Overcoming Fibromyalgia: Finding Sanity in the Darkness

I know how you feel. I’ve been there. Frustration. Hopelessness. Never-ending aching pain that robs you of life’s essence itself. Endless doctor appointments. People confused by your daily ups and down. No one understands. No matter what you do, nothing ever changes.

Let me stop you right there. There is hope. I am proof of that.

Believe me, the answer’s not pretty. The recovery does’t happen over night. But I guarantee you there is a way to fight back and live a normal life.

Bob Marley said, “You never know how strong you are until being strong is the only choice you have.” He understood that every single one of us goes through this process at some time in our life. Most people learn what it’s like to live with chronic pain in their final act- pain leads to diagnosed disease leads to more pain that ends in a last breath. They find out too late what you already know, that life is precious and much too short. How lucky are we that we to learn this truth now so that we can live life to the fullest?

Every recovering sufferer has a pivotal moment in the depth of their fall where they start to climb out of the darkest. For me, this happened when I learn of my step-father’s passing. Pancreatic cancer is a vicious assassin that strikes quickly and without mercy. Now I am driving to drive to Northern California to be with my mother and, with the help of my sisters, figure out a thousand details.

It’s worse than I could have imagined. She has her own health problems to contend with, and it becomes clear that she isn’t able to take care of herself in her current condition.

I am overwhelmed. I am in pain and fighting chronic fatigue and headaches and nerve pain stabbing me with a thousand needles from within. But I have to dig deep and find the strength to be strong for her. I have no other choice but to suck it up and get through this.

It becomes clear that I need to bring my mother home with me, so we pack up what we can and head south. Half way through the nine hour drive, I receive for the second time in a week the phone call no one wants to receive. My half-brother from Oklahoma died that morning. Are you kidding? Really, God? Isn’t it enough that you’ve already stretched me to my breaking point? But I don’t break. The strange thing is the news only strengthens my resolve. I will grieve later. For now, I have no choice but to be strong.

How could I know this decision would be the turning point in my life?

“I never saw a wild thing feeling sorry for itself…,” D.H. Lawrence writes in his celebrated poem. How true his words ring in my heart. I spent years feeling sorry for myself, lost in a maze of negativity that sent me spiraling ever downward. Now that I have to be strong for someone else, I feel empowered. Something inside is coming back to life. I realize and accepted a single fact that ended up being the key to my freedom.

Ready for it?

Here it is in three parts. 1) I am sick. 2) I will always be sick. 3) Being sick is better than being dead.

The realization washes over me like a Protestant baptism.

I live in pain every day of my life. Sometime I crash. That’s okay. I make the most of the time that is given to me. I exercise. I eat right. I reduce stress and anxiety as much as possible.

What I want you to understand is how much control you have over your mind and how much control your mind has over your body.  Realize that pain is subject to the moment. I rarely remember how my pain felt yesterday. I only know how the pain feels now. I’ll deal with tomorrow’s pain later.

It’s not easy. I still stumble. I still fall. When attacked by a virus or exhausted from bout of insomnia,  I fall back into the habit of negative thinking. That’s when I practice positive self-talk. “You can make it…It can’t hurt any worse than this….Pain is a part of being alive.”

I’m over a year into my recovery. I’ve lost fifty pounds. I’ve been able to start coaching again. In short, I’ve been able to start living again.

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A Name for My Pain

It’s three in the morning and I’m sitting on the edge of my bed trying to talk myself out of going to the Emergency Room. I’ve been twice in the last two months. Shortness of breath. Pain in the chest radiating down the left arm and even down my leg to my pinky toe. My body aches like I have a hundred degree fever. I’m sweating. Am I having a panic attack? I don’t think so. I’ve seen others suffer through panic attacks and this isn’t like those uncontrollable episodes. It has to be my heart, but the EKG’s were negative before.

For two years I’ve battled headaches, numbness, tingling, dizziness, chronic fatigue and flu like symptoms. They don’t come and go like other seasonal colds. They start in the morning about ten a.m. and gradually worsen until I can do little but go home and collapse, exhausted on the couch. But I don’t give in. I can’t. I have to get up and go to volleyball practice. As a coach, I have responsibilities.

My memory begins to fail me. My brightest students know something is wrong with me. It takes a minute to find the answer when they ask a question. I know the answer. It’s in there, in the fog somewhere, but I can’t seem to recall the information. And names are becoming harder and harder to remember.

I’m losing friends. They don’t understand why I’m withdrawing. I don’t understand it either. I’m battling depression while doctors pass me around from one to another. I’m taking every test possible. I’m on my fifteenth different medication. This one is fun. It causes dreams so vivid they seem brushed with flowing rivers of florescent ink. I throw the pills away when the audio hallucinations begin.

Another medication. A manic phase and three thousand dollars spent on new bedroom furniture.

I suspect my coworkers think I’m faking, except for those I eat lunch with every day. My boss is definitely skeptical.

Thank God for my students. They make me laugh. They give me a reason to get up in the morning. Sometimes I want to stay in bed and wither away, but I get up for them.

Lupis. Negative. Multiple Sclerosis. Negative. MRI, Cat Scan, painful metal tube stuffed down my throat and into my stomach-all negative. They tell me it’s in my head and refer me to a psychiatrist.

More medications and horrible side-effects.

Writing is becoming difficult. Twenty minutes a day is all I can manage. But this is Stanford University, and I am almost done with my novel revisions. I can make it! It’s a flexible online program, after all, and I can work in the morning before I go to school.

Doctors discover I have Hemochromatosis. My body isn’t eliminating iron. I have sixteen times the normal limit. My blood is sludge. The treatment? Give a pint of blood every week for eight weeks until I’m anemic and lifeless. The pain continues.

A sleep study. Sleep Apnea. Is there any wonder? I’ve gained over eighty pounds.

They send me to the pain clinic where I see others just like me, and worse. One woman looks so miserable that my eyes moisten at the sight of her. Is that what I look like?

They call it Fibromyalgia. The symptoms include nerve pain, muscle pain, chronic fatigue, memory and mood problems. It all fits, but nothing is specific. I have a diagnosis of symptoms, but no root cause to treat.

The doctor gives me a permanent handicapped placard. It has come to this. I can hardly walk across the room without wanting to fall over.

Thank God for Linda. My dear friend, Linda! She is in my writing program and personally knows the best neurologist in San Diego. Would you believe this doctor actually calls me at home and spends an hour going over my history and symptoms? The next week I’m on my way to his office.

He repeats a test, ironically one of the first tests I ever had done.

That’s it!

The root cause of all my pain is a slipped disk and spinal stenosis, a narrowing of the nerve channels in the spine. My nerves are being pinched. Over time, exacerbated by contributing conditions, my fight-or-flight response has short-circuited. The resulting pain echoes through my nervous system and into my muscles, even my bones. The resulting Fibromyalgia pain is my body’s way of warning me that something is very, very wrong.

Unfortunately, there is no definitive cure. A cortisone shot helps alleviate the swelling in the spine. But it took years to get into this state. It might takes years to get out of it again, if ever. Still. It’s a very important first step in the right direction.

Yes. I went to the emergency room and an x-ray revealed a severe sinus infection. A week later, I was scheduled for surgery. But that’s another part of this story that unfortunately never ends.

(After five impossible years of learning to cope with chronic pain, Dr. Burnham is determined to live, teach, coach, and thrive in Southern California.)

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