What is the FM/a test?
To recap: "Our immune system uses signals. These signals require receptors to transmit and receive messages. These receptors come in sets, one of which are cytokines. We have these cytokine receptors throughout our entire body, and they allow discussion between the immune system and the nervous system."
The test was developed by researchers at the University of Illinois College of Medicine Chicago. It is currently available to people in most states, Canada, Europe, Turkey, Mexico, Central and South America, the Caribbean, Hong Kong, Australia, and New Zealand. The tests are analyzed in California.
I do not know how much the test costs, but it is said that most insurance providers, granted you have one, will cover at least a portion. You need to get a doctor's request for the test, but those are basically the only hoops standing in the way of what the makers say is a "quick, accurate, and definitive" test for fibro. You do not need a current diagnosis of fibromyalgia to qualify. Your specimen will be scored between 0-100 with 50.0 being the benchmark for a fibromyalgia diagnosis.
On Friday, I have an appointment with my family physician to discuss current medications and the test results from the gastrointestinal issue that landed me in the ER almost two weeks ago now (I think, time is weird re: COVID-19). At this appointment, I will ask about the FM/a test and report back on what I learn — including if I can take the test. With a blood test, we are equipped with the 'proof' people, including ourselves, have been lacking during diagnosis and to validate our experience. While we should not need to prove anything to anyone, it certainly helps them understand better if we do... With this, we can confidently refute the asinine claim this is "all in our heads," or that fibro is somehow a catch-all diagnosis. This gives us the credibility our community has been seriously lacking. It also means a direct route to knowing whether you have fibro or not. In many cases, patients have to endure years of tests, assessments, and assumptions before finding their diagnosis. At this time, we are told it is likely fibromyalgia based upon what it is definitely not. This kind of process of elimination can be extremely stressful. For me, the brief version went something like this: undiagnosed digestive issues that comprised quality of life as a kid, growing pains, fainting spells, anemia, depression, a colonoscopy...years later, random lumps, food sensitivities, breathing issues, weakness, flu-like symptoms, muscle spasms and cramps, shoulder, neck, and back pain, foot spasms, pins and needles, menstrual issues, stabbing pains...I could go on...but the blood work always read fine. When I moved across country in my early 20s, my health deteriorated further into red, hot spots and knee and wrist pains...I was finally sent to a specialist on account that we have a serious history of arthritis in the family and I had moved to a big enough city that had the kind of support and expertise required for this.
I remember waiting to hear if it was arthritis (no, but I do have the marker, so that became a different convo). Lupus. I remember my mom being so happy it wasn't lupus, and me feeling so defeated. I remember 11/18 trigger points being marked. I remember MRIs and Xrays and countless vials of blood taken. I remember that after so many years and so many perfect blood works, I did not want to go the appointment that gave me my diagnosis. My mom encouraged me to go anyway - knowledge is power.
"In the realm of fibromyalgia syndrome..." this is what the report reads.
Not exactly the definitive answer I was hoping for. I left the office confused. So, do I have fibromyalgia? I have heard the word before as my grandmother and father both have been diagnosed with it...but I knew nothing. Our family always focused on that which can be seen, or in our case, inflammation of joints. I did not have signs of that or any deterioration, so I felt like I did not have anything worthy of mention.
It took too many flares and, actually, a graduate course on Feminism and Disability and joining Fibro groups on Facebook for me to start accepting the diagnosis. When I feel well, it becomes too easy to go back to those small words...in the realm of...and it can begin the doubt and self-stigma cycle all over again. Oh yeah, and try telling your friends and family you 'likely' have this syndrome they likely have never heard of and you got diagnosed on account of ruling everything else out...
Eventually, I stopped discussing it despite still grappling with what it all meant. Instead of saying, "I'm sorry I cannot make it tonight because #fibro," I would either force myself to go, ditch out early, and still pay for it, or I would say something totally BS. This very thing prevented me from being open, honest, and connecting to people in a real, human way.
What if it wasn't like this? What if we didn't need to doubt anymore?
The only thing is that doubt is double-edged. The test is relatively new and while it claims accuracy, I worry nonetheless about how it can be used against us...but then again maybe that's the anxiety in me talking. But, for example, if someone was to get a score of 51 compared to, say, 79...what does that mean? They have more fibro than the other? With fibro being such a fluctuating syndrome, does that mean our cytokines fluctuate, too? Will they measure differently during a flare compared to a 'good' day? Will disability plans be set based on the 50.0 and above and could this be used as a measure of at this number, you 'should still be able to...' But maybe this is what accounts for the vast range of experiences with patients with fibro...maybe these cytokines are the only way we can create some visibility to an invisible illness... #thoughts I promise to get more answers and report back. -MP