My AS experience and Self-Management Plan

DIAGNOSIS AND DENIAL
In 2001, I was diagnosed with Ankylosing Spondylitis (AS). I had graduated from the University of Western Ontario only 2 years prior with 2 Bachelor degrees and was in the early years of my nursing career at Markham Stouffville Hospital. The world was my oyster and I was in denial--who had time to slow down? Not me. What was this thing...Ankylosing Spondylitis? Could it be what was causing my lower back pain since Grade 9? Nah. I feel fine so I must be fine. I'm just a bit tired...all the time. It must be because of these 12 hour shifts.

As you can tell, health care professionals may not always make the best patients. We're used to being the ones who help others...the ones who have it all under control. I was obviously (but unknowingly) suffering from the Invincibility Complex--the same complex we are convinced has taken over the world's teenage population.

MY EXPERIENCE
This has been a difficult disease to cope with, particularly given my young age, Type A personality, and my persistent Invincibility Complex. I never thought that in my 20's I would ever need assistance with dressing, toileting, managing stairs, or even getting out of bed--but I did. Not all the time. Because of the stiffness associated with AS, I would need assistance (thanks Sis) for 2-3 days a week during an inflammatory flare-up and then I would not need assistance for a few weeks to a few months afterwards. The stiffness can be so severe that I would not be able to stand erect, and yet I could not even bend forward. Sometimes the stoop was mild where I would look like a young Hunchback of Notre Dame, and other times I was literally bent at a 90 degree angle staring at my beautiful toes for several hours up to a full day until the inflammation subsided.

Although my stiffness tends to be worse upon awakening due to the prolonged level of inactivity and immobility, the evenings have also become a painful time of day for me. Fatigue is a common complaint of patients with AS, occurring in approximately 65% of patients--for me it was no exception. Because I try to be active, fatigue is my largest frustration because it limits my activity and wrecks havoc on my motivation. I consider my fatigue to be moderately severe. Increased levels of fatigue are associated with increased pain, stiffness, and decreased functional capacity.

One reason that makes it difficult to cope with is that no one can tell you have a disease. Most people with AS look healthy and may appear to function relatively well. No one can see the persistent pain you are experiencing throughout the day, and no one sees how stubborn your body can be in the mornings and evenings when all you want to do is get out of the car or straighten up from rinsing your mouth out in the sink. People may notice you changing positions in your seat frequently, or may hear your back crack so often they ask you to leave the room (it's happened to me). They may think you are lazy because you are frequently fatigued. Or they may think you are a loner because you are depressed. It's hard to admit that you have a disease that forces you to change the way you are used to doing things, and it's hard to predict how others will relate to you after that. Although I now have an administrative position in the healthcare industry, I will admit that my primary ongoing concern is that my employer (regardless of the company) may assume I cannot perform my role or I would be a health liability to the organization. It is a fear that most people with chronic illnesses face.

THE MEDS
My Rheumatologist originally prescribed Voltaren to reduce my lower back stiffness and ease the constant dull pervasive pain nagging at my sacroiliac joints. The medication was effective for several weeks, but eventually the pain intensity returned. I was then prescribed Piroxicam which offered no relief. Indomethacin eventually provided effective pain relief by reducing my joint inflammation; however, the ache once again returned. Even the recommended maximum dosage could not provide the relief I needed to participate in even the most basic activities of daily living.

My Rheumatologist decided to prescribe Bextra to replace my Indomethacin, but the international drug warnings that started with Vioxx and trickled down to other Cox-2 inhibitors, ensured that Bextra would not remain part of my treatment plan. I was fortunate enough to be approved for Enbrel--a biologic therapy--which I started November 2004. Enbrel is a type of protein called a tumor necrosis factor (TNF) blocker that blocks the action of TNF, a substance your the immune system makes. It requires the person to take an injection below the skin twice a week. The company has just released a new dosage requiring only one injection each week. The medication became effective three months after initiating the treatment (which is anticipated by the pharmaceutical manufacturers of the drug) and I once again found relief. I was able to participate in recreational and daily living activites again without much stiffness. My only side effect was a common site reaction (redness, the emergence of small bumps, and itchiness). It was a small price to pay for regaining my independence and functionality again. I described it as "feeling like a normal person...like everybody else."

Unfortunately, at present, I do not have health benefits resulting in my inability to afford the Enbrel since February, 2006. The medication costs approximately $1600 each month. Without this medication the inflammation will return related to AS being an auto-immune disease. In other words the immune system loses its ability to recognize some tissue or system within the body as "self" and targets and attacks it as if it were foreign. Inflammation results in stiffness and pain at the affected area, and eventually reduced functional ability. Until I am able to afford Enbrel, I have returned to taking my remaining capsules of Indomethacin.

ALTERNATIVE TREATMENT
I purchased an EMPI Transcutaneous Electrical Muscle Stimulation (TENS) device for slightly under $800. I was fortunate enough to have employee health benefits that fully reimbursed the cost of the device. I had researched TENS machines as a non-medicinal treatment alternative for AS, and research was favourable for pain management. To achieve effective pain relief, I need to use a very high intensity (level 40-50) of electrical stimulation on the machine. Although this level can be intolerable for many, it is effective for me.
I have found massage and physiotherapy to be very effective in managing my pain and immobility. I went for a fabulous Swedish massage at a spa on April 2nd. The therapist was knowledgable about AS, and tailored the massage to provide me with the most therapeutic benefit. I am convincing myself to have a massage every 2 weeks--after all, who doesn't need pampering?

SELF MANAGEMENT
Exercise and stretching appear to be the only 2 non-pharmaceutical therapies that you can do independently to manage AS. I have always been physically active, and my physiotherapist has praised my active lifestyle for the current state of my mobility. I regularly attend the gym for weight training and aerobics classes, and I run several times a week for cardiorespiratory benefits.

Participating in the Arthritis Self Management Program has helped me understand my disease a lot more and how to manage the symptoms. Each week we had to create an action plan: during my first week I decided to start stretching. Experiencing a loss of flexibility made me feel older than I want to feel--it was a good motivator. I have always hated stretching. With respect to a physical activity, if it did not make me sweat, then I did not consider it beneficial. Watching my flexibility slowly slip away and the resulting disability was finally enough of a reason for me to engage in stretching. I even initiated an appointment with an Arthritis Society physiotherapist, Mary Aisen, at the St. Paul's L'Amoreaux Centre to educate me on stretching techniques. She took the time to thoroughly assess my health history, physical mobility and flexibility, and to educate me on stretching. I was very impressed by her comprehensiveness and patience, and the fact that she had previously been in my shoes as a Joints in Motion Training Team member.

My goal is to continue stretching every day, and to start participating in yoga and pilates classes at the gym. I plan to incorporate mountain biking as a way of cross training and strengthening different muscle groups that would benefit my running. This blog will allow me to communicate my training progress to you. I hope you have enjoyed reading about my personal experience with AS.