Transforming a PowerLESS Patient into a PowerFUL Patient

Fibromyalgia patients are routinely and unjustly labeled as attention seekers, opioid addicts, or just plain lazy people. Despite the various research studies proving the validity of fibromyalgia, there is still speculation as to the ‘realness’ of this vastly misunderstood diagnosis. Even medical providers are guilty of having this idea of their patients living with fibromyalgia and chronic pain.

This stigma damages us more than the accusers realize. It damages us mentally, which in turn affects us physically. It leaves us feeling powerless and utterly hopeless both as people and as patients. It doesn’t have to be that way. There IS a way to regain your power and transform from a powerless patient into a powerful patient. Here’s my personal story and how you can do the same.

This article first appeared in The Fibromyalgia Magazine in March 2019.

Sick Again

As I watch the sun warm the earth with the morning rays of a new April day, a single tear silently goes down my cheek. I think, “So much beauty in the world this morning, and I’m stuck in bed. Again today. How did I get to this point?” 

I try in vain to get up, but I fail miserably. Willing my body to move its limbs in an effort to simply walk to the bathroom has become an arduous task that overwhelms me just to think about. Who knew such an easy task as walking to the bathroom could be taken for granted?

In the previous week, my limbs had become miserably weak. A tingling was felt most of each day in my fingers, hands, toes, and feet. It felt like twenty-pound weights were strapped to my limbs to keep me from moving. My husband, Tim, and I had been racking our brains, thinking of the possible causes of this medical mystery that rendered me plagued with fatigue, weakness, rapid heartbeat, and relentless bouts of anxiety attacks.

Culprit #1: MSG

Yes, I was scared and uncertain of what was to come of me, but my husband felt a different kind of fear and uncertainty. Despite his valiant efforts at caring for me and keeping me as comfortable as possible, I was getting worse. His days were spent digging through countless articles to get to the root of my issue.

Tim eventually discovered one of the causes of my failing health and the key reason for my weakened state. Monosodium glutamate, or as it’s more commonly recognized – MSG. This chemical was responsible for my new symptoms, and within minutes of consuming it, I would lose the strength in my body and crumble like a ragdoll. For a body with fibromyalgia, it is similar to consuming poison.

Known side effects of MSG are headaches, sweating, facial tightness, numbness, tingling, rapid heartbeat, chest pain, nausea, and weakness. All of these symptoms I was experiencing 24 hours a day for nearly two weeks. An average body doesn’t have such a drastic reaction to MSG; however, someone living with fibromyalgia can have various reactions ranging from mild to severe.

Culprit #2: Lump in the Abdomen

In addition to the MSG reaction, I had stomach cramps, alternating stages of constipation and diarrhea, bloating that made my stomach twice as big as usual, large amounts of gas, itchy skin, painful joints, insomnia, loss of appetite, extreme fatigue, increased episodes of depression, frequent attacks of anxiety, total apathy, and weight loss. 

Once the MSG was discovered and immediately eliminated from my diet, I could focus on the remaining symptoms. The symptoms of weakness, numbness, tingling, chest pain, and nausea were resolved, but I still had several more to decipher. I had to decipher what was causing them or if there were multiple causes. Either way, we were determined to get to the bottom of it.

Around the time of the MSG reaction, I felt a large lump in my abdomen. It was painful and moved around my entire abdomen. After numerous imaging scans, several different doctors could not find the source of the lump and attributed it to overactive bowels. To this day, the mass remains in my stomach and causes pains occasionally. 

A Multitude of Ailments

Over the following ten months, I experienced pneumonia, glutamate sensitivity, Candida overgrowth, parasitic infections, thyroid nodules, a lump in my throat causing difficulty swallowing and talking, histamine intolerances, GERD, constant stomach upset, and a liver overloaded with toxins. The multitude of ailments, coupled with doctors refusing to help and downright dismissing me, resulted in daily anxiety attacks and deep depression. 

Doctors repeatedly told me there was nothing wrong because their array of tests revealed nothing. With nothing to show for my illness aside from physical symptoms, which could be dismissed as acid reflux, IBS, or some other general diagnosis, I turned inward and blamed myself. It was difficult for me to discern between fact and fiction. What were the actual medical causes?  What symptoms were fabricated by my brain?  

Fibromyalgia Affects the Entire Family

Despite the plethora of medical ailments and experiencing many lows, our family was relatively unscathed. We have grown closer, and we have learned from this ongoing medical anomaly. Their changes are noticed in how they help in the kitchen, ask if I need anything, or give each other grace when needed. Fibromyalgia does have a way of affecting everyone in the family, and not always in a negative sense. We can learn from it and grow even when its weight pulls us down.

I’ve had my way of thinking changed drastically in the last year. For one, I’ve come to realize the impact my illness has on my husband. We’ve had flares in my illness over the years, but he hasn’t been left to solely care for the kids and me to this extent for this length of time. I’ve seen him juggle work, house chores, five kids, and a sick wife for months and never complain. He has taken it with grace, tenderness, and dedication and has given me a more profound love, admiration, and respect for him. It has made me fall in love with him all over again.

Transforming from a PowerLESS Patient into a PowerFUL Patient

The other change is transforming from a powerless patient to a powerful patient. I’m tired of speaking and not being heard by those who can help me. Of being seen as a drug seeker when experiencing debilitating pain and suffering. The lack of understanding of this illness only drives a giant wedge between patients and their providers and loved ones. I, and many others like me, are driven into isolation and depression when we are ignored and discarded by our physicians, friends, and family.

The constant hum by those living with fibromyalgia of not being heard or understood by others is too loud to ignore. From the onset of my symptoms in 2006 to today, thirteen years later, little has changed in how we are viewed; I understand because I’ve lived it more times than I care to count. It is devastating, discouraging, and damaging. Healing cannot begin until the fibromyalgia patient feels he or she is indeed heard, understood, and believed.

Over the last year, I’ve been mocked, minimized, and dismissed by an array of providers because of fibromyalgia. During one of many trips to the emergency room, a physician read my chart and, upon reading the word ‘fibromyalgia,’ asked me which narcotic I was seeking. Later, during the visit, he questioned me on knowing the difference between fibromyalgia and ‘true’ medical conditions. 

Don’t be the Hypocrite

Based on our experiences like these, we assume each person we encounter will not understand or are unwilling to understand, the illness and its effect on our lives. Because we are poorly treated by the medical community and our loved ones, we sometimes develop resentment towards outsiders and erect a wall of protection against this discrimination. It’s self-preservation, and understandably so. However, these actions can lead to defensiveness; subsequently, this penchant for defense leads us to become the ones we wish to avoid. 

We boldly call out, “Hear us! Believe us! Understand us!” but are we genuinely giving others a chance for us to be heard? This wall we build for protection can interfere with communicating with others and hinder them from understanding. This wall of one-way communication unknowingly excludes potential help from that one person willing to listen, believe, understand, and help us. Before we give an outsider a chance to express their feelings or thoughts about fibromyalgia, we immediately dismiss them. We quickly discount them before they discount us. 

When do we stop telling others they do not understand fibromyalgia and start telling them how to understand and help us? When do we learn to become better patients just as we ask for better providers? This is where we grow from powerless patients to powerful patients. 

Give Your Provider a Chance

Give your provider a chance to understand you. Enter each appointment with an open mind and fully listen. If you feel rushed in any way, express that concern at the moment it is happening rather than waiting for the moment to pass. If your appointment is due to new symptoms not related to fibromyalgia and it seems as though your concerns are being dismissed because of fibromyalgia, explain why you disagree and how the symptoms are impacting your daily tasks and quality of life. Also, if you feel as though your provider does not believe in fibromyalgia or has said it outright, seek a new provider.

Take articles from credible sources as evidence of your concerns, and explain what you want to explore. If you still feel as though you are being dismissed, mocked, or belittled, state that you would like it documented in your medical record of being refused proper medical treatment with specifics to what you have asked and are being denied. Try to remain calm at all times. I know this is difficult – I’ve been there – but they will listen more when you are relaxed and will get better results.

For loved ones, explain your illness in small doses as the need arises based on present circumstances or canceling plans. Encourage them to be involved with your illness by listing ways to help in small and big ways, whether they live near or far. Instead of making them feel in the dark about your illness, use love, patience, and humor to include them in it.

We must not let our diagnosis define us. We must not let others trap us in a state of turmoil, rendering us powerless and a victim of diagnosis. We can and will rise above it by being the utmost example of change and willingness to learn from one another as patients and providers.