When I Finally Demanded Answers From My Doctors


It all began by walking into a room – walking into a room and not being able to recall why I was there. I had alarms on my phone as reminders if I remembered to set the alarm at all. There were sticky notes with usernames and passwords in my office because I could not remember.
I wasn’t even 30 and my mind was betraying me, one memory at a time. It felt like a haze and beyond the fog were my answers, but I could not find my way out of this misty prison my brain had built.

Then, I noticed the pins and needles and the incessant sensation that my hands and feet were asleep. My joints popped and cracked whenever I got out of bed. I could barely sleep. If it was not the inexplicable pain all over my body, it was the pool of sweat I was drowning in every night from the hot flashes.

 

I was exhausted all the time. It was not relieved by sleep or rest. It was a fatigue that emanated from within me; I am not good at explaining it. I went to my psychiatrist, my primary care physician, a neurologist, an endocrinologist and a rheumatologist. At first they ruled out my pre-existing conditions. Then, they wanted to blame my mental illness. At first, I did not question my doctors. However, no amount of sleep, yoga or prescriptions relieved the pain, exhaustion and severe inability to remember most things.

Frustrated with the arrogance the medical world can occasionally display, I demanded answers. They were my doctors and I was their patient and wasn’t it their goal to help me? Even as I write this, I need to take breaks because my wrist locks up in pain. After the demands I made in desperation, my rheumatologist diagnosed me with fibromyalgia. I am on her treatment plan and while I have a long road ahead of me, I have begun to find hope.

The pain and fog of my fibromyalgia is quite real, but my frustration is as well. According to the National Fibromyalgia & Chronic Pain Association, it can take up to five years for a patient to be diagnosed. Since there are no definitive tests for it, doctors may come to the conclusion that the patient’s pain and symptoms are not real. Since I had such severe memory problems, I started to bring my spouse to my appointments. They would ask the questions I had forgotten and pressed for the tests I was too scared to ask for. They were my advocate and I am convinced if I did not have them in my corner, I would not have received the proper diagnosis.

You live in your body and mind each day. You deserve your symptoms to be taken seriously. It’s your health; take it back.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via  -Vologina-.


Find this story helpful? Share it with someone you care about.


Related to Fibromyalgia

double exposure photo of a woman wearing a hat and mountains and sky

A Note to Self for the Days When Fibromyalgia Makes Me Feel Guilty

Fibromyalgia and other chronic pain illnesses can affect us in lots of different ways, but one thing I hear lots of people say is they feel guilty. Guilty even though they’ve done nothing wrong and can’t control what their illness does to their bodies and their minds. I feel this a lot too and decided [...]
stethoscope on medical records

Fibromyalgia Patients Shouldn't Blame Their Doctors If a Medication Doesn't Work

With no one-size-fits-all cure or painkilling regime for fibromyalgia, it is easy to become frustrated with, well, pretty much everything. While I am probably safe in saying that we as individuals who live with chronic conditions have taken these frustrations out on those closest to us at one time or another, I have noticed a [...]
lady gaga holding rosary beads

Lady Gaga Responds to People Who Think She's 'Making Up' Her Chronic Pain

Just four days after canceling a performance at Rock in Rio in Brazil due to chronic pain caused by fibromyalgia, Lady Gaga announced that she is also postponing the six-week European leg of her Joanne World Tour. In a lengthy Twitter post last night, she responded to those who have questioned her illness and the effect it’s had [...]
woman hiding her face behind a bouquet of purple flowers

The Parts of My Illness I Hide From the World

I am one of the many faces of invisible illness. The person you see is the person I want you to see. You see a woman with a nursing career who is competent at her job and completes what needs to be done. I see a defeated woman who has settled for a job she [...]