Part 1:
This blog series is dedicated to sharing my journey with fibromyalgia over the last ten years, to share a piece of my story, offer the resources that were helpful for me and also bring support for those who may be in a similar situation. When I was diagnosed with fibromyalgia at the age of 23, there was not as many resources nor much understanding then as there is now for those having this condition so a lot of what I can do is share my personal experience, treatments available and my offerings as a Chinese Medicine Practitioner.
Each blog will focus on different themes that have come up during the past decade of navigating this chronic health condition. This entry will share a bit more about my journey to receiving the diagnosis.
A diagnosis of fibromyalgia is determined by what is called a diagnosis of exclusion which means that a diagnosis is reached through a process of eliminating all other potential conditions from the table. This could look like ruling out other conditions from performing various blood tests, urine samples, doing an MRI, conducting neurological exams, etc.
Along with ruling out other conditions to determine whether or not you have fibromyalgia, there currently is three criteria that is used to consider a diagnosis:
Utilizing two questionnaires to look at widespread pain (Widespread Pain Index) and symptom severity (Symptom Severity Score). The Widespread Pain Index (WPI) would need to be between 3-6 and the Symptom Severity Score (SSS) would need to have a score of 9.
The presence of the symptoms has been at a similar level for at least 3 months.
No demonstration of any other disorder that would otherwise explain the pain (diagnosis of exclusion)
For me, the process to get diagnosed took about four months after going through extensive blood and urine tests to determine whether or not I had lyme's disease or various autoimmune conditions. I also had an MRI done to rule out multiple sclerosis as it runs in my family and because I was failing all of the neurological exams at the clinic each time I saw a neurologist.
It was not until visiting many providers, specialists and had gone to the emergency room twice along with switching numerous medications that I was able to get into to see a Rheumotologist who finally was able to diagnose me with fibromyalgia. The layers of arriving at a diagnosis was so exhausting that when I finally was diagnosed and had a provider who did believe what I was experiencing symptom-wise that everything fell more into place and I was able to start the journey of figuring out a treatment plan that worked well for me.
My story of the way I arrived at my diagnosis is actually very common amongst many others who were diagnosed with fibromyalgia. For some, it took years to reach a diagnosis while others were diagnosed within a shorter time frame.
Although mine took four months to be diagnosed, it honestly felt like a lifetime as my body, mind and spirit were so depleted by the medication switches to emergency room visits to doctors not believing me to having to manage my body changing suddenly to also managing school and work at the same time. I almost was at a point that I had to quit my job and potentially drop-out of school because my condition was so severe. Luckily, my work allowed a huge shift in the way I worked and I was able to receive a lot of extensions in my schoolwork so I could pass my classes to have been able to graduate the following spring.
I hope this can shed some light on the process of getting a diagnosis of fibromyalgia along with tying in my personal story of how I got diagnosed. Below, I'll be sharing some links that I've found helpful in understanding the development of a fibromyalgia diagnosis.
In health,
Carolyn of Acknowledge Wellness LLC
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