FUQ FIbro - Frequently Unasked Questions about Fibromyalgia

Why are you such a jerk?

• The pain causes me to be irritable. I generally try to avoid direct contact with humans except under the best conditions.

Why are you always angry?

•  When the pain is unmanageable, I find it difficult not to snap at people. 

Why do you always look like you're trying to pass a stone?

• That expression is largely due to my headache and the pain in my face, which afflicts each muscle, as well as the underlying bone and sinus cavities. I don't smile often, because my face just doesn't want to stretch itself that way. It seems to prefer being contracted.

Why do you squint?

• I try to get my face into the most comfortable position, and I also need to coax my eyes into focusing. I feel pain in every muscle in my face and sometimes find it momentarily helpful to rearrange the muscles.

Why are you so grumpy?

• I am always tired and very uncomfortable, inside and out.

Why do you keep covering your ears?

• My ears are overly sensitive. Every sound is loud to me. Loudness is not just an irritant, it causes physical pain. A bass beat is like someone boxing my ears. Sharp notes feel like someone is hammering nails into my ear drums. Whatever volume sounds comfortable to a Normal is at least 3 times louder than what is comfortable for me.

Why do you hide in your room all the time?

• My room is often the quietest and darkest place I can go. Often, however, I find out outdoors to be a more peaceful setting, as long as I can keep the sun out of my eyes.

Why don't you come out and play anymore?

• I just don't feel like it. I am most comfortable lying down in a quiet place where I can control the light, sound, and temperature. Besides, I simply don't have the energy to get out more than once a month. Every hour that I'm spending energy to be sociable requires several days of recuperation. If I go to, say a family barbecue, for 3 hours, I generally end up bedridden for several days and quite hopelessly useless for 3 weeks.

Why don't you run anymore?

• High impact activities are very stressful for my body. Each step sends shock waves up my spine. The jarring motion aggravates pain in my neck and head, not to mention my knees, ankles, hips, etc, etc.

Why can't you remember anything?

• FMers experience a condition known as "fibro fog," which causes difficulty with concentration and memory. If I don't finish a task quickly enough, I will forget what I am doing. I often actually think that I've done something, when in fact I never finished the job. 

Why are you so absentminded?

• I am very forgetful and easily distracted. My brain begins each day in neutral. It takes several hours to coax it into first gear, and it seldom gets to second.

Where is your pain located?

• Pretty much everywhere: head, face, neck, shoulders, chest, gut, back, elbows, wrists, hands, hips, knees, ankles, feet, toes, etc.

Where is the worst pain located?

• The top of my neck, where it meets the base of my skull.

How often do you feel pain?

• Every second of every minute of every day, without fail. The intensity fluctuates, but never goes away.

How often do you get headaches?

• I always have a tension and sinus headache, which I refer to as the "background headache." On top of this, I get multiple migraines each day. Like the muscle and joint pain, the background headache fluctuates in strength, but never calms down enough that it does not affect me.

What does your pain feel like?

• In general, it's a lot like having the widespread achiness of the flu, along with a sinus infection, arthritis, and a toothache, and then being struck repeatedly with a baseball bat. 

What makes your pain worse?

• basically everything: sitting up, standing, moving, riding in a car, riding a bike, any kind of exercise at all, massage, stretching, bright light, most noise, odors, chemicals, fragrances, stress, hunger, thirst, lack of sleep, weather changes, wet weather, cool weather, cold air from air conditioning or fan

Why do you like to be outside?

• I consider myself to be cold-blooded. Sunlight and heat give me energy. 

Do you really like hot weather?

• I am a thermophile. My muscles feel looser in hot weather. Cold makes me feel ill, and increases joint and muscle pain.

Does sunlight bother you?

• Yes, but only my eyes and not as much as industrial lighting. I try to keep my head in the shade or wear sunglasses when the sun is bright. My eyes seem to be oversensitive to light, which generally makes light appear brighter. This is especially noticeable at night, when streetlights and houselights appear much larger than they actually are, taking on a star-like radiance.

Is this too loud?

• Yes, whatever it is it's much too loud. Lower it to mute and then tick up a couple notches.

How do you feel when the volume is too loud?

• It feels like a steamroller is squishing my head while someone is driving nails into my ear canals.

Why don't you just play some white noise?

• I do, but that can only do so much. I cannot fight noise with noise. That only creates an even louder environment.

Why not wear ear plugs?

• I frequently do, but my ear canals are sensitive and always feel inflamed. 

Why not wear noise-canceling headphones?

• I can't afford them, and headphones are not extremely comfortable for ears which always hurt.

What methods do you use to protect yourself from loud noise?

• Running away works best. I just try to go wherever there is the least noise. If that is still too loud, I do put in earplugs and earbuds, and I wear headphones over those. If it's still not enough, I bury my head under many pillows.

What do you do about light?

• I try to avoid fluorescent light. When I can't I look down so that I don't directly see the bulbs. I apply the same practice to car headlights and flashlights. Sometimes I end up staring at my feet until the light has passed.

Why do you keep stopping mid-sentence (when speaking)?

• My thoughts are easily derailed

Why are you always rubbing your hands, wrists, forearms, and shoulders?

• They hurt

How long have you had FMS?

• That's anybody's guess. Maybe forever. Maybe since elementary school when I started having headaches, or maybe since junior high when other symptoms revealed themselves, or maybe since high school when the headache became permanent, or since college when I began to feel sick all the time.

With FMS, do you also have depression?

• Yes, many FMers have depression. Which came first is a chicken-or-egg proposition.

With FMS, do you also have anxiety?

• Yes

Why don't you work anymore?

• I can't. I would only be able to work about 15 minutes a day, 3 times a week, at unpredictable times. In addition, I would need to be able to work lying down or reclined with head support. My work environment would have to be virtually silent with dim lighting, and I would need to be free from human interaction.

What kind of work could you do?

• I can write for 10-15 minutes about 2-3 times a week. Otherwise, I'm not good for much of anything.

Why don't you hug people?

• It hurts, and many people use fragrances, shampoos, lotions, detergents, or other products which hurt to inhale

Why do you always take a nap during the day? Doesn't this make it harder to fall asleep at night?

• No matter what I do, it is hard to sleep.

Why are you so different?

• Everything in the world hurts me physically and emotionally

What's up with your eyes?

• They are always dry and irritated. They don't like to focus. They are sensitive to light. It feels like someone is pushing them from behind.

Why haven't you finished this FUnQ?

• The pain and fatigue build up too quickly, and the fog prevents me from concentrating

Invisible Disability Affects Millions of Americans: Understanding Fibromyalgia

Although Fibromyalgia is estimated by the CDC to affect 2% of the U.S. population, the syndrome is little understood. The condition is commonly associated with all-over body pain. However, fibromyalgia's impact goes far beyond muscle pain. For many people, fatigue and other symptoms are even more disruptive.

The CDC estimates that 1 in 30 American women has fibromyalgia. We male patients are a rarer breed, as the disease only impacts 1 man per every 200.  (CDC: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm)

On the SF-36 test of functional health and well-being, fibromyalgia patients scored lower than patients with any other chronic illness in 7 of 8 categories (physical functioning, role-physical, bodily pain, general health, mental vitality, social functioning, and mental health). The one exception was role-emotional.  (SF-36: http://www.sf-36.org/tools/SF36.shtml)

I have compiled below a summary list of the most prevalent symptoms from my own experience. Many of these symptoms (including pain, headache, fatigue, and IBS) are constant, 24/7. Others come and go. In general, I constantly feel like I have the flu and have been pounded with a baseball bat, with a migraine and early-onset senility on top, It's like I get drunk every night and pick a fight with a professional boxer, and every time I wake up I have the worst ever hangover and an epic concussion.

The cognitive impact of fibromyalgia has been my greatest challenge in recent years. It is unbelievably difficult for me to form coherent thoughts the way I could back in high school. If I'm lucky, I have 15 minutes of lucidity in a day. I now have to rethink the fundamentals of how I think and discover new methods to capture and organize my thoughts.

Symptoms:

Headache

• Tension headache
• Migraine headache
• Sinus headache

Locations of other pain

• Muscles
• Joints
• Ears
• Face
• Jaw
• Teeth
• Neck (my worst pain is in the top of my neck)
• Shoulders
• Chest
• Gut
• Back
• Elbows
• Wrists
• Hands
• Hips
• Pelvis
• Knees
• Ankles
• Feet
• Toes

Mental/Cognitive Difficulties

• Difficulty concentrating
• Poor memory
• Difficulty thinking clearly
• Disorientation
• Confusion
• Mid-sentence mental blackouts
• Absent-mindedness
• Insomnia
• Difficulty making decisions

Emotional Difficulties

• Depression
• Anxiety
• Irritability
• Short Temper

Ear, Nose, & Throat

• Dizziness
• Vertigo
• Congestion
• Allergies
• Chronic sinusitis
• Rhinitis
• Dry Mouth
• Postnasal Drip
• Sore Throat

Vision

• Blurred vision
• Tunnel vision
• Difficulty focusing eyes
• Dry, itchy eyes

Sensitivity to:

• Light
• Sound
• Smells
• Chemicals
• Taste
• Cold
• Weather (changes in pressure, rain, etc)

G/I

• Irritable Bowel Syndrome
• Alternating diarrhea and constipation
• Cramps
• Nausea

Fatigue

• Severe Fatigue
• Waking feeling not rested
• Need for frequent, lengthy naps

Joints

• Joint stiffness
• Joint pain

Muscles

• Muscle stiffness
• Muscle spasms
• Muscle cramps

Extremities

• Tingling and numbness in hands and feet (and sometimes face)
• Carpal tunnel-like pain and tightness
• Cramps in hands and feet
• Difficulty holding objects for even relatively short periods (i.e. hand pain after holding a pen for 10 minutes)

Fibro Fog

One of the most frustrating aspects of Fibromyalgia is the "Fibro Fog."

I just feel like I am a lot dumber than I was before. My memory is atrocious. I couldn't concentrate to save my life, and I struggle to wrap my mind around subjects. When I write, I have difficulty seeing beyond an individual scene. I cannot see the big picture, so my writing has a fragmented feel.

My brain has difficulty revving up. The feeling is like my mind is almost always stuck in first gear, at a primeval level of brain function. I can follow what is happening in the moment, but I struggle to think beyond raw observations. My senses send signals to my brain about what is going on around me, and my brain just leaves the input unprocessed. I see, I hear, I smell, but I don't rationalize.

A charmed life?

After this afternoon's two hour nap, I lied in bed reading a book. The thought occurred to me that I live a charmed life. Most Normals are sitting at their unhappy desks in gloomy, gray cubicles, working for idiots. Meanwhile, I and other FMers get to lie around all day, doing nothing at all.

Before this thought was even finished, the reality set in- the bleak reality of constant agony, the exasperating inability to concentrate, the exhausting drain felt after even the simplest of actions, the feeling that I've been 90 since I was 9.

I sat here at the keyboard, believing I might be able to focus long enough to bang out a blog post, but I can't get through three words without my mind freezing up. Words once came to me when I needed them. I was once able to complete a sentence without losing my train of thought to this mental BSOD.

How can I consider this life to be charmed? A better word for it would be cursed. I am cursed with eternal pain and exhaustion, never able to remember, never able to complete what I begin. Doomed always to rely upon others.

Conquered by FM back when I was young and vibrant, my life has slowly wasted away. I'm 35 years old, and I've accomplished nothing. Each time I've reached for I dream, my arm has been pulled back by an invisible adversary. The whole of my existence can be summed up in one word: pain.

Pain is my everything- my bitter enemy, my constant companion, my bitter enemy, the mother and father of my every action, the center of my every thought. Every minute of every day, my goal is simple- minimize the pain. I must avoid anything that may increase the pain. In so doing, I avoid anything that may bring pleasure. I avoid anything that may bring satisfaction. I avoid life itself. I feel forever unsatisfied, always tortured, alway pained.

A Charmed Life? A Pained Life

Introduction

Bros with fiBro

A blog by, for, and about men trying to deal with fibromyalgia

Welcome.

On this blog, I will be sharing my experiences as a man with fibromyalgia (FM), which is three times more likely to occur in women. I would also like to create a forum where other men can share their FM experiences.

Overview
Widespread pain and constant fatigue are the two primary symptoms of FM. These two factors conspire to limit my productive time to 5-15 minute blocks, which, if I'm lucky, occur 5-8 times in a day, for a total of 1-2 hours of usefulness. Unfortunately, the majority of these productive periods are consumed by such essential activities as eating, getting water, using the toilet, bathing, and dressing.

I generally have 15-20 minutes a day to accomplish some task beyond basic bodily requirements. During these periods, I schedule medical appointments, slog through disability paperwork, and generally just try to keep up with outside demands. 3-4 times a week, I am able to devote a productive chunk to a hobby, such as writing.

All of this has been my roundabout way of explaining why this blog may not be updated as often as others you follow.

Daily Life
wake up

lie in bed
eat breakfast
rest
bathe
rest
perhaps complete a chore
rest
eat lunch
rest
chore/hobby
nap
rest
eat supper
rest
brush teeth
sleep

During some of these rest periods, I am able to read. Otherwise, I watch TV or try to sleep.


My first series of posts will cover the symptoms from head to toe, one chunk of anatomical real estate at a time. Afterward, I'll post a list of Frequently UNasked Questions (FUNQ).
I'll try to clean this up when I can, but I'm tired now, and my head is throbbing a little more than the baseline.

Thank you,
Hutch