but you would know it if you saw me walk! I look like a hunchback shuffling the two-step, as in baby steps.
So, what does Fibromyalgia feel like?
Fibromyalgia means widespread pain in the muscles, but this syndrome causes many other symptoms. Lab tests seldom validate your condition and the results often make you feel like a hypochondriac. Pressing on tender points can diagnose fibromyalgia, but the exam still does not explain all of your symptoms.
Living with fibromyalgia feels like the flu infection that doesn’t go away. It leaves me exhausted and unable to think or find the right words (symptoms of fibro fog) . With fibromyalgia, I have trouble sleeping and wake up stiff and achy. My symptoms can be debilitating and I feel as though I have to push myself to get anything done.
I have crippling fatigue, even after waking up after a full night of rest. Many days, my strongest desire is to just remain in bed. Certain parts of my body are excruciatingly tender to the touch. My feet hurt and are overly sensitive no matter what type of shoes I wear. Barefoot seems to be the only option (which isn’t possible working full-time in a hospital). I have swelling in my legs and feet, and struggle with anxiety and depression.
My muscles feel like they have been overworked or pulled. They’ll feel that way even without exercise or another cause. Sometimes, my muscles twitch, burn, or have deep stabbing pain. Last night, it felt like I had a tens unit at full tilt on my legs because my muscles were twitching so bad.
Other symptoms include:
difficulty maintaining sleep or light sleep
dryness in mouth, nose, and eyes
hypersensitivity to cold and/or heat
inability to concentrate (called “fibro fog”)
irritable bowel syndrome
numbness or tingling in the fingers and feet
Muscle knots, cramping, weakness
Fibromyalgia can cause signs and feelings similar to osteoarthritis, bursitis, and tendinitis. Some experts include it in this group of arthritis and related disorders. However, while the pain of bursitis or tendinitis is localized to a specific area, pain and stiffness with fibromyalgia are widespread.
How do you explain all that to someone? When someone asks me a simple, “How are you?,” the answer is never that simple.
What does your fibromyalgia feel like? What symptoms of fibromyalgia do you struggle with?
Do you have a friend or family member who understands what you’re going through? What would help encourage you?