Fibromyalgia is poorly understood by the doctors, much less the average layperson. Because chronic pain with no identifiable cause is one of the symptoms of this disorder, it makes it especially difficult for patients, and, if we’re being fair, doctors, to suss out the difference between Fibromyalgia pain and pain with another origin. This can be a very dangerous situation, and causes confusion when it comes to figuring out when it’s important to seek help for a new pain, and how to advocate for yourself in a way that doctors will actually listen.
Fibromyalgia pain is the culmination of several factors in the body. Nerves that are sending pain signals when there is no cause to, brain receptors that receive pain signals too readily, and a reduction of serotonin receptors to receive the happy hormones that make us all feel ‘normal,’ or even good, all contribute to sensations of pain that shouldn’t be there. So when a new, undiagnosed symptom pops up, patients of FM and doctors alike are often dismissive.
As FM patients, most of us are pretty good at recognizing when there is really something wrong, but I’ll give you an example. For about a month, I had intense pain and a feeling of ‘fullness’ in the area of my liver, and on the left side of my chest, where the pancreas hangs out in the body. I dealt with it the best I could – I could only sleep if I put pillows under my left side, as without them, it literally felt like my liver was ‘hanging’ or being pulled to the left. I couldn’t sleep on my right at all, as the right side of my lower chest was too sensitive. After struggling with this for over a month, I went in to the ER expecting them to find something. After an X-ray, and an ultrasound the next day, the doctor gave me a ‘you’re crazy’ look, said “We don’t prescribe painkillers here,” and said that there was absolutely nothing wrong. I was confounded. The pulling sensation on my right, the intense pain, the inability to sleep without a myriad of pillows arranged just so, were all caused by…nothing. I was absolutely sure they were going to find something. But nothing. Keep in mind this has never happened before, or since, but it did go on for a grand total of 3 months, leaving me wondering – what’s next?
In my case, I guess it really was nothing, but what if it was? What if I went in to be checked out for a new pain, and a doctor dismissed me without at least ordering some tests? This is what many of us with Fibromyalgia face every day. Doctors don’t take us seriously when it comes to new pain, and then leave us hanging without a solution. At some point, everybody gets sick, so why won’t doctors take it seriously enough to follow through on complaints from FM patients the way they would with any other patient? And am I sure that the doctor I saw really did everything she could to try to explain my pain? What if she actually missed something?
Living with chronic pain can cause us, as patients, to become more complacent than the average person about new pains. We are used to sucking it up and moving on, coping with it the best we can. But it’s so important to get new pains checked out. It could be something much more serious than just another FM pain. It’s even harder for doctors to figure out whether our newest complaint is FM related or whether there is really something else going on, and many FM patients have complained that their doctors, or ER doctors, don’t take them seriously, view them as opioid-seekers, attention-seekers, or worse: fakers.
I’ll give you a better example. Before I was diagnosed with FM, my gallbladder was causing me trouble, around my early twenties. My surgery was put off over and over again until I weighed just 94 pounds. I was working full-time, had a young child at home, and was finding it difficult to function. I finally went in for the surgery, and was supposed to be sent home the next day, however, when I awoke, I was having a great deal of difficulty breathing. I thought I was going to die. I couldn’t lay down, I had to sit straight up. I remember the doctor staring at me from the foot of the bed with a nurse, and saying “you’re malingering. You should be going home today.” I couldn’t even respond. They left me, and then an angry and abrupt nurse came back and said “I’m doing some bloodwork then you’re going home.” She took my blood, then insisted that I was going to go to the bathroom on my own. I could barely move. She roughly heaved me to my feet, and the next thing I knew, I was on a gurney being rushed into surgery. The surgeon had nicked the main bile duct in my liver, and I was bleeding internally, which was crushing my lungs. They did another surgery to repair the damage and had to give me umpteen units of blood to replace what I’d lost. After that, the doctor and nurses were ever-so-nice. I didn’t even want to talk to them. I was furious, scared, upset, and just wanted to go home. I also had a fractured elbow from falling when the nurse tried to force me to walk to the bathroom.
I often wonder what would have happened if I had fibromyalgia when all of this transpired. I wonder whether I really have Irritable Bowel Syndrome, or whether, like my son, I actually have Gastroparesis, because they never did any testing aside from ‘elimination testing’ – a scope to see if I had Colitis or Crohn’s, and in the absence of either, it was declared ‘IBS.’ And that testing was even before my diagnosis of Fibromyalgia.
I’m now being tested for Hashimoto’s disease, which runs in my family as I’ve just found out. Sharing similar symptoms to Fibromyalgia, Hashimoto’s will kill your thyroid gland, cause muscle and joint pain, and other symptoms. If my mother and sister hadn’t tested positive, nobody would ever have looked further than Fibromyalgia.
Are you fed up with doctors who don’t take you seriously because of another chronic pain diagnosis? Do you take your own symptoms seriously, or have you, like me, become used to treating your own pain because you’ve learned that nobody else will? I’d love to hear about your experiences in the comments below; we need doctors to listen, but before they will listen, we need to learn to fight for the attention that our medical problems so richly deserve.