A Long Time in Pain with No Diagnosis
I'm a 26-year-old female. I work as a Physical Therapist Assistant for an outpatient orthopedic clinic at a physician-owned medical group. My first thought about work with this disease was, "Thank God I don't have a desk job." I can't even sit longer than 5 minutes before my pain begins to increase.
I am not really sure that I can remember my life without pain. I am a former competitive gymnast, started when I was 3 years old and retired from the sport when I was 17. I was always into fitness and exercise for most of my childhood and young adulthood. I sustained minor injuries due to gymnastics, but I always seemed to be in chronic pain, gymnastics can do a number on your body that's what I always thought.
I went back in for a follow-up and the same doctor diagnosed me with Achilles Tendonitis, prescribed me a heel lift and sent me on my way. I lived with heel pain for almost 10 years until I was 21 years old, at which point I could barely walk after 1 day of work.
Enough is enough
I decided enough was enough, and I saw an orthopedic surgeon who did an MRI and said I had Os Trigonum Syndrome (an extra bone in the ankle that causes pain in athletes). In the meantime, I quit gymnastics and began experiencing lower back pain and neck pain.
It was pretty mild, so I just figured it was aches and pains from doing gymnastics for 13 years. The spine pain continued to be mild until it worsened in 2017 after experiencing excruciating pain due to ileitis (inflammation of the small intestine). It caused a handful of symptoms, including abdominal pain, constipation, diarrhea, nausea, vomiting, and severe fatigue. The symptoms resolved on there own after 2.5 weeks. They tested me for Crohns Disease.
Additional testing with no results
I saw two gastroenterologists (GI), the first one did a colonoscopy that turned out to be negative then sent me on my way without any other guidance. The second GI did the additional testing, that the first doctor should have done, and the tests again came back inconclusive. They stated that "inflammation in the small intestine due to Chrohn's Disease doesn't just go away." I was so sick, I could barely get out of bed for 2 weeks, so I was astonished that basically they were saying nothing's wrong with me.
Since that flare, I have had a significant increase in my spinal and joint pains with moderate to severe cervical, thoracic, and lumbar pain causing my muscles to feel like they're on fire. The pain has now progressed to my right shoulder, clavicle, ribs, jaw, knee, and right anterior tib tendon at the front of my ankle. I was hospitalized for chest pain and shortness of breath at the end of last year due to a bout of costochondritis, which continues to persist intermittently today. My pain fluctuates, some days are better than others.
Same pain, still no diagnosis
When I first went into the clinic with complaints of spinal pain, I saw a physiatrist. He did an MRI that basically showed every cervical disc had bulged. He threw it off as a myofascial issue. I spent all last year doing every therapy possible, spending way more then I can afford just to prove to the doctors that nothing helps me. Then I saw my primary care physician at the end of last year. Now I just changed insurances, so this was a completely new PCP.
I told this doctor some days I can barely get out of bed or sit up without feeling like I'm 70 years old. She tested inflammatory blood markers, ANA, and RF, all the tests a rheumatologist would need to do. My PCP did them to determine if a referral to a rheumatologist was necessary. My inflammatory markers came back elevated as to be expected as they were 3 years ago when I had my GI issues.
Hopeful for the future
Despite this knowledge, the doctor's office still called me to notify this, but then also said that there were no other recommendations at this time. I was so angry! What doctor thinks that it's okay to do absolutely nothing after a patient tells you they're in so much pain sometimes that it's hard for them to get out of bed? I was so pissed that I took it on myself to go see a rheumatologist just to be certain.
It was a 4-month wait to get into the office. Within that time, I had flare-up after flare-up at least 1 to 2 times per month.
1 month ago today, I actually received a diagnosis of ankylosing spondylitis (AS) by my rheumatologist, 14 years after the initial onset of pain. Through this crazy life of mine, I have learned to always advocate for yourself especially in the healthcare field, educate others whenever you can, and be hopeful for the future. I am nervous about my future with this disease, don't get me wrong, but always strive to surround yourself with the positive and try to build up a strong support system around you.
Do you use the word disability to describe your AS?