Tips for Managing the Chronic Pain of Ankylosing Spondylitis
Ankylosing Spondylitis is an apparently genetic condition. Its only symptom is pain, and it has no cure. It is classed as a form of rheumatoid arthritis that affects the spine and joints in the pelvic and sacroiliac areas.
Ankylosing Spondylitis (AS) is a systemic disease with symptoms in other parts of the body. As a rheumatoid arthritis, it is an auto-immune disease with connections to Lupus, Chron’s disease, Psoriatic Arthritis, and Scleroderma, at least in the sense that not much is known about it. (See http://www.spondylitis.org/ for a wealth of information on this condition!)
In AS, inflammation of the affected joints produces a plaque that will, in time, fuse the joints or spinal discs involved. Historically, this condition was called “bamboo back” because the fused discs looked like bamboo stalks. When it affects the upper spine, it can produce a stooped over appearance. If it affects the lower back and pelvic areas, it can create a stiff brittle stance.
But, more significant to the AS patient is the pervasive and chronic pain and fatigue. Since some joint fusion is inevitable, the most the AS patient can expect is early diagnosis and support in managing the pain and quality of life.
One Patient’s Experience : My friend, Mike, is in his late 60’s and has been treating for AS for the past 5 years. He had been an athlete, an equestrian, and a dynamic teacher. He had suffered back pain for over 40 years. The pain had been increasing in degree and duration, but he was experiencing deep fatigue and related depression.
Mike had tried painkillers, pain management, steroid injections, nerve cauterizations, massage, chiropractic readjustment, and prescribed narcotics – without more than temporary relief. He asked his General Practitioner to give it some focus and was referred to a leading rheumatologist.
Although the rheumatologist would order confirming blood tests, the doctor felt Mike’s joints and observed his posture and how his breathing expanded his chest. He then quickly described Mike’s history in detail without being told. The pain had begun when Mike, a white male, was 24. The pain was worse at waking and before sleep. It improved with exercise and movement.
The pain was characterized by sharp excruciating episodes with pain radiating in tangential nerves, tendons, and ligaments. He posited a family history of AS with ancestors suffering from spinal deformity and thoracic problems.
After such observations and an examination of x-rays and MRIs of the affected areas, doctors order an analysis of blood. The presence of HLA-B27 can be a confirming indicator. The presence of this gene does not assure the presence of Ankylosing Spondylitis, but there is a strong correlation between the presence of the gene in Caucasian males and the presence of Ankylosing Spondylitis.
Specifically: More than 75% if those with the gene do not develop AS. Of the Caucasians with AS, 95% show HLA-B27. Comparatively speaking, 50% of African Americans with the disease have the gene, and 60% of those with Mediterranean origins have the gene.
Because there is no known cure for AS, the most patients can explore is management and pain reduction.
- Surgery: Surgical joint replacement may be a solution for some few severely affected patients. Osteotomy may surgically remove bone overgrowth.
- Exercise: Physical activity can improve a patient’s range of motion. Water aerobics designed for arthritic patients, tai chi, and yoga work well in reducing pain and forestalling spread of the disease.
- Medications: Basic over-the-counter medications, such as ibuprofen, naproxen, and aspirin, reduce inflammation. Some of these meds can be prescribed in stronger doses. Cymbalta and other serotonin reuptake inhibitors seem to reduce related depression and to alter the perception of pain. To combat more serious pain, doctors may prescribe Disease Modifying Anti-rheumatic Drugs (DMARDs), such as methotrexate, Enbrel, or Humira. (Unfortunately, these drugs lower the immune system and can lead to kidney and liver disease as well as some form of cancer.) Finally, Tumor Necrosis Factor (TNF) inhibitors, like infliximab, block a protein that contributes to inflammation.
So, my friend Mike attends water aerobics for arthritic patients three times a week at the Y. He participates in a tai chi class once a week. He sleeps on a firm mattress and uses a C-pap machine to help with sleep apnea and deep breathing. He avoids tobacco and has reduced his caffeine intake.
Mike takes a Skelaxin, a prescription muscle-relaxant, and gabapentin, a nerve soothing neuralgic. He has a prescribed dose of naproxen available for serious pain. And, one every eight weeks, he receives an infusion of infliximab. (Medicare will currently cover an infusion of biologics like infliximab although it will not cover self-injectables like Humira or Enbrel.)
Mike understands the condition is spreading. He wrestles with the emotional acceptance of this prospect, but he feels he has made a major step in accepting a certain level of pain. He knows that, in time, he will be well under the influence of narcotic pain killers, but his doctor is pleased that he is resisting this in positive ways. On a scale of 1 to 10, with 10 being the worst pain, Mike’s pain is regularly at a 6 to 7; he has accepted the fact that his is his new normal . When his pain increases, he takes additional medication or consults his doctor.
Millions suffer from chronic pain, and some, like Mike, know the treatment will eventually kill them. But Mike is relieved to finally have an accurate diagnosis. He quickly points out that other forms of arthritis are more debilitating. He knows that his problem is relatively minimal compared to the excruciating pain of cancer patients.
Ankylosing Spondylitis can affect men or women – although it is most prevalent among Caucasian males. Since early diagnosis is to your advantage, if you fit this profile of back pain and fatigue, press your doctor for a more thorough diagnosis.