My A.S. Story: Kim D.
“It feels like the pain is coming from the inside of my bones!”
“It’s not my knee/ankle that hurts; it’s everywhere AROUND it that hurts!”
How many times from my early childhood to my present-day “early grandparenthood” have I said or thought these words? More times than I care to count…I was athletic, riding my bike everywhere, climbing trees, running, cheering, and in general, playing like every other kid in my neighborhood. Except from time to time, I would get absolutely blinding pain in my legs and lower back that would have me retreating to my bed in tears. The only thing that ever seemed to provide a measure of relief was slowly rubbing my foot on the affected side slowly back and forth, back and forth on the bed, essentially soothing myself to sleep it off. As I got a bit older, my mom or dad would sit on the side of the bed, rubbing the bottoms of my feet; we didn’t know it at the time, but I now know that they were “accidentally” using acupressure and massage to provide the quickest relief.
These flare-ups would occur a couple of times a year from the time I was in elementary school and through high school. My parents took me to my pediatrician and an orthopedist, but neither had an explanation beyond perhaps a very severe case of growing pains or perhaps “an odd form of juvenile arthritis” that failed to show up in blood work. I’m sure at some point, everyone was convinced I was faking this, as my labs always returned “in the normal range”, even when there was noticeable swelling in a knee or ankle or the joint felt warm to the touch. Not once though did my parents ever tell me to “get over it” or make any other sort of condescending remark; they could see I hurt, and after all, this usually happened towards the evenings and not when you might expect a kid to “have pains of the avoidance type”…when asked to clean their room or do their homework!
Fast forward quite a few years…my husband and I had started a family. Our first child, a daughter, was precocious from the start. She was standing and cruising around furniture at a bit over 7 months, spoke in complete sentences at 13 months, and was completely potty trained at 18 months! This was a cakewalk! Apart from that “colic” that hit pretty hard, oh and the occasional evening “tantrum” of shrieking and thrashing legs, she was an easy child. As a redhead, she was prone to skin rashes that seemed to pop up overnight and last for weeks, then just as suddenly disappear. Once in a while, she would get clinging and whiney in the evenings, telling us her legs hurt. Like my doctors had told my parents so many years prior, her doctor assured us it was growing pains. We rubbed her legs and feet until she could fall asleep, and that would be the end of it for a few months until the next spell.
When she in 8th grade, she had a frightening bout of eye pain. I got a call from her school, that she was in the clinic with a pillow over her head, and the nurse thought she had pink eye. I was to pick her up immediately and have her evaluated before she could return to school. She couldn’t open her eyes as the light would start her screaming, and when I took a quick peek at it in the room, I could tell her pupil looked quite odd, like a cat’s eye. Thankfully, our optometrist had me bring her straight from school to her office, and it only took her a moment to recognize the problem as iritis; she sent us straight from there to a pediatric opthamologist. I couldn’t believe that in the space of two hours, we would be sitting in a second doctor’s office. How often does THAT happen unless it’s something quite serious? This new doctor was incredibly thorough and patient with his explanation that typically they don’t see iritis in patients so young unless there is an underlying auto-immune disease: rarely is it idiopathic. He was as puzzled as everyone else when her lab work came back negative for everything, although he did say that it could be very early on in “whatever” she had, and just had yet to manifest to a sero-positive level yet. She would have a couple more flare-ups through high school, but still never have anything positive in her blood work other than very mild inflammation…that and monthly menstrual cycles that were so painful they landed her in the emergency room on occasion. Her behavior became out of control at times: she drank, demanded pain meds constantly. She had progressed to near constant pain she claimed, but was never able to give us really specific details of that pain. As time wore on, doctors suggested she was just seeking attention in order to get pain medication. I wasn’t completely convinced, but at times, I thought that might be the case; my adorable little baby had turned into a terror of a teen!
Over the years, my husband and I would have two more children: both boys. Both would have periodic leg pains, and yet again, nothing would ever show up in their blood work. The middle son would only rarely have any complaints, but his younger brother, the most athletic of the bunch, would have them pretty frequently, along with bouts of horrible diarrhea in the mornings. The “baby” was a pretty gifted soccer player, but seemed plagued by multiple breaks of his fibula, wrists, and ankles. The suggestion was he wasn’t warming up properly, or that he was reckless in his tackles (never mind that the breaks occurred from falls or being tackled). He couldn’t sit still for long, even in school; he complained that if he wasn’t moving, he would stiffen up like the Tin Man. His teachers just thought he had ADHD, but mercifully, being a special education teacher, I could see the behaviors didn’t fit the profile so we refused to start him on medication in spite a teacher’s urging. Letting him have a desk at the back of the room helped though since he could stand up and work when he needed to move.
All this time, I had been having leg pains and horrific back pain with increasing frequency. It felt like the same leg pain from my childhood, but 10 times worse. Rather than being able to sleep it off, now I would also wake up with it; sure I was still physically active between teaching and taking care of the tiny five-acre farm, so I should expect to have some aches and pains. I certainly wasn’t getting any younger, and we all develop some pains as we aged, right? I thought so, at least until one morning I was so stiff and in so much pain, that I literally had to crawl to the bathroom. This time, the flare up was still going strong two weeks later, and my family doctor sent me to a neurologist, convinced I had MS. After all the MRIs came back clean, it was off to the rheumatologist. For two years I saw this man every month, and nothing would show up in the blood work or the x-rays apart from some mild scoliosis and a “touch” of inflammation. I had begun my own investigation since I now had decent access to the internet as I had gone back to school to work on my masters degree. I ran across a relatively obscure condition completely by accident: ankylosing spondylitis. As I read the symptoms, I actually got excited! This was me! I called my rheumatologist the next day to share what I found with him; he sure burst my bubble when he quickly dismissed it with a phrase I will never forget.
“You don’t have that. Only old men develop that.”
End of discussion. I was devastated, in a warped way. Here I thought I finally had and explanation for what was sapping me of all my energy, causing me to collapse with exhaustion while grocery shopping, and kept me in bed for weeks at a time. I decided this must all be in my head, and I resolved to just keep going no matter how I felt. In hindsight, I have no clue how I did it.
Meanwhile, back at the ranch so to speak, my daughter was grown now and had a young son of her own. They had moved back in with us, and while the circumstances weren’t great, we were overjoyed to have our grandson with us round the clock. There really is nothing so precious as a grand child! So when one night as we got him ready for bed, he started whimpering and holding his knee, we all exchanged terrified looks. There was no way we could possibly be looking at a 3rd generation of mystery leg pains was it? My daughter then shared that she had been having horrible bouts of back pain and iritis that just wouldn’t clear up. She had no insurance, so we bit the bullet and paid out of pocket for her to see a highly recommended opthamologist who would take payments over time. It turned out to be like hitting the lottery with a found dollar. He took the most extensive history next to the geneticist the youngest and I had seen (a dear friend who thought this had to be a mitochondrial disorder due to the fact that all three of our kids seemed to be following in some shape or form in my footsteps). He then sent her on to the head of rheumatology at the same teaching hospital at the university where I was now working on my Ph.D., a stack of letters and lab results in a folder, and the first “positive” news we had heard since I was a little girl in braids. He was quite certain that our daughter, and most likely the rest of us, had a condition called ankylosing spondylitis. When I told him of the conversation with my rheumy a few years earlier, he just responded that he felt it was irresponsible for a doctor to not keep up with the latest research in his own field.
Two months later, I got a call from my daughter from the new rheumatologist’s office; she was excited and crying so hard I could barely understand her words: “I DO have AS mom! We aren’t crazy!” In a blur, I was in with him next and confirmed (although I would get a more broad diagnosis of Undifferentiated Spondylorapathy thanks to the constellation of issues that included a slight mitral valve prolapse, intestinal problems that mimicked but weren’t actually Crohns, and extreme issues with enthesitis). We finally had something definitive we could cuss out on those days when the pain was excruciating, but now we also had medications to try and slow the progression.
Today, our middle son is 22, and after not having a flare in nearly 4 years, is just starting to have back issues, so it’s now his turn for a “stem to stern” evaluation. The now 18 year old“baby” was diagnosed as having juvenile AS by a pediatric rheumatologist three years ago, although my rheumy (who is taking over the boy’s treatment as his pediatric rheumy just had to go accept a position at some little school up in Baltimore…John’s Hopkins) believes he too has USpA like me rather than AS. This kid is a walking testament to determination not to let this horrible condition rule his life. He was now broken his fibula 3 times (and on a lighter note, none of us can say “fibula” without putting on a Count Dracula heavy accent…go ahead, try it!), both wrists, both ankles, his L-4 vertebrae, and his hip…all while playing soccer. At least he DID break all these things before starting on the Mobic and a daily routine that involves long periods of stretching (for some warped reason, he refuses to call it what it is: yoga). He has been featured in an motivational slideshow on the
www.spondylitis.org site promoting why exercise is critical, and he will be playing soccer in college this fall. He is realistic that he probably won’t make it to the pros with this condition, but he is determined to give it his best shot rather than look back in 30 years and wonder if he could have. My grandson, now 8, is learning to verbalize and describe his pain; he is doing fine with NSAIDS. My daughter still struggles with her disorder; she is fighting addiction to opioids and alcohol, two horrible disorders on their own. We take it one day at a time have learned to measure success sometimes in hours.
As for me, I take it a day at time too; Enbryl and sulfasalazine keep me going most of the time. I am STILL trying to finish the Ph.D., but I’ve come to the conclusion that it won’t be the end of the world if I don’t. I’ve slowly learned more about what really matters to me in life, and have quit apologizing for leaving a high-stress, well-paying job teaching in a large university to teach for peanuts in a tiny, 96 student tuition-free school for children of very limited resources (aka: children of poverty). I love that I have found what makes me want to get out of bed in the morning, in spite of body parts that refuse to cooperate! I am blessed to still be married to the same, slightly warped and beat-up Brit for 29 years this December, although there were times I didn’t think we would make it this far. That, however, is a story for another day.
Virginia, United States of America
