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Sharing my chronic illness story is not an easy task. If having multiple chronic conditions didn’t create enough complications, each diagnosis has had its own fair share of trials and tribulations.
Like my psoriatic arthritis diagnosis, I didn’t have to wait long before my doctor diagnosed me with fibromyalgia. Unfortunately, the joy of receiving a quick diagnosis was destroyed when it became the scapegoat for physicians who didn’t want to deal with another chronic disease.
Here is my fibromyalgia diagnosis story and the three devastating effects it has had on my chronic life.
Disclaimer: This blog post contains affiliate links. I may earn a small commission to fund my coffee-drinking habit if you use these links to make a purchase. You will not be charged extra, and you’ll keep me supplied with caffeine. It’s a win for everyone. I am not a medical professional, and nothing stated in this article should be mistaken for medical advice…
The Fibromyalgia Diagnosis Debate
As I stated earlier, receiving my diagnosis was easy. It wasn’t because my doctor was highly educated or experienced in treating this chronic condition that made it so easy to diagnose, but because I had waited until it reached a debilitating status before seeking medical intervention. For years I put up with my key complaints of fatigue and muscle and joint pain. I believed what I heard others say about people I knew with chronic illnesses. Like them, I would be perceived as lazy and a hypochondriac.
Finally, after the pain in my hands made me fear that rheumatoid arthritis was a possibility, I made an appointment. After a lot of bloodwork to rule out RA and many other chronic illnesses and scoring high on the fibromyalgia pain points, I was diagnosed in 2003.
A Fibromyalgia Diagnosis Is A Blessing And A Curse
My fibro diagnosis quickly became a blessing and a curse. On the one hand, my pain and exhaustion had an explanation. On the other, there was no cure and, at the time, no specific treatments. Sharing my diagnosis with friends and family created more issues. Most could not understand why my physician couldn’t provide a magic pill that would return me to “normal.” But that was nothing compared to the reactions of other and future physicians.
Although I was originally referred to a rheumatologist for fibromyalgia pain relief, he didn’t really seem interested in my diagnosis. In fact, he showed no interest in my case until he saw my toenails. It was then that he became giddy at the prospect of my having psoriatic arthritis.
It was my gynecologist’s reaction that surprised me the most. He looked me straight in the eye and boldly stated that it was not a real condition. As time went on, he wouldn’t be the only one to deny the reality of fibromyalgia. To make matters worse, he and many other doctors would later change their minds and use my diagnosis as a scapegoat to avoid dealing with unrelated and devastating health issues.
My Fibro Diagnosis Is A Scapegoat For Doctors
Seven months after my fibromyalgia diagnosis, I was diagnosed with endometriosis and ovarian cysts. This is another saga for another day. But, it is important to bring up in this post because it almost cost me my life.
Within months of the exploratory surgery that revealed a massive cyst and endometriosis, my pain returned. According to my gynecologist, the next step was a hysterectomy. Unfortunately, the pain returned soon after that surgery too. Assuming he did everything he could and that there was nothing left for him to address, he began blaming my abdominal pain on fibromyalgia. Being that abdominal pain is a fibro symptom, it was hard to argue that mine was different. But I did and would be proven right two years later.
Although not a terminal illness, #fibromyalgia will contribute to the cause of my death.
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It should not have taken two years to prove my point. Nor should it have reached the point of having my bowels strangled by adhesions before being taken seriously. But that is what happened. During those two years, twenty surgeons who did nothing more than open my chart and saw my fibromyalgia diagnosis refused to help me. Most blamed fibromyalgia, while others told me that I needed psychiatric care.
For the first time in my chronic life, fibromyalgia felt like a death sentence.
No End In Sight
You would think that fighting and managing fibromyalgia pain and symptoms would be the hardest part of my chronic life, but they are not.
Two of the most frustrating aspects of living with a fibromyalgia diagnosis are having doctors blame the pain and symptoms on depression and weight. It doesn’t matter that I wasn’t depressed before my diagnosis or that I was at the lowest weight of my adult life when diagnosed.
#Fibromyalgia, You do not “get it” until you GET IT!
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After a decade of failing to relieve pain or improve symptoms with pharmaceutical medications and with doctors suddenly not wanting to prescribe medications for pain, I felt forced to take matters into my own hands. For me, this meant following a natural and alternative care plan.
NOTE: I am not suggesting everyone do what I did. How you choose to treat your pain and symptoms is up to you! That is the beauty of medical freedom; patients have the right to choose how they treat their conditions.
Cannabis was the first to provide much-needed relief from unrelenting fibromyalgia pain and symptoms in 2013. Then four years later, the addition of PEMF therapy to my pain management plan improved my pain so much that fibromyalgia was no longer my worst chronic condition.
Unfortunately, eighteen years later and my fibromyalgia is still used against me. It is every doctor’s go-to excuse for not dealing with unrelated surgical errors made by leading surgeons or when my pain becomes too complicated to figure out.
Fibromyalgia is something I will battle for the rest of my life. And although not a terminal illness, it continues to be used against me when there are other issues at play; it will contribute to my death.
Related Reading: My Experience With Lyrica
It is too easy for some doctors to blame things on an illness we already have. Your story proves the point that we should trust our gut and push for more answers.
Way too easy…. if only pushing and advocating for ourselves didn’t have to come at the cost of our mental health.
I have lost count of how many times they have passed other illnesses off as MS. My GP says it’s the easy way out when they don’t know what’s causing it.
Ugh!!! And then by the time they do address the real issue, it has had time to progress. This angers me to no end. Hugs!!!
I was diagnosed with Fibro in 2019. In June this year I was diagnosed with Psoriatic Arthritis and prescribed medication for it. A lot of what were “Fibro” symptoms cleared up 2 months later.
I often questioned my fibro diagnosis in the beginning because of the same thing.. It shares or mimics symptoms from so many other illnesses. I would say welcome to the psoriatic and fibro club, but it isn’t really a club any of us want to be in. Hugs!!
Definitely not a club to volunteer for
Hugs 🙂