One of the cruelest things about fibromyalgia is that the symptoms of fibromyalgia mock many diseases and disorders but are often invisible on tests. I have had MRI's, CT Scans, x-rays, ultrasounds, biopsies, blood panels, brain scans, EKG's and EEG's, nerve conduction tests, blood flow tests, endoscopes, colonoscopies, multitudes of eye tests, sleep tests, latency tests, I have been given retrograde amnesia twice (once unsuccessfully), surgery once, experienced just about every embarrassing, uncomfortable, painful or irritating test there is and almost always with the same depressing result.
With the exceptions of finding a positive ANA that indicates an autoimmune (what kind is still unknown, possibly lupus), A high CRP (an indication of chronic inflammation), extreme insomnia and excessive daytime sleepiness, scoliosis (already knew that), calcification on my ribs, vitamin deficiencies, gallstones (which they ignored for years) some cysts, a hernia, and a few nodes, hormone imbalances, and some weird readings here and there on blood work that basically add up to a big fat.... Um.
At first you are so relieved they are doing tests because, how could it not show you what's wrong? You anxiously await every result and even obsess over what it could be, you Google everything. I think that phase lasts for a while, even when the tests are unimaginably awful. You endure them; maybe even look forward to them because this test is the one that will explain it, it will be the one that will show everyone you aren't bonkers. That feeling passes though, at some point every test becomes a chore, and you start to feel a little less hope each time. Tests become commonplace, 18 vials of blood is nothing. You start to doubt they will ever find anything and go so far as to even welcome the thought of a terrible diagnosis just to find some explanation for the way you feel.
It's hard to feel optimistic about it all when you've been down that road a thousand times before and never found your way. Oh there are things that add up along the way, little bits here a there that indicate you aren't just making this shit up, but the big picture remains unclear.
I forget how scary it can be to hear something like, you might have cancer, Parkinson's, MS, heart disease or a brain tumor. I forget how scary the wait for results can be. Nothing phases me anymore. Last week I had another CT with contrast, and I'm scheduled for a mammogram and an ultrasound (even though I'm only 31) because they found a "node" In my breast and "nodules" on my thyroid and I've had chronically swollen lymph nodes for two years which have "no explanation," and are "nothing to be concerned about." That used to really bother me. Hearing there was something but that it was nothing. I suppose it still does in a way but what I have come to realize is that; unless they had a course of treatment -which they often don't anyway, it doesn't really affect the overall outcome. I am sick, have been for years, I haven't died and likely won't (and even though that might sound like a consolation, some days it is not.) My options are to try different treatments and hope they work, which has been minimally successful and sometimes results in worsening things, or learn to cope despite these things.
I am getting to a point where I'm not sure these tests are good anymore, they are expensive, invasive, not just for me but for everyone, and when they result in nothing I feel beat up for nothing. Admittedly, I still err on the side of caution and doctor recommendation but that time may be coming to an end. I'm tired of the tests, I'm tired in general and really how much damage are they doing all by themselves? I may get cancer trying to decide if I have cancer, that seems unwise.
I know that it's hard to know you are sick and lack the evidence to prove it, but I can't help but think that the final, see; I TOLD YOU would be way less satisfying than I imagine. I long for the day it's all on paper and without any doubt, but am I killing myself to make a point?
I think I will always fight for awareness, not just for us fibro's but for all those unfortunates with invisible disabilities. This particular part of the fight however, may not be good for anybody.
I have treatments that I am comfortable with, a medicine regimen that is helping me maintain, doctors and therapists that are working with me and a support network for the rest. I think I'm ok with that. I'm realistic about my goals and mostly I am in a stable place, I should be grateful for that and I am. It's more than some will ever experience and I know I am lucky, even when it's hard to see that silver- lining. It's easy to put away that fight when you're feeling better and pick it right back up again when you start feeling sick and because of the nature of our illness we run the risk of ignoring serious health concerns and writing them off as just another fibro symptom, but we also run the risk of becoming obsessed with answers we are not likely to get. So when is it ok to stop taking the tests, the meds, the referrals?
I am thankful for the fact that my doctors are willing to do the tests when so many people can't seem to get that much, but a decade of tests is probably more than enough. I'm not done looking for answers but maybe I need to modify my approach.