“How long have you had fibromyalgia?”
Those were the first words the rheumatologist said when walking into the room for our first visit. I was taken aback, filled with confusion and excitement swirling together. I had never been diagnosed with fibro before. Did I actually find a doctor who believed me?
It’s been about five years since I started my medical journey. Well, that’s not quite true. I was a sickly child and have been in and out of doctors’ offices my whole life, but five years ago is when started seeing doctors to figure out why I was in pain all the time. Four years ago, I received my first diagnosis: endometriosis. For the next couple years, I focused on endo. I assumed that was the root of all of my pain. I went to doctor after doctor trying to find someone who would take me seriously. You see, I can’t take hormones due to terrible side effects and almost all the treatments for endo are hormone based. No one seemed to want to help with the pain that was preventing me from living my life. Finally, this past summer, I found a doctor willing to try experimental treatments and treat my pain.
However, about a year and a half ago, I realized that something else was wrong. The widespread pain throughout my limbs was not a part of endo and was definitely not normal. Feeling like I’d done the most intense workout of my life when my activities had been limited to walking a bit and sitting around didn’t make sense. So I started my journey to figure out what else was going wrong in my body. Doctor after doctor blew me off. My pain dismissed. I grew hopeless and stopped pursuing things.
In the meantime, Tumblr helped me to figure out the most likely possibilities. Through interacting with other spoonies, I learned about Ehlers Danlos Syndrome and realized that that may be the answer to why my joints pop and hurt. I learned more about fibromyalgia and saw myself in the symptoms presented. I learned coping tools and strategies to help myself live better whether or not the doctors would listen.
A couple months ago, I decided to restart my search for answers. My joints were subluxing daily and my pain was getting worse. I made an appointment with a PCP who had good reviews online. When I had my first appointment with her, I walked out excited. Not only had she really listened to me but she had made me appointments with specialists to start addressing everything. She also added a new med to my regimen as an experimental treatment for the pelvic floor dysfunction. For the first time in a long time, I felt listened to by a doctor and was hopeful.
Last night, I had my first appointment with the rheumatologist. After so long of not being believed, I had typed up my medical history and current symptoms to present to the doctor. When I gave it to the nurse, she seemed impressed and brought it back to the doctor whose first words to me stopped me in my tracks. I didn’t expect to be diagnosed with anything during that visit but here he was diagnosing me before we’d even talked. Working just from the list of symptoms (which were thoroughly described might I add), he was able to tell that I have fibro.
After asking how long I’ve had fibro and noting the confused looks on mine and my husband’s faces, he proceeded to tell me that if half of what I’d written down was true then I have fibro, though he would do a physical exam to confirm. We proceeded to go through the physical exam during which he touched all the tender points for fibro. For most of them, he didn’t even wait for a response, he just noted my facial reactions and body language and could tell that I was in pain, something I don’t think I’ve ever had a doctor do. As an autistic person, my reactions to pain tend to be different than non-autistic people’s reactions yet this doctor was able to tell I was in pain each time. I was astounded.
After confirming my fibro diagnosis, he turned to me and started talking about the hypermobility in my joints. He asked if I had a family history of hypermobility to which I responded that when I mentioned my concerns to my mother, her response was “oh everyone can do that” because apparently both she and my grandmother could do all of these things. He then asked if I had heard of Ehler’s Danlos Syndrome. I informed him that I had actually had my own suspicions about it. He proceeded to talk to me about the 11 different types at which point I corrected him that there are now only 3 and he took the correction well. He informed me that he could make a diagnosis of EDS based on symptomology but that he wants me to go for genetic testing to confirm which type I have. He even admitted that EDS is outside his area of expertise and he would prefer I see someone more familiar with it to make that diagnosis. I was astounded. Not only did I find a doctor who knows of EDS, but he actually suggested it as a diagnosis!
When I walked into that appointment, I expected to walk out with more questions than answers and a long journey ahead of me on the road to diagnosis. Instead I walked out with one and a half diagnoses and a plan for how we’re going to start dealing with the fibro as well as some advice about my joints. We’re going to try a magnesium supplement, Tai Chi, and acupuncture for fibro and he recommends that I get knee braces in addition to my ankle braces to help with my joints. As I walked out of the appointment, I was shocked and amazed. I could barely process how well the appointment had gone.
It’s been a long five years of pain and looking for answers, but it seems I’m finally on my way to answers and hope. To all the other undiagnosed spoonies reading right now, please don’t give up. I know how hard the journey can be. We face so many doctors who deny us and ignore us. We’re brushed off and doubted and placated. We spend years looking for answers we fear will never come. We doubt our own experiences, wondering if it really is that bad, worrying that there’s not really anything wrong, fearing that this has all been concocted within our minds. But there is hope ahead. There are answers in your future. It may take years to get there, but one day you will find a doctor who believes you. One day you will get the answers you deserve. One, maybe we won’t be in so much pain. There really is truth in spoonie strong. We are so strong because it takes so much strength to go through this process. Yet, if you push forward, even when hope seems lost, it’s possible to get to a better place.