If you don't know who I am, I'm 33, female, single, from the Midwest, living in New England. I have been called fiercely independent, and I have the will of an ox. I have career goals, plans, and dreams I can't imagine not coming true. If you know me, you can probably describe me much better than I just did. :)
I've thought for a while on how to start this blog. I've read other blogs, popped in on message boards, and it’s tough. I don’t know how to begin, or where this is going, but I've been thinking about it regularly enough to decide to at least try.
The weird thing for me is that it’s been easier to tell strangers this than the people I’m close to: I was officially diagnosed with fibromyalgia in November 2012. I suppose this wasn't a great surprise to me, since the word has been part of my vocabulary since I was 15, but getting an official diagnosis is hard. Mostly because there is no blood test that says you have it, it’s mostly just a doctor listening to your symptoms and poking you in different spots to see which ones really hurt (for me, they all do). And, unfortunately, with fibromyalgia, a diagnosis doesn't mean a cure. Basically, for those of you who don’t know, fibromyalgia is characterized by chronic, widespread pain and what they call allodynia…a heightened sensitivity to pain. That seems pretty simple, but the symptoms are varied, many, and hard to live with sometimes. For example, people with fibromyalgia may have:
General Fibromyalgia Symptoms
*Delayed reactions to physical exertion or stressful events
*Other family members with fibromyalgia
*Sweats
Unexplained weight gain or loss
*Cravings for carbohydrate and chocolate
*Headaches & migraines
Vision changes, including rapidly worsening vision
Muscle & Tissue-Related Fibromyalgia Symptoms
*Pain that ranges from mild to severe, and may move around the body
*Morning stiffness
*Muscle twitches
*Diffuse swelling
*Fibrocystic (lumpy, tender) breasts
Sinus & Allergy-Related Fibromyalgia Symptoms
*Allergies
Post nasal drip
Runny nose
Mold & yeast sensitivity
Shortness of breath
*Earaches & itchy ears
*Ringing ears (tinitis)
Thick secretions
Sleep-Related Fibromyalgia Symptoms
*Light and/or broken sleep pattern with unrefreshing sleep
*Fatigue
*Sleep starts (falling sensations)
*Twitchy muscles at night
*Teeth grinding (bruxism)
Reproductive Fibromyalgia Symptoms
Menstrual problems
*PPMD
Loss of libido
Impotence
Abdominal & Digestive Fibromyalgia Symptoms
*Bloating & nausea
*Abdominal cramps
Pelvic pain
*Irritable bowel syndrome
*Urinary frequency
Cognitive/Neurological Fibromyalgia Symptoms
*Difficulty speaking known words, other language impairments (dysphasia)
*Directional disorientation
*Poor balance and coordination
*Paresthesias in the upper limbs (tingling or burning sensations)
Loss of ability to distinguish some shades of colors
*Short-term memory impairment
Confusion
*Trouble concentrating
*Staring into space before brain "kicks in"
*Inability to recognize familiar surroundings
Sensory Fibromyalgia Symptoms
*Sensitivity to odors
*Sensitivity to pressure changes, temperature & humidity
*Sensitivity to light
*Sensitivity to noise
Night driving difficulty
*Sensory overload
Emotional Fibromyalgia Symptoms
Panic attacks
*Depression
*Tendency to cry easily
*Free-floating anxiety
*Mood swings
*Unaccountable irritability
Heart-Related Fibromyalgia Symptoms
Mitral valve prolapse
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack, frequently from costochondritis
Skin, Hair & Nail-Related Fibromyalgia Symptoms
*Pronounced nail ridges
*Nails that curve under
Mottled skin
*Bruising or scarring easily
Hair loss (temporary)
*Tissue overgrowth
Miscellaneous Fibromyalgia Symptoms
Hemorrhoids
*Nose bleeds
*Symptoms I experience regularly
So, what’s prompted me sharing all this with the world? I've had a few times recently when I've been out with friends and been too tired to either stay out late, go out, or just in general “be myself” as most people know me. I imagine part of this comes from having a new job with longer hours and more stress, and I know I am more prone to periods like this when the weather is cold. I've been feeling guilty for not being able to be as much “fun” as I know I want to be, and I have been afraid of disappointing the people that want to spend time with me. It's also hard for me to share this with people because I don't want people thinking I'm making up excuses. Still, this is something that has now daily affected how I make choices, so I feel like now it's time to be more "out" about this. I don't want this to ever become an excuse, and even though I've had symptoms for over half my life, only now am I noticing I truly have to make choices...that as much as my ox-like brain wants to say yes, now I have to listen when my body says no.
The Spoon Theory pretty much sums up a day in my life much better than I could. I hope, if you want to understand more of what a day in my life is like, you'll take the few minutes to read it.
So, I hope you'll understand and bear with me as I go on this journey with a disease in "stealth mode".
Alt 3!
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