Speed humps in life

There used to be a sign near the road in front of our house that read, “BUMP.” One afternoon, three city workers took an hour to change out the sign. The neighborhood had asked for a STOP sign, so we were hopeful when we saw the BUMP sign coming down. To our surprise the city workers replaced our BUMP sign with one stating, “SPEED HUMP.”

Is “Speed Hump” infinitely more effective than “Bump”? I can’t say that I have reached that conclusion. My guess is that someone somewhere on the city’s payroll was able to cross off some task on a task list by changing the sign. Cars still speed by, using our street as a cut-through from one side of town to another. I have seen cars hit the hump/bump with great force, rattling the automobile as it lands on the other side of the hump/bump. If the rattling and knocking a car out of alignment isn’t a deterrent, I doubt changing the sign from BUMP to SPEED HUMP will slow drivers down.

I have come to think of Fibromyalgia as my speed hump. It slows me down, causes me to take divergent paths, and even knocks me out of alignment at times. The difference is that no one put up a sign to warn me that this was coming. If I would have known ahead of time, could I have taken precautions, slowed down, or been prepared? I doubt it.

How does one prepare for something that is invisible, something that has varying symptoms that can change location and severity as quickly as the wind changes directions? Fibromyalgia affects 3% of the general population. It is estimated that over 200 million people (85% of which are women) world-wide suffer symptoms of fibromyalgia. Roughly, one-fourth of the sufferers are work-disabled due to the varying symptoms of pain, fatigue, memory/concentration issues, sleep disorders, exercise difficulties, and associated issues of IBS, TMJ, chronic headaches, non-cardiac chest pains, etc. Fibromyalgia often co-occurs with other conditions, such as rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis, yet it is invisible.

What may seem like a speed bump to one fibromite, is a debilitating symptom to another. Currently there is no “magic pill” for fibromyalgia, and the treatments aim at simply managing the symptoms. The treatments are as varied as the symptoms. What works for one sufferer, may not work for another. I am thankful that I am able to work and enjoy a mostly normal life with my fibromyalgia. Many of my fibromite friends are not so fortunate.

I feel the need to erect signs along the side of the road to make folks aware of fibromyalgia and aware of my fellow fibromites. Awareness is the first step towards more research money, more compassion for sufferers, and hopefully better treatments to help manage this invisible illness.

Now that I think about it. Maybe the SPEED HUMP sign would work if the hump/bump in the road was more like fibromyalgia. If the bump/hump was invisible and changed locations and dimensions hourly, maybe drivers would be on the lookout for the warning sign telling them that the SPEED HUMP was up ahead.

My Fibroduck Arrived

I received my Fibroduck today. She is already dreaming of slack packing the Appalachian Trail one day. She knows that prior to fibromyalgia hiking and camping were two of my favorite activities. I hope to camp a few weekends in 2012, so I can slowly begin hiking again. She wants to go on adventures with me, but she promises to remind me to start low and take it slow (as my rheumatologist says).


Visit fibroduck.com to see photographs of this and other fibroducks. Fibroduck.com explains the fibroduck:

     People with fibromyalgia and ME/CFS were almost always hard-working and fiercely independent  people. Now that they are ill, their pain and fatigue prevents them from living the lives they had before. Tasks that used to be easy are now very difficult, and many people cannot do the things they once took pride in. They often have to rely on others, and often stress about what goes undone.

We picked a duck to represent people with fibromyalgia/ME/CFS because having these conditions makes them feel as though they are operating in an unfamiliar world – like ducks out of water. A duck on land can still get about and do things, but not as quickly and fluidly as it would in the water.

The dots on the duck represent the painful muscles and joints experienced by people with fibromyalgia.

So, the challenge is to draw attention to fibromyalgia by sending in pictures showing the duck in places a duck wouldn’t usually go, and doing things a duck wouldn’t normally do.

I appreciate the work fibroduck is doing to bring awareness to fibromyalgia. I will do my best to help raise awareness of all invisible illnesses. Will you help too?

Dang, not another fibro flare!

Fibromites are a lot like Humpty Dumpty. When we “fall”, it is difficult to put us back together again. An injury tends to spiral out of control into a fibro flare. About two years ago I suddenly turned into a klutz, or so it seemed.

My fifty pound pittador retriever (one of my rescue dogs) was racing through the house towards the back door with an antler in his mouth, eager to run outside to play, when he clipped the back of my legs. My legs flew out from under me, and I landed on the floor with my back straddling two steps.

The dog went outside to play without me without even realizing I had been sidelined. Since that moment, my left elbow and shoulder have hurt daily. My knees and back have never been the same. Two and a half years later, I am in physical therapy trying to strengthen my knees.

I believe that this fall may have somehow triggered my fibromyalgia. Yep, fibromites are like Humpty-Dumpty. GPs, PTs, chiropractors, orthopedists, rheumatologists, and all the king’s horses have all tried, to no avail, to put me back together again.

Of course it doesn’t help matters when I continue to injure myself. Ten and a half months ago, I slipped on icy steps during one of Atlanta’s rare winter storms and landed on an ice-covered cement path. I was knocked unconscious for what I believe was only a split second and suffered a concussion.

With this fall, one of my pittador retrievers came to my rescue. She pushed her head under my body and managed to shove me towards the steps. I wrapped my arms around her warm fur, and I let her drag me into the house. I call her my rescue dog now (instead of my rescued dog).

So, am I a klutz or do fibromites push their tired, aching bodies to the point where it is difficult to recover from one tiny misstep? Are fibromites too weak to support the activities we push ourselves through?

Just last night, I fell again. I went to work, went to physical therapy, went to my son’s school and stood on cement for one hour happily viewing the night sky through a telescope … my legs were exhausted. I came home, and I fell directly on my sore knees. This morning when I attempted to crawl out of bed, I realized my hands, shoulders, back, and ankles were also sore from the fall.

Dang, not another fibro flare! Will they ever put Humpty-Dumpty back together again?

You ain't nothin' but a hound dog

When I was little bitty baby my mama would … push my bassinet up against our console stereo speakers. My favorite lullaby was Hound Dog by Elvis Presley. I fell asleep to Elvis each night, and I became accustomed to music of my parents' generation at a very early age. It was no surprise when my sister was born 3 1/2 years after me, and I decided that we needed to call her "Bo" for Bo Diddley.

As I grew older I started discovering music that I liked, not just what my parents liked. At age five I liked my 45's – A Spoonful of Sugar and other Disney classics. By the age of seven, I moved to 8 tracks - Joy to the World by Three Dog Night. By nine I had a mix of vinyl and 8 tracks - I was a huge Partridge Family fan.

While listening to The Partridge Family Notebook, I realized that some singers did not write their own music – in fact, only David Cassidy and Shirley Jones actually sang on the album. I started looking for singer-songwriters. I wanted to know who wrote the great songs. I discovered Mac Davis and Dolly Parton. I dreamed of one day learning to play acoustic guitar and writing songs like they did.
My anthem became Mac Davis' song, "I Believe in Music". 
 

Music is love, and love is music, if you know what I mean.

People who believe in music are the happiest people I’ve ever seen.

…

Music is the universal language, and love is the key.

To peace, hope and understanding, and living in harmony.

…

I, I believe in music.

Oh, I believe in love.

I went to college in the early 80's, so of course I listened to Culture Club, Rick Springfield, and Duran Duran - on cassettes instead of vinyl or 8 tracks. I carried my huge cases of cassettes from dorm room to apartment. Many nights I had to use a pencil eraser to rewind the tape onto the cassette.

Fast forward many years, my cassettes being thrown in boxes under the bed as I moved to CDs. I discovered an entire group of female singer songwriters who wrote folk/punk/rock blends - Indigo Girls, Ani DeFranco, Dar Williams, Catie Curtis, Michelle Malone, to name a few.

Many people download music digitally, but I continue to seek out independent music stores to buy CDs. I love the liner art and physically holding the CD.

I love to attend concerts when the fibro allows me to, although I typically suffer for days later. Music helps me cope with my fibromyalgia. It calms me, reduces stress, and sometimes makes pain seem less painful. In the months to come I plan to tell you all about the CDs I am listening to, concerts I attend, and songs that make me ponder fibro. Do you believe in music?

You got to know when to hold 'em, know when to fold 'em…

Starting sometime in the early 90’s, I remember asking people, “What do you do with your hands at night while you sleep?” Mostly I received blank stares from people who obviously had never thought about their hands at night. I guess, like most body parts, we don’t think about what happens to them when we are slumbering. Well, my hands were hurting at night even way back then, decades before from my fibromyalgia diagnosis.

My hands hurt at night, and many times I cannot find a comfortable place to put them while sleeping. From the 90s up until a few years ago, doctors would say that it must be carpal tunnel syndrome. They would hand me a brace to sleep in and send me on my way. I thought I looked like a Borg from Star Trek when I strapped on my brace. Who knew that many years later I would end up wearing assorted medical devices at night just to limit the daily pain?

Fast forward many years, and I still do not know what to do with my hands while I sleep. I start the night with them folded (ever conscious of not bending them at the wrist) on one another somewhere near my face as I try to fall asleep on my side. As they start to hurt I straighten my arms and lay them at my side. Sometimes, the hand pain seems to migrate up the arm, and I have to spread out like I am being crucified to get relief. Hanging them off the bed makes them fall asleep. Bending at the wrist has a pins and needles effect. If I start to worry about them, I clinch them, which causes more pain. No matter where they go, they feel heavy and throb. Many nights they feel swollen. Occasionally I get a sharp, stabbing pain like the ones I get in my knees when I sleep. I have to move them immediately – they feel like they will break if I don’t.

Last week, when my hands had a particularly bad night, I decided to try the compression gloves I had heard about for arthritis. I perused my local Walgreen’s and found the beige ones that make me think of Halloween or really old people. They were a tad too creepy for me to purchase, so I started looking online. I found a site called TommieCopper.com that sells compression items (gloves, shirts, knee sleeves, etc.) that don’t look creepy. It may be an old home remedy that copper helps pain, but I was sold once I read that the cute, black gloves were infused with copper yarn. I ordered a pair of fingerless compression gloves that claim to ‘reduce swelling and increase range of motion in hands and fingers for a great night’s sleep.’

My gloves, pictured at the beginning of the post, arrived Saturday. I have slept in them for two nights, and am wearing them as I key this post into my computer. It is too early to tell if they increase my range of motion, but I believe they helped my hands while I slept. I will continue to wear them and post my results soon.  Do your hands hurt at night? If so, what works for you?

Is sleep overrated?

Fall is here. The evidence is all around me - cooler days, the sun setting earlier than last month, pumpkins appearing on porches, ragweed blooming, and leaves blowing about the yard.

I have always liked the Fall season, mainly because Halloween and Thanksgiving are such fun holidays. Due to my fibromyalgia those holidays weren't as fun last year. My foot was in a walking boot due to plantar fasciitis. Wearing the boot threw my body into some odd position that seemed to aggravate my back and legs (I also have scoliosis), so I didn't sleep well due to the pain. Not sleeping led to massive fatigue. As usual, it started a vicious cycle.

I remember going to my doctor's office on a weekly basis complaining of fatigue. The first week he said it might be due to the blood pressure medicine I had just started for PACs, or the fact that I quit caffeine as the cardiologist suggested. I stopped the blood pressure medicine. The next week he said fatigue might be caused by low vitamin B12 or swollen sinuses due to ragweed; we tried B12 injection and steroids. The third week I went in crying, telling him that I was totally exhausted from head to toe, so fatigued that I couldn't lift my head off the pillow, yet in pain and couldn't sleep more than an hour  a few times a night. Going to work each day was draining the life from me. He did blood work to "See what was wrong". He called me the next day to say my blood work was fine and started me on Ambien.

At first Ambien was a godsend. I was able to sleep. Instead of being fatigued constantly, I was just a little groggy and tired the next day. I noticed I did not recall dreams while on it, and I awoke in the exact same position I collapse in. Then as winter approached I realized that I didn't remember what happened in the evenings at home - entire movies watched with the family erased from my mind, meals that we had eaten forgotten. The edges of my ambien nights, mornings and evenings, were a blur. I was only truly awake from noon to 8PM. As one can imagine, I soon became a zombie. I moved through the mornings and evenings with no awareness, clarity, or memory of the day.

I don't know how to explain it, but even though ambien made me lose track of part of my life, i was afraid to stop it. At least I had half a day. Before ambien I was so fatigued that I didn't really have a day. So stayed in it and lived the mechanical zombie life until my doctor suggested I see a specialist.

When I finally saw a rheumatologist, he asked me to stop ambien and try trazadone at bedtime. The switch made an instantaneous difference. I awoke refreshed and felt like I had slept for the first time in a year! I started recalling evenings and mornings. I got my life back.

As I watch the leaves fall outside my window today, I think of last fall, and how I missed so many months of last year while living in the constant zombie-like state of fatigue. Sleep is not overrated. It is necessary for life. Sorry Bon Jovi, it makes a great song (I’ll Sleep When I’m Dead), but in reality not sleeping turned me into the living dead.

I cringe when I hear people casually toss around the word "fatigue". A friend mentioned that she was fatigued from all the concerts and activities she attended over the weekend. She remembers what she did the night before, this morning, and over the weekend, her eyes are not sunken into her skull, her face doesn't look hollow. She is "tired", but not "fatigued".

Perhaps only someone who has experienced the life-sucking power of fatigue can understand the difference. I think I will sit here with my cup of decaf and watch the pretty colored leaves fall off the trees, and remind myself to be thankful later today when I am able to remember what I did this morning.

What is the secret to coping with fibromyalgia?

Humor! Humor is the secret to coping with fibromyalgia. I have to laugh at myself once in a while to keep from crying. I plan to post Fibro Funnies when something makes me laugh. I invite you to share your fibro funnies too.

Just the other day I had a humorous conversation with my family as I opened a bottle of vitamin D3 to take with my evening meal.
Me (what I thought I said): There are 100 caplets in this bottle.
Family's Response (as they laugh out loud): Well, let them out.
Me (what I actually said): There are 100 catholics in this bottle.

My son continued to laugh hysterically as we discussed what I said vs what I thought I said. He thought that I mentioned the neighbors by their last name. He couldn't imagine why I thought they were in the bottle. I felt a bit relieved, because I am not the only one who makes mistakes.

Fibro Fog oftens causes me to say one thing when I mean another. Sometimes it causes me to spend minutes trying to find the word I want to use, because I know the word that is trying to escape from my mouth is incorrect. Often I end up staring back at folks who are looking at me strangely, as they attempt to figure out what the hell I meant to say. Fibro Fog is my nemesis.

Why hang on tight?

I was at a concert Saturday night (yes, I paid for it on Sunday and Monday) when Emily Saliers introduced a new song as a happy, apocalyptic, typical Indigo Girls song about death. Obligatory laughter came from the audience, and as the song started I thought about one of my favorite genres of movies - apocalypse, post-apocalyptic, dystopian society type movies.

Why am I attracted to this type of movie or song? I believe that there is hope to be found in these movies and songs. The old saying goes, "what doesn't kill you makes you stronger." Fibromyalgia tries daily to steal the life from me, almost as if I were in a post-apocalyptic world of pain and chaos. The symptoms of my fibro are just varied enough to sometimes give me hope, the proverbial light at the end of the tunnel.

I do have some good days, days where I am reminded of what is was like before I had fibromyalgia. Days before every fiber of my being ached with stabbing pains and sleep was not elusive. For every good day, I have two bad days. But the good days, give me a glimmer of hope, a melody of a possible miracle. Could I possibly have two days in a row without pain? Maybe three? A week? A month? Maybe be healed?

I have seen enough end-of-the-world movies to know that one doesn't miraculously return to the pre-apocalyptic life. My fibromyalgia is not miraculously going to disappear. But many times in the movies, the folks work together to build a future that is good, that is better than the bad days.

Please join me in creating a community of people with fibromyalgia, auto-immune diseases, or chronic pain who are free enough to speak of the dark side, hopeful enough to acknowledge the good side, and smart enough to Hang On Tight.