The Chronic Pain Chronicles, Part 4: Fibromyalgia

Photo by Žygimantas Dukauskas on Unsplash

Fibromyalgia.  It's called a disorder, it's called a condition but the musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues can be debilitating. In my opinion, it's not categorized as a disease because no one really understands the actual cause. Fibromyalgia seems to be a myriad of symptoms that mimic other disorders and there is no test or lab results that can determine it. There is only the process of a doctor administering pressure to 18 various points in your body and if you feel pain in 11 of those points, it's determined that you have fibromyalgia. Yep...that's it. That's all. Your primary care physician and your rheumatologist will probably prescribe to you the same pain meds and muscle relaxers. But I guess I shouldn't really gloss over that since the medical society used to think this was only a woman's issue and it was possibly her imagination or emotional instability...but that's a WHOLE other vlog.

So, it's the early 2000s and now I've entered the world of chronic pain. EVERY...SINGLE...DAY. 

I was working for Big Pharma when my former employer burst on the scene with a new medication for the treatment of Fibromyalgia. I have to admit, I had never known about it and when I did, I became a part of the "Is it real or is it imagined?" crowd. Sad...and true. I learned about the new med (as a dutiful employee would) but worried more about if our company stock prices would increase because of it.

I was already intimately acquainted with lower back pain and now there's pain in weird random places in my body. Was I coming down with a cold or flu? Was it fatigue? Was I getting enough rest? Did I need to do yoga or work out more? I made an appointment with my PCP because I wanted to have blood work done. I started thinking that it was possibly a deficiency of some sort. Unbeknown to me, my PCP started touching parts of my body and it hurt. It felt as if she was touching me in places where there had to have been a bruise...but there were no bruises. "You have fibromyalgia.", she said. My first thought, "You've got to be kidding me.", my second thought, "Ain't nobody got time for that!" And then I was prescribed the very medication that my employer (at that time) manufactured. I took the meds as prescribed, didn't notice a thing and stopped on my own. The 800mg tablets of Ibuprofen that I was taking 3 times a day was keeping me working but I felt like if I kept this up, my liver would shut down before its time.

Women are warriors of pain...plain and simple. Because of our biology, we are destined to experience it in our lives. A woman is going to experience it monthly or during childbirth. Blessed (and rare)is the woman who has experienced neither. My Mother had 7 children (6 survived) and she would often say that she didn't have time for pain. Small children don't understand when the Mother is unwell or in pain, they are only concerned with what they are accustomed to being provided by the Mother. For that reason, my Mother (who is an octogenarian) said she never experienced menopause. She thinks she was too busy with life and kids to have even figured out what was happening to her or when it was happening to her. So, when women start talking about the trials of menopause, my Mother's reply is usually, "Can't relate.".

You never think that you'd become accustomed to pain, but I think I did...or have. Those same pain points (when touched) feel like bruises, my memory is a joke and I never know how I'll feel from day to day. No one should have to live with pain, but I was becoming accustomed to it...and some days I somehow functioned through it. Years later, I experienced pain I could not function through...and it almost cost me my life.

To be continued.

The Chronic Pain Chronicles, Part 3: The Year Was 2005

2005 was a crazy year, but the summer was the craziest of all. 

I started 2005 in the midst of healing from a left tibial tendon reconstruction that was done in November 2004. I had been in a walking cast for a couple of months and still had to wear it for the next 3 or 4. Is this what I get for doing water aerobics? Yes, I tore my tendon while doing water aerobics. I don't think this is a normal thing. People don't go around tearing tendons while doing water aerobics, right? But the burning sensation in my left foot let me know that something was really, really wrong. 

I initially went to a podiatrist who prescribed an orthotic. This was one of those old school, hard plastic orthotics that made me feel like I was 80 years old. The orthotic hurt just as much as the pain in my foot and when I complained to the podiatrist, he told me that it just needed to be adjusted. To get it adjusted, I had to go to this "mom-and-pop" shop of a place on the far side of town to a little old man who used an old orthopedic sanding machine. I ended up going to this old man two times and the orthotic was still hurting my feet. Finally, the podiatrist recommended I go to an orthopaedist.

The orthopaedist took one look at my foot and instantly knew it was a torn tendon and knew what surgery it would take to fix it. This came as a surprise to me because surgery was the last thing I thought I would have to do to cure this pain. The surgery went as planned but the recovery was painful and took forever.  Tendons don't have a blood supply, so they take a long time to heal. I was told it could take up to 3 years to fully heal. In the meantime, I had to learn how to maneuver life around a walking cast. I really found no serious disadvantages with the walking cast other than the fact that it was hot. Since it was on my left foot, I could still drive and go about life as usual.

Life as usual for me meant that I was still working my normal job as a corporate trainer. Occasionally this required me to fly to different destinations in and out of the United States, so I made sure to request gate-to-gate assistance at the time my ticket was booked. All travel went well until that ONE time I had to catch a connecting flight out of Miami International Airport. My incoming flight was a little late, but I thought I'd be okay since I would have assistance waiting for me a the gate. I'd never been to MIA before, so I assumed it would be one of those mega golf carts like the other places. Waiting for me at the gate was a frail, little old man with a wheelchair small enough for a child. (Okay, so it wasn't child size but it was small.) I looked at him and he looked at me and we both knew we were in trouble. I squeezed my big butt in that chair, he struggled to push and off we went. I looked at my watch. I knew my other flight was already boarding when I got off the first plane. The old man's breathing became labored. I volunteered to just walk but he said it was okay. I think he fatigued before we got to the gate. He pushed me to the side and said he was going to get help. When he disappeared, I made a break for it. I took off as fast as my walking boot could go. I was close to the gate and heard, "Last call for passenger....". Oh, no! That's me! The gate is in view and I'm frantically waving my arm attempting to let the flight attendant know that I'm here. I'm hoping she'll see my walking cast and have pity on me. I'm finally close enough for her to hear me shout, "Here I am!". To my surprise, she starts scolding me, "Where have you been? The flight was about to leave!" (As if I was shopping or something.) As I'm walking down the corridor to the plane, "Hurry up!" she says. She bangs on the door of the plan, the door unlocks and opens. As I'm limping down the aisle, she proceeds to push me along. Did she not notice I had on a walking cast?!? Everything in me wanted to just snap on her but I didn't want a whole plane full of people madder than they already were (because they had to wait on me) and I was desperate to go home. I arrive at my window seat only to find someone else sitting in it. When I addressed the woman sitting comfortably in my seat reading a book, she curtly replied, "You can have my seat right there." To that the pushy flight attendant said, "Just sit." and so I sat. I was too tired to be mad. My energy was zapped, but the reason why that woman was in my seat was that the seat next to her assigned seat was a beautiful baby girl with blue eyes. So, I sit in an aisle seat where my walking boot had no choice but to stick out a little and get bumped by other people walking down the aisle and the refreshment cart.

It was the end of February 2005, I was walking on a sidewalk talking to a fellow church member when suddenly I fell. The weird thing about this fall is that I never remember tripping over anything or losing my balance. I landed in the grass. I remember thinking it was a soft landing but at the same time, I thought I heard a noise. My fall was so quiet that the person I was walking beside was still walking and talking and didn't even know I'd fallen. When he realized I'd fallen and asked if I was okay, the pain suddenly hit and I said no. The noise I heard was my bone. An ambulance ride to the ER and I find out that I'd fractured my right tibia and broken my right ankle. Back to the orthopaedist and back to surgery I go. After surgery, I have temporary screws and rods in my leg that will have to be taken out in 8 weeks. Imagine...I have a walking boot on my left leg and a cast on my right. It was almost comical. Almost.

Because I had a desk job, I was told I could go back to work in 6 weeks. My husband rented a scooter for me because where I worked is a huge place with multiple buildings and multiple locations. I forgot to mention that during all this time, I was finishing the college degree that was abruptly halted by the drunk driver in Chronicle, Part 1 and was graduating in April. I thought about not going to graduation but I went, scooter and all. The University staff was willing to accommodate me, so I wouldn't have to get off of the scooter, but I wanted to "walk" across the stage. I parked the scooter at one end of the stage (a staff person moved it to the opposite end for me), I hobbled up with stairs, teetered (literally) across the stage, received my diploma, shook the University President's hand, teetered across the other half of the stage, hobbled down the other set of stairs, hopped onto my scooter and scooted out the door.

First I must say that I have the most amazing husband. For 8 weeks, he loaded my scooter and took me back and forth to work. I have to admit that I had fun scooting around my place of employment, scaring some and terrorizing others. Everyone knew where I was at all times because you could always hear me coming and going.

I had the second surgery in June 2005 to remove the screws, returned the scooter and all was back to normal...for now.

The Chronic Pain Chronicles, Part 1: In The Beginning

I long for my "normal" life, like...working, shopping, visiting friends, hosting dinner parties, eating out at a restaurant, short weekend trips or weeklong vacations. Nope. No more of that for me. Being outside is like a war zone.

Chronic pain is a "mutha". Anyone that suffers from it can tell you their own tales of daily pain...and I'm no different. My chronic pain comes in multiple ways. It's a laundry list of unimaginable issues that I don't even like to talk about, but I'm starting to. I'm going to start talking about it because I've sat long enough thinking I am the only person going through this hellish stuff. Facebook has its pros and cons but if it wasn't for a chronic migraine support group that I decided to become a part of, I would have been thinking I was experiencing this "stuff" all by myself. I came to find out that there were over 10,000 people that have been experiencing the same things that I have been experiencing. Often times while reading the post, I find myself saying, "Wow! I'm not the only one who has experienced that." or, "I thought I was crazy but I guess I'm not by myself."

I can't say I've heard this anywhere but it almost feels like "pain begets pain"...especially in my case. The first consistent pain I can remember was menstrual pain. It was SO intense, it made me hate being a girl. People born male that feel or identify as a female need to feel the pain of menstrual cramps and childbirth and then tell me what if they feel the same way. I think they will come to the conclusion that they want the "pretty" (part of being a female), not the pain (of being a female). I've never been fortunate enough to have birthed a child into this world and when I see some birthing videos and the pain involved, I'm kinda glad I never have.

My menstrual pain was so intense that I was guaranteed to miss at least one day of school or work per month. Throughout all of my years of working, I don't know if I ever had a supervisor that caught on to that pattern. If they did, they never told me. My cramps always came in with a bang. There was nothing subtle about them and I think that was the most crippling. There was always one day in the beginning that felt like all the muscles in my abs were being twisted and it always had me doubled over, reaching for pain meds, and a heating pad. It literally hurt to walk upright, so I'd have to stay in bed ALL day.

In 1990, I was a sophomore in college. One of my weekly habits was going to my sister's house to eat. She was rearing two sets of twins, had a husband that was an avid hunter and fisherman and a great cook to boot, so there was ALWAYS something to eat at her house. After eating my fill, I was on my way back home when suddenly, while in the middle of an intersection, an oncoming car drop through a red light and hit the driver's side door of my car. If it weren't for the fact that I was driving an army green, 1970 Ford Torino with non-functional seat belts, I would have been severely injured. That car was nicknamed "The Tank" for a reason. Upon impact, I literally slid to the passenger side of the car. Being dazed by the impact, a passerby, helped me get out of the car. The driver that hit me almost kept going, but some people that witnessed the accident started yelling at him and I think he stopped out of fear. The driver was drunk. The breathalizer tested at twice the legal limit and the driver claimed that he'd only had a few bears while at the State Fair. The drunk driver was driven to lockup and my sister drove me to the ER. The hospital gave me the normal pain meds, instructions to rest and I was told I'd be in pain from the impact for a day or two. Little did I know that I wouldn't be able to go back to college fulltime and that accident was the beginning of a lifetime of back pain.

Chronic Pain Chronicles continued in Part 2