A new Fibromyalgia patient of mine gave me a letter that described many of the symptoms that, I’m sure, most patients suffer with. I’ve never had a patient write down in such a sincere emotional manner what they are going through. I’m sure many of you who suffer from this condition will recognize and agree with this patient’s struggles. At their request we will not be mentioning the patient’s name. What follows is the letter.
My Fibromyalgia – pain description on myself.
After hearing people comment about myself and fibro, you don’t know my daily struggles with life and chronic pain. There are a few things I would like to say.
No one that has fibromyalgia is making up symptoms. It’s not in their heads. We don’t want want attention. We are not pill poppers or junkies or lazy. I had a full life before the disease. I work in the medical field and I was part of a program dealing with pregnancy, teens, drugs and alcohol programs. I was well-rounded in my profession and worked hard and was there for my child. I took my family on vacations, went to the movies, went to the park, shopping and cooking were my favorite. I went to amusement parks and rode rides with my child and spoiled my child.
Now that being said, fibromyalgia can be brought on by traumatic events, which I had numerous. The recent one was when I fell at work, injured my lower and upper back, knees, elbows, ankle and neck.
Fibromyalgia is much more than aches and pains. It’s rashes and itches. It’s hot and cold flashes. It’s stomach problems and loss of memory. It’s living in constant state of fog that masks you, making you unable to remember. You are unable to focus on your favorite pastimes, living with confusion and fear. It’s giving up everything you enjoyed. It’s having to rest after getting dressed or taking a shower. It’s being unable to take a bath because you can’t get out of the tub. It’s losing your balance and having your family worry about you passing out. It’s chest pains that mimic heart attacks. It’s insomnia while feeling brain dead. It’s being cut off from your family and friends. It’s missing important events because you can’t handle them. It’s panic and anxiety attacks. No, life with fibromyalgia isn’t what I’d wish on my worst enemy.
Pain, it’s not just stiffness, it’s flares, when I feel my bones are broken and my muscles being rung out like a wet rag. It’s having your body feel like lead. Your skin is so painful that sheet fabric hurts. It’s having your hair hurt like someone’s pulling it. It’s pain from your lower back to your toenails.
I’m not lazy, yet it takes a great deal of exertion to perform everyday tasks. It takes me up to three times the energy just to get dressed and I own more pajamas than clothes.
It’s weight gain and failed diets. It’s losing ourselves piece by piece until we no longer recognize who we once were, and now feels like a dream. It’s having friends afraid of you, and your family considering you’re making things up and doctors saying what you feel is all in your mind. It’s not being able to be touched or hugged because it hurts, and people don’t understand. It’s not being able to be intimate with your spouse.
It’s failed meds and unresponsive treatments. It’s frustration filling shoe boxes with meds. It’s hopelessness when nothing works. It’s doctors just looking to push meds off on you without listening to your problems.
It’s watching your family do things you can’t do with them. It’s missing the fun. It’s having your friends as chatting support.
It’s a constant drain and feeling an exhaustion that keeps you confined to your house, your bed, your couch.
Fibromyalgia is not a joke. It is not a game we play to get us out of things we don’t want to do. It’s a constant reminder that life as I knew it is over and will never be the same. It’s watching your child/children grow up and feel as though you were not present in their lives.
This patient just started our protocol. Hopefully the next letter will tell of a much more successful story.
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