Hi. My name is Sharon Cullen, and I am the face of Ankylosing Spondylitis. My story began many years ago when I began having low back pain at about 11 years old. I struggled to walk back and forth to school and told my mother. She took me to two doctors and the diagnosis was “growing pains.” Eventually the pains let up on their own, over the course of weeks to months.
Later as a teenager I found that if I laid on a hard surface or a sandy beach, my hips felt like they’d lock up and I couldn’t get up by myself. Once in an upright position I felt better. And then again with pregnancy I felt much worse.
In 2003 I was under a great deal of stress. I did have a back injury after lifting something, which I felt was muscular, but over time I gradually got worse. In 2002 I was able to do the 60 mile walk for breast cancer. I was in so much pain though that I needed assistance from physical therapists in order to complete the event. I have never been able to train for anything since. My sister in law who was with me and had pain throughout our 6 month training seemed to get through it just fine, where I struggled. But I made it. I was never the same again however.
2004 was a horrible year for me. My kids were graduating which I was very happy about, but some marital problems slipped in and it wreaked havoc on me emotionally, and surprisingly, physically. A year later one of my twin sons went off to the Navy and was sent to the Middle East. He was on a submarine so as a family we were left in the dark ALL of the time. Submarines are very top secret. Movements during wartime or any other time are not to be known by the outside world. My son was in a position in the military where we could know very little even when he was on land. It was so hard on me as a mother. My other twin son was going through some very stressful issues himself and two days after my son went off to boot camp, my other son left a note on my kitchen counter while I was at work and left home. It was many years before we had him back in our lives again. The stress of all three situations threw my body into a downward spiral. My pains began again but also I began to experience a multitude of physical problems.
I knew as an RN that emotional stresses can create all sorts if illness. My body got weaker and more fatigued. My pain in my hips and SI joints and neck increased. But through all of this the pain was pushed to the side by doctors and finally I was diagnosed with probable MS. Changes on my C-spine MRI is what led to this diagnosis. I was put on interferon injections and self injected weekly. As time passed the symptoms that were once thought as MS began to be questioned. I was taken off the interferon therapy. I went to another Dr who was able to clearly tell me that I did not have MS. and, though I was very relieved, I was also upset that I was back at ground zero.
Many years passed as I continued to go to doctor after doctor. My fatigue although tired was more muscular. I continued to have the same symptoms which led them to the diagnosis of MS, like frequent falls, balance issues, and severe muscle fatigue. But, the pain was getting out of control. In 2008 I had made a change in my job, and went to work at a very large hospital system in the Detroit area. Beaumont hospital in Royal Oak was the larger of the hospitals and my walking was getting worse. I tried to take steps up to my 8th floor office after my 15 minute walk in from the parking lot, thinking it would help with the fatigue I was feeling. This went on for years along with a possible diagnosis of Fibromyalgia. I did have inflammation of the SI joints as well as some fissures and bulging discs so I was also receiving LESI (lumbar epidural steroid injections.) This, along with occasional Vidodin seemed to help the pain. But It was never completely controlled. I also went through physical therapy over and over. There were days my boss would wheel me out to my car in a wheelchair because I couldn’t stand the pain. She had wanted me to go to the ER each time it happened but, I told her there was nothing they could do.
By December 2011, I went on one of multiple medical leaves, because I was physically unable to work. I was being treated prior to this, with Vicodin which seemed to help my pain but my doses were increasing and my liver enzymes were rising. I also continued with LESI’s. Drs were concerned about how high my liver enzymes were getting and switched me over to OxyContin which was sustained release. They wanted to remove the Tylenol in my medication. But I had been having too many highs and lows even with this pain medication as well as great fatigue and I could no longer feel safe driving a car. I was taken off all pain medication and put on Suboxone sublingual film to help prevent a physical withdrawal, and put me on “holiday” from my pain meds. They thought I would have some pain control with it but, I didn’t. This is what forced me into a medical leave again.
I went back to my pain clinic Dr and explained my situation. I had refused Fentanyl for months because I knew I would not be allowed to work as an RN on this medication. Finally I gave in. By the time I was increased to Fentanyl 50mcg I was beginning to feel relief. I also used 2 tabs of Norco 10/325 for breakthrough pain twice daily as needed. I continued to have LESI which continued to give me some relief of pain, but my doctors said I could no longer return to work. I was devastated. As hard as it was to work, I wanted to retire on my own terms and I finally realized this wouldn’t happen for me. I was put on permanent disability. I still had no diagnosis.
Finally I went back to my rheumatologist and told him something isn’t right and I’m getting worse. He said he suspected something but wanted to do some blood work first. I later received a phone call from Social Security who told me I was HLA-B27 positive. I was diagnosed at that time with Spondyloarthropathy, which he used simultaneously with the term Spondylitis. As an RN I knew this was an arthritis of the spine that many end up having back surgery for, but that was about it. I had no idea of the magnitude of pain and symptoms. Finally I was diagnosed in 2013, ten years later with Ankylosing Spondylitis. I had been told years prior when I went to see an Orthopedic surgeon for shoulder pain that my acromio-clavicular joints were fused. This is YE clavicular to shoulder joint. I later read on the SAA website that this is also a symptom of AS. I have had cervical spine fusion of four vertebra with bone grafting in May of 2014, for bone spurring which leads to fusion much of the time, but was caught when it was seen on MRI that I had compression of my spinal cord and a nerve root that left my left arm numb and tingling. The Drs felt the surgery would decrease my falls. It has. My equilibrium is off sometimes but this may be related to medication I’m on. I also began taking Embrel injections in 2013, which I continue. My last series of steroid injections into the spine have left little to no effect on my pain, and it continues to increase in my low back and hips. My hips are degenerated due to the disease and I was told I will need hip replacements eventually. I have also had knee surgeries and Drs. feel that my congenital heart defect, a bicuspid leaky aortic valve is likely related to the disease as well as my asthma that I have had since childhood. My Drs. think possibly my severe migraines may also be a complication of the disease.
I have just recently asked to try to wean off pain meds as they no longer seem to be doing much for controlling my pain and I have taken the first step down on my Fentanyl with little noticeable difference. I have been on narcotics for many years and know as an RN that this is not good, if I want to live a long life. At 53 there have been many days where the pain gets so bad I pray for God to just take me, because I can’t stand it anymore. I have always thought I was an extreme case, but have met so many on social websites for the Spondyloarthropathies that have AS and they have felt the same.
My wish is for a cure. I am an active member of the Spondylitis Association of America, and someday hope to hold some sort of fundraiser for the organization to help find a cure. I just haven’t felt good enough to do it yet. I would love to play an active role in teaching physicians more regarding the disease. No one should have to wait ten years for a diagnosis. And for me if I go back to when I first exhibited symptoms would be 43 years to a diagnosis. But I never actively tried until ten years ago.
My son exhibited symptoms at the same age that I did and the same complaints at 10 years old. I I mmediately took him to an ortho dr I worked with who ran blood tests and asked if my husband or I had AS. I told him no at that time because it was17 years prior to my diagnosis. Now it all makes sense. My son is doing well at 28 years old.
We should all become actively involved so that our children do not suffer with this debilitating disease. Please I urge you and your family members to go to www.spondylitis.org to become a member, receive their magazine subscription and offer this organization as your charitable contribution. We need a cure.
Michigan, United States of America