As my reading the faces of AS has been helpful to normalize my experiences for me, I’d like to offer my story in the hopes that it helps someone too:
My name is Donna. I’m 34 years old. I was diagnosed with Ankylosing Spondylitis this year, after 20 years undiagnosed and incorrectly treated.
I’m finally letting myself hope for relief.
I first began having back and joint pain at age 14. There have been many questions and even more false explanations since then. As my back pain became worse, it was damage from a minor car wreck, minor scoliosis, and growing pains. When my knees hurt too bad to run the required laps for cheerleading without sobbing, the doctor said it was a displacement of the kneecaps.
I became pregnant with my first born at the age of 16. My hip pain was so severe, it would keep me awake (and crying) much of the time. The doctor said it was just part of pregnancy.
At 18, I saw my first orthopedist and participated in my first physical therapy. He told me that my back problems were severe and degenerative. He wrote a prescription for physical therapy and many for pain pills, muscle relaxers, and NSAIDs and sent me on my way. I still don’t know with what he had diagnosed me.
I had my second child at age 20 and experienced much the same sort of symptoms.
Since that time I have been diagnosed with: Scoliosis; degenerative disc disease; desiccated disc in lumber, slipped disc in cervical spine, and bone spurs on thoracic spine; hypermobility syndrome; thoracic outlet syndrome; and osteoarthritis all over the place (back, neck, knees, hip, ankle, wrist). I have been to orthopedists, orthopedic surgeons, chiropractors, general practitioners, four physical therapists. I have been offered more pain management medications than I can count.
My last real attempt at treatment until now was about 11 years ago. I had a doctor who stated that my pain was caused by scar tissue and began doing “trigger point injections”, this entailed him poking around my back until he found a particular painful spot and then him inserting a large needle and stabbing the spot repeatedly to “break up” the scar tissue. It started with three to five injections two times a week and increased to six to eight injections three times a week. After months of this, while on a fifth or sixth injection, I suddenly couldn’t draw breath. After the doctor stopped panicking and checked that he had not punctured my lung, he said that my muscles were in spasm, and proceeded to give me five or six additional injections on each side of my spine, until the muscles finally relaxed and allowed me to breathe deeper than a gasp. I didn’t go back.
This doctor had also been fairly liberal with medication management. I had told him that I did not want to take narcotic medication. He had prescribed two tramadol, four times per day; 550 mg of naproxen three times per day; and Flexeril for when spasm was intense and Soma when it was more intense. I didn’t take as many as prescribed of anything but the naproxen. Then a pharmacist friend of mine told me that tramadol should be classed as a narcotic (and was in the process of being re-classed). I decided that I was done with medications.
I told myself I was tough enough to learn to manage the pain without treatment. And, to some extent, I did. I was often miserable, but I did not go back on pain medications. I continued to take Flexeril when spasms were very bad. I switched between 800 mgs of ibuprofen four times per day and 440 mgs of naproxen, three times per day.
But I hurt, all the time. I rate my constant pain at about a 4/10, with periods throughout the day where it jacks up to about 7/10 (mornings, after sitting at my desk for very long. I’ve learned, however, that what I rate my pain is very different than most because I have become so habituated to it. For example, when I had my wisdom teeth out and got dry socket, the dental surgeon’s office did not check for it because I did not describe the pain as intense. Two summers ago, I got appendicitis and worked for two days with it before finally going to the hospital. At first, they didn’t think that it could be appendicitis either, because I did not appear to be in “enough pain” for it to actually be appendicitis. I talk about this not because pain tolerance is anything to be proud of, but because my pain baseline is so high that I don’t think that doctor’s recognized the severity of my symptoms.
Two and a half years ago, I thought I was having a heart attack. After completing an EKG and establishing that there is nothing wrong with my heart, the doctor’s exam revealed inflammation where my ribs and sternum connect. I was put on gabapentin. Even with this common AS symptom, my doctor did not think to refer me to a rheumatologist.
Last year, around New Years, I asked my doctor for a referral to a rheumatologist. Not for AS, because at that time I had never heard of AS, but for Rheumatoid Arthritis. I had been experiencing intense pain and swelling in my fingers, and I had begun to develop nodules on the inside of my knuckles. I was referred to Dr. Ananda Walaliyadda. At first I didn’t not understand the his focus on my back and other big joint pain. I told him everything that the other doctors had told me, and explained that the back pain is a separate issues.
After several weeks of testing, Dr. Walaliyadda told me that I didn’t have RA. At first, I felt devastated. I had thought that I finally figured out the cause of my pain and I was so sure that RA explained everything. I had never heard of Spondyloarthritis or Ankylosing Spondylitis and I thought he was dismissing me the way that so many doctors had before him. He was patient with me, however, and as he explained the disease, everything started to click into place. I am positive for HLA-B27. My pain started in early adolescence, especially back pain. My sacroiliac joint is always inflamed. My toes swell. I am very stiff in the mornings. I have periods of intense fatigue. And so on and so on.
Terrifying. He showed me photos of an individual with bamboo spine.
Amazing. He diagnosed in a couple of weeks what countless doctors over 20 years had missed.
I’m now in my 9th month of treatment for AS. I tried Enbrel for 6 months. It worked well at first, but then the efficacy began to decline. I have been on Humira for the last 3 months. It did nothing for me. I’m getting ready to try Cimzia.
While finding the right medication is frustrating, I’m hopeful. For the first time in 10 years, I’m hopeful. It breaks my heart that I missed so much of my children’s childhood due to pain interfering with activities and fatigue sapping me of motivation. But I’m hopeful now, that those things can be minimized and I can regain some my ability to participate in activities.
Being able to read others’ stories about AS, has helped me tremendously. Thank you all for sharing and for reading.
Idaho, United States of America