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.
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Thinkstock photo via -Vologina-.