Each individual affected by Ankylosing Spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration for anybody in a similar situation. We’d love your story as well! Send it to us at firstname.lastname@example.org
By Stacy Bagal
I am a 64 year old marathon [26.2 miles] runner who was diagnosed with Ankylosing Spondylitis in May of 2016.
I started to have lower back pain when I was in my late teens. Being an active collegiate basketball player, I thought it was just your typical aches and pains. I recall going to the doctor a few times but was never diagnosed with anything other than normal wear and tear from playing sports. Shortly after college, I also started to experience occasional but sharp lower left abdominal pain to go along with my lower back pain. The doctor diagnosed my lower abdominal pain as diverticulitis and told me not to eat nuts. What a drag, I loved eating nuts.
As the years went by, I experienced continued lower back pain and periodic but severe lower abdominal pain. I started to go to the gym, and ran on the treadmill about 10 miles per week. I started training to run marathons in my thirties as a way to stay in shape, meet new friends and set new goals.
I started to increase my workouts, reaching upwards of 60-70 miles per week. I would start my run at 4:00 AM and ran 10-13 miles per day, no matter what the weather was. This would give me enough time to be in my office at 8:00 AM. I ran about 1-2 marathons per year. I retired in 1988 after 14 marathons at an average pace of 3:40. I stayed retired from marathons and never had any desire to run another one. I thought that it would take something very special to change my mind. Then the tragic terrorist attack at the Boston marathon happened. This event changed my life, and I wondered what I could do. A few years later in 2014, after watching a recap of that event, I told my wife that I wanted to start to train for a marathon [26 years later] and qualify to run Boston, to show support for my country and for the Boston runners and families whose lives would never be the same.
My training was going along great, and I ran a few half marathon runs in early 2015. I was ready and confident to run in my first marathon since 1988 in October 2015. My training runs gave me confidence that I could qualify for Boston [you need a qualifying time]. Three weeks before my marathon in October 2015, I finished my last 20 mile run. Those runs are the toughest, because you are forced to exert so much energy, and it takes so much out of you. The day after, I went out for a slow 3 mile jog, just to shake things out. A few minutes into the run, I experienced sharp pain in my groin area. I stopped suddenly because the pain caused from my foot striking the ground was enough to take my breath away. I could hardly walk. The next morning I could hardly get out of bed.
I called a sports medicine doctor and begged for a same day appointment. I couldn’t get one, but I just showed up anyway and wouldn’t leave till they saw me. After all, my race was less than three weeks away and I had trained for almost one year. The doctor took an x-ray of my pelvic area and said that I had an old pelvic fracture and wanted me to do physical therapy, and not to run for a few weeks. He also reminded me that I was 63 and implied that I was too old to be running marathons. The problem with his diagnosis was that I never had a pelvic fracture, so I was not confident in what he said. He said that if the pain subsides, that it was OK to run the race. I also did the recommended 10 PT sessions. Even that concerned me, since every PT session was very painful. I was very concerned that I was not doing the right thing. Then again, as long as the pain went away, which it did, I was OK. I did not run for about two weeks before the race, which is not the way you prepare and taper for a marathon. You are to cut back your training, reduce but not eliminate your runs.
Race day brought a lot of uncertainty, since although the pain was gone, I wondered if and when the pain would come back. I was never confident that the doctor found what was causing the problem.
I clearly remember the start line. I was so nervous and scared, and not sure what was going to happen. I went to the bathroom three times in 15 minutes before the race. I was sweating profusely which was not helped by the 85 degrees at the start of the 5:30 AM race. The race began and all was good, no pain and my splits were on Boston target, but I held my breath and wondered if the next step would bring back the pain. I remained on track for Boston till mile 17. Suddenly, the pain appeared and got real intense in the lower back and in the pelvic/abdominal, adductor and abductor areas. Each step was difficult, and I realized that Boston was not going to happen, but more important, I was just hoping to figure out a way to finish. I looked for a medical tent, or emergency vehicles to help. I’m not a quitter and never failed to finish any marathon that I started, but this was a medical emergency. On top of that, it was 90 degrees and the pavement was so hot, it was almost burning through the bottom of my running shoes. Since I couldn’t find anyone to help, I kept pushing forward. It took me 2 hours for the last 6 miles, but I finished. I was never ever in pain like that. The end of the race resulted in a one hour ice bath, legs that could hardly move, and quickly raised my level of anxiety as to what was wrong with me.
The next day after I got home, completely panicked, I called a different sports medicine doctor and got an appointment in a few weeks. During this period, I had trouble walking. He ordered an MRI and after, diagnosed me with a Pubic Synthesis Disorder. He prescribed PT and to go to a pain management doctor. The pain medicine doctor gave me an injection into the pubic area, told me to wait four weeks and then if the pain was gone, that I could start running albeit, very slowly. So around Thanksgiving 2015, I was off and training again, with a Feb. 2016 marathon date in New Orleans, as my next goal.
My training was going along great. Then around mid-January 2016, during a run, once again, out of nowhere, my hamstring this time, started to bother me. I tried everything to address the problem: stretching, heating and cold pads, more PT, rest, etc. During a follow up run, the hamstring hurt so bad, I thought I tore it, and again couldn’t run, let alone walk. Then my back started bothering me, and the sharp abdominal pain, diverticulitis or whatever, joined in. I tried desperately to fix the hamstring problem but could not and missed that race, lost out on the pre-paid hotel, airfare and race fees. More importantly, I started to wonder if anybody was ever going to find out what was causing this pain.
I went back to the sports medicine pain management doctors, who both said there was really nothing more that they could do for me, and that I should give up running. I refused to accept this. I went to many more PT sessions and explored phototherapy and blood transfusions, change of diet etc. I did lots of research and tried to figure this out on my own. In April being totally depressed and irritable, I went to my general physician, who ordered a full range of blood tests. At this time, my entire pelvic area, inside and outside of legs, shoulder, and foot all hurt along with tingling in my fingers and toes. I was getting really worried. The doctor put me in a walking boot and said I had a small fracture in my foot. What?
The tests came back all normal except one that indicated that I had the HLA-B27 gene, and to see a rheumatologist. I saw him in May and he was able to quickly diagnose me after hearing about my pain, looking at the x-rays, MRI and blood test, with ANKYLOSIS SPONDYLITIS (AS). He said that I was a unique patient in being diagnosed with AS at my age. Normally AS is diagnosed in the 20’s-30’s, not in a person’s 60’s. He said AS was causing the back problems, abdominal pain, adductor/abductor issues, tingling in fingers and toes, foot and shoulder pains. He prescribed me Humira and Meloxicam.
He did not bless me to continue to run marathons, but said that the exercise was a primary reason that the fusion in my spine was not more pronounced. He said, I sort of “outran the spread and development of the disease.” He told me to take up biking and or swimming, or other low impact exercises. He said if I wanted to run, to go slow and very short distances. All I heard, was that I could run.
Marathon runners are very committed and a bit nuts, so after taking four weeks of Humira injections and feeling better, on June, 2016, I stared to run again. I set my target for an October 2016 marathon in Toronto. This would give me 18 weeks of training. Little did I know that by not training for almost 5 months, I lost all my conditioning and had to start training from the ground level by running one block, then two, etc. It was a brutal training period especially living in South Florida in the summer, where every day was as humid as can be. It took me about six weeks just to get conditioned to really start to train. During my longer runs, I found it hard to get past 13 or 14 miles without my AS acting up. I changed my training routine, and gave up running on back to back days, instead, using a bike as an alternative. There wasn’t a day that didn’t go by where I didn’t have some degree of pain. I was never 100% pain free or even a 100% confident that I would even be able to complete the distance since I was unable to during my training. Ready or not, Toronto here I come.
I remained so unsure of my conditioning, that I almost changed my race distance the day before at the expo, from a marathon to a half marathon. Having run many marathons, you know what it takes to be properly trained. I thought about this the entire time attending the pre-race expo. I could never forget that pain, and didn’t want to put myself through that again. Marathon running is just as much mental as it is physical, so to that end, I just thought about all the races I completed and obstacles that I faced in my running life. If I break down physically, I always have my strong will and was determined that AS wasn’t going to stop me.
That morning, I lined up with 27,000 runners, taking it all in, and so proud that I made it to the start line. In large races they put you into corrals based on your projected time about 20-30 minutes before you start. It gave me plenty of time to look around and admire the other committed runners, I’m sure with problems of their own, and to reflect and appreciate all that I have accomplished. The weather for me was perfect, 60 degrees and raining. I reminded myself to relax, and said a prayer. I was determined that I was going to beat AS by completing the race and prove to myself and others inflicted with AS, that this could be done. The horn went off and the beginning of a long day began.
I decided to track closely to another runner after I overheard at the start line that he ran Boston a few times and ran this race last year. Part of me questioned this strategy but the other part of me said what the heck. As I was accumulating the miles, I felt great, no pain and running at a Boston qualification pace, staying a few meters behind him. Even after mile 13, I felt great but aware that I was now heading into distances that caused me problems during my training. I never lost sight of him till mile 15 when I started to tire and stopped at a water station.
I started to feel pain in my back and lower abdominal areas, and started to panic. I continued to mostly run, and only walked during the water stops. At mile 19, I stopped at a medical tent, bent over, and unsure about everything. Not sure if I was hitting the wall, AS, or that my lack of training had caught up with me. The attendant asked me what was wrong, and I couldn’t or didn’t even want to mention AS; for all I knew, he would not have known what that was, and I was in no condition to explain this to them. I asked for two ice packs, one for my pelvis and the other for my back, and I started to run, a bit awkwardly till I discarded the ice.
During the next three miles, the spectators were awesome, yelling encouragement and calling you by name that kept me moving forward one step at a time to that finish line. At this stage of a marathon, your body is telling you one thing, while your mind is telling you something else. It is a battle, and you’re trying to overcome the physical pain and find a way to finish. Being an experienced marathoner, I’ve been through this many times. My dreams of going to Boston was gone, but my secondary goal became front and center, and that was to finish and prove to everyone with AS and to myself, that you can finish a marathon.
During the final few miles, my mind wondered as I started to think about living the rest of my life with AS, but that I didn’t want this to stop me from doing one of the things that I most enjoy - running. As these miles passed, I drifted off into another space, where I recalled the Yonkers Marathon, my first marathon I ran many years ago, all the support that my wife has given to me, and life in general. My last half a mile was a blur but pure euphoria, as I tried to visualize and store for eternity, how I was feeling and that I was truly blessed.
I recall crossing the finish line in tears, dizzy, a bit disoriented but overwhelmed with satisfaction. The prior 15 marathon finishes combined weren’t this important to me, but finishing with AS meant everything. The medical people were monitoring me and I told them about AS. They were so happy for me and waited by my side till I got back on solid footing before releasing me. It took me a while to get my emotions in check, then got my medal placed around my neck, and had my finisher’s picture taken. I finished with a great time of four hours 50 minutes. Although I needed four hours to qualify for Boston, I still achieved my ultimate goal, which was to finish strong, not have any regrets and prove this can be done.
It only took me a few days to recover and feel better and I started to run again, planning on a half marathon in mid-November. Every day, I wake up with some type of pain, some days worse than others, and unsure about my future in marathons. Unless you are able to train for marathons, you can’t run them.
This experience and accomplishment was truly rewarding. I found that by having a positive outlook, keeping up to date and educated on the new drugs, proper stretching, and nutrition, that I can achieve amazing things.
Other posts by Stacy Bagal
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