Today's submission comes from Rachel Esser.
As a toddler, I was perpetually too small for my age and was sent to specialists to uncover any underlying problems. They told my parents I wouldn’t hit five feet (but I showed them! I’m 5 1 ¾). I was in and out of the hospital with pneumonia multiple times. I had a blocked tear duct that caused me to wake up with my eye glued shut every morning and had to have surgery. All before age 5.
On top of that, I was a crawling, walking disaster. Before I could walk, I stuck a phone cord in my mouth. Lesson learned: Phone cords are mildly electrified when plugged into the wall. Around age 3, I knocked a TV over on myself. Lesson learned: Don’t put a stand on wheels on a marble mantle. Shortly thereafter, my mom rolled over my hand with a full shopping cart of groceries. Lesson learned: Don’t let your kids sit on the bottom rack of a shopping cart. My cousin was swinging me around by my arms once and my elbow popped out of place. Lesson learned: Don’t do that. I was playing in the snow one day and went into the basement for some reason. I apparently had a run-in with a box staple and came out bloodied, and, luckily, numb. Lesson learned: Box staples are evil.
As I grew up, I became slightly less accident-prone (save knocking my teeth out on a jungle gym and a glass cutting my toes), but a new, more persistent problem emerged. Through most of elementary school, I had fits of excruciating pain in my knees and legs. Luckily, I don’t remember a lot of it, but I do remember crying my eyes out trying to soothe the pain with a hot shower. And I remember repeated doctors visits and blood draws...and no real results. Diagnosis: Growing pains.
I had random stomach issues and hip pain throughout childhood. I also had an undiagnosed anxiety disorder, but that’s a story for another day.
Luckily, that subsided, but in my mid-twenties, I started having terrible back pain that would wake me up from a dead sleep. I was able to get in to see a orthopedist. Diagnosis: Sacroiliac joint dysfunction. Treatment: cortisone shots. Those shots worked and soon, the pains stopped.
Cut to 2015. I was living in NYC, meaning miles of walking and dozens of flights of stairs each day. The back pain came back, with a fury. Honestly, I saw so many doctors and tried so many things during this time, it’s kind of a blur.
I saw a physiatrist who specializes in holistic and Eastern medicine first. Diagnosis: I’m weak and sensitive. Treatment: Ugh, get stronger and less sensitive? Ok, thanks.
I saw a second physiatrist after this who worked closely with physical therapists. She sent me for xrays and nerve testing. Diagnosis: Slight scoliosis (per xray) and impinged nerve (per nerve testing and PT). Treatment: Anti-inflammatory meds and PT. This helped my back a little, but that pain was soon joined by a mysterious neck pain, worse than anything else I’ve felt. Nothing could even touch it.
Next, I saw my primary care doctor, hoping she could point me in the right direction. Diagnosis: Bad luck. The woman literally told me I just had bad luck. I asked if maybe, given the history of autoimmune disease in my family and my on-going symptoms, I should see a rheumatologist. She basically said “sure”.
So, I saw the rheumatologist. At this point, ending my severe neck pain was my primary concern. She tried a couple of anti-inflammatory meds and trigger point injections. Nothing helped and she couldn’t solve it, so she basically shrugged at me and pushed me off to the physiatrist in her office.
On to the third physiatrist! His diagnosis? Cervical dystonia. Treatment: A low-grade muscle relaxer. Sweet relief!! Oh, and then his office called to tell me he would only be in the location I could get to one day a week for 2 hours, making appointments damn near impossible. Bye-bye, doc.
With no primary care to guide me (see bad luck diagnosis above), I made an appointment with a neurologist. She did some tests and had my head MRI’ed. Nothing.
Finally, I needed my annual physical anyway, so I found a new PCP. I basically just needed to start over and couldn’t handle even thinking about any of this on my own anymore. Luckily, I found someone who was willing to listen and take a second to think. She referred me to a rheumatologist in her office.
And so we have the second rheumatologist. She was kind and patient and willing to help. She ran some tests and lo and behold, a diagnosis! Ankylosing spondylitis. So I had a disease that sounds like something Dr. Seuss made up, but at least it was something. She tried one medication and I got nothing. The second, a stronger biologic (Humira), actually helped!
And then I started getting low-grade fevers constantly. For weeks. My rheumatologist worked with me to help find a cause. I had a ton of blood drawn for a blood culture and saw a contagious disease specialist. The rheumatologist finally ran an antibody test for Humira to find that I was now allergic to it. Next in line was another injectable medication, Cosentyx. This helped for a while, but wasn’t as effective as Humira. We doubled my dose and was making some progress.
Once I finally had everything (nearly) sorted out, we moved back to Florida. So began another hunt for doctors. Called multiple rheumatologists in January to be told the next available appointment would be in May. So I kept calling around and finally hit on one with only a month wait. Sold.
Immediately I could tell he wasn’t convinced by my ankylosing spondylitis diagnosis. At my first appointment, he ordered an xray, told me how most people are misdiagnosed with lupus and some ridiculous (wrong) percentage of women have fibromyalgia, and sent me on my way. No help for the pain I was experiencing then. When I returned for my results (which were clear), he ordered an MRI and prescribed ibuprofen (600mg 3x/day). When I questioned this given my history of IBS and gastritis, he basically told me it wouldn’t affect that and wrote me a script for Prilosec. Thanks.
Finally my follow-up after the MRI was here. I was hoping to get some answers and some help, but also felt like I was gearing up for war. And war it was. His PA came in first and told me my scan was clear. She asked a few questions I’d already answered and went to get the doctor. He came in all smiles to tell me the good news that the scans were all clear. And to essentially say my previous doctor was wrong. And to tell me how 10% of women have widespread chronic pain. When I told him it wasn’t widespread and that my inflammatory markers have been elevated, he basically shrugged and told me my inflammatory set point was probably just naturally high. And when I told him that wasn’t the case, he moved on. I meanwhile started tearing up and pinching myself so I wouldn’t give him the satisfaction of me bursting into tears. He then proceeded to tell me about Cymbalta and how it helps with chronic widespread pain and was safer than the ibuprofen he prescribed. Once again, I chimed in to note that my pain wasn’t widespread and he essentially said “it doesn’t matter”. Then I asked how it would interact with the Zoloft I was taking (which was in my chart), he said I’d have to stop taking that. And when questioned about the issues that may cause, he said “you probably shouldn’t try Cymbalta”, shook my hand, and left the room.
I made it out of the building before I started sobbing. I essentially swore off doctors at this point because the idea of going through this again is sickening.
In the week since the last appointment, I’ve started a pretty radical anti-inflammatory diet (vegetarian, with no gluten, sugar, soy, corn, caffeine, alcohol, dairy, eggs, white flour, white potatoes, or processed food) to see if I can find any relief. Fingers crossed that this helps because I’m not sure where to go next.