Living with Ankylosing Spondylitis - Some tips and preacautions for patients with AS
If you have physical limitations due to advanced AS, there are many devices to help perform daily tasks: walking canes, special chairs and desks, special shoes, and devices that assist in putting on socks or stockings and shoes, or for scratching or applying soap on the back, etc.
• Always wear a good pair of skid-resistant shoes.
• Use grab bars in the shower and toilets, shower seats, raised toilet seats, and floor lighting at night.
• Avoid slippery surfaces and loose carpets.
• It is important to sleep on a firm bed to maintain a good resting posture at night. You should preferably make a habit of sleeping on your back, to prevent the hip joints and the back from becoming bent. Avoid a pillow under your knees because that will increase the tendency to muscle and tendon shortening.
• Avoid a saggy mattress or a waterbed. A suitable board (made of plywood or chipboard) can be put between the mattress and the bed frame to make the bed more firm.
• Avoid using a pillow if possible, or use one just thick enough to allow a horizontal position of the face to prevent pain from overextension of the neck.
• You should only lie on your side for short periods, if possible.
• You should also practice lying prone (with the face down), e.g. for 5 minutes or more before getting out of the bed in the morning, and also before going to bed at night. Or you can lie on your back across your bed with your legs over the side and knees bent.
• People with AS need to practice good posture habits at all times, and should be taught about dynamic, resting, and occupational postures.
• Be aware of how you are standing, and try to maintain an erect tall posture, with the spine kept as straight as possible.
• Avoid any tendency to slump forward.
• Splints, braces and corsets are generally not helpful and are not advised. Some form of bracing may be necessary on rare occasions, e.g. after injury to the back or neck, but only on the recommendation of a doctor who is experienced in the management of AS patients.
• Perform appropriate muscle-strengthening exercises regularly, as advised by your doctor.
• Analyze your habitual and work postures and modify your working positions to maintain a good posture. For example, a drafting table with tilting work surface may be better than an ordinary office desk for writing and reading, and avoiding stress on the neck.
• Avoid physical activity that places prolonged strain on your back and neck muscles, and prolonged stooping or bending.
• Alternate between sitting and standing positions to perform jobs that take a long time to finish.
• Maintain a good posture while sitting, and avoid sitting for prolong periods, especially in low soft sofas and chairs.
• During your mid-day break at work, lie flat for a few minutes, and do some corner push-ups to stretch the back. Try to lie face down on your stomach for part of the time.
• A daily routine of deep breathing and spine motion/stretching exercises may minimize the fusion, and at least preserve better posture. Do deep breathing exercises at frequent intervals during the day. Thus proper sitting, sleeping, walking, and working positions, coupled with appropriate exercises, help maintain good posture and chest expansion. Because hip and shoulder joints are often affected, you should exercise the range of motion of these joints even before you observe any symptoms or limited motion there.
• People with AS generally have a very fulfilling and productive life. You can raise children just like anyone else because the disease usually does not interfere with family life.
• Fertility, pregnancy, and childbirth are usually normal.
• Although pregnancy does not usually affect the symptoms of AS, there may be restrictions on certain kinds of drug therapy during pregnancy and breast-feeding. You should discuss the use of any drug at these times with your doctor.
• Problems with family life may sometimes arise as a result of severe back pain, spinal deformity or limited spinal mobility; especially in women who have severe involvement of the hip joints with marked pain and limitation of joint movement. You should discuss these problems with your doctor. Patients with severe hip involvement benefit from total hip joint replacement surgery.
• A very useful and informative publication titled Straight talk on spondylitis, published by the Spondylitis Association of America, is highly recommended for additional advice. It also discusses housework, dressing and grooming, child bearing and child care.
Sports and recreational activities
• Sports and recreational activities that encourage good posture as well as arching of the back (extension) and rotation of the trunk are recommended. These include walking, hiking, swimming, tennis, badminton, cross-country skiing, and archery.
• Volleyball and basketball (with specially adapted rules) are excellent sports for people with AS as they combine movement with stretching. However, not everyone can tolerate jarring activities.
• If you have neck involvement you need to be more careful, and follow safety instructions.
• Sports activities that require prolonged spinal flexion, including golfing, bowling, and longdistance cycling, may be inadvisable.
• Body contact sports (such as boxing, rugby, soccer, American football, and hockey), and downhill skiing, are also not recommended because of their greater potential for injury.
• Stationary bike exercises are good, but the handlebars must be properly adjusted so that you do not lean forward while exercising. This exercise is especially good for general cardiovascular conditioning, strengthening the leg muscles, and exercising the hip and knee joints.
• Aerobic exercises with machines that enhance back, leg, and shoulder extension are helpful, but you should avoid undue stress on the neck.
• You may find difficulty driving if you have impaired mobility of your neck. In particular, it may be difficult to back the car into tight parking spaces because you cannot turn and twist your back and neck to look behind you.
• Special wide-view mirrors fitted to the car can be very helpful. Have some practice sessions driving and backing up the car in an open area to become comfortable using these mirrors. A small hand mirror may be of use in special situations in avoiding ‘blind spot’.
• Use seat belts and head restraints so that sudden slowing or stoppage does not jerk the spine, including the neck. Remember that the stiff neck of an AS patient is more vulnerable to injury than a normal neck. The top of the car seat’s head restraint should be level with the top of the your head, and the restraint should be adjustable and as close to the back of your head as possible.
• Avoid bucket seats.
• A disabled driver parking permit may be appropriate for anyone who can’t walk very far, but this is usually not a problem for most people with AS.
• If you have a painful and stiff spine, and have difficulty driving a long distance, stop after an hour or two at some appropriate place, and get out of the car to stretch your back and walk around for a few minutes.
• The Ankylosing Spondylitis International Federation (ASIF) has published a booklet for drivers with AS.
Impact of AS on employment and earning capacity
• Most people with AS are able to cope well, continuing a very productive and active lifestyle.
• Your employer’s tolerance for a flexible work schedule or a working environment adapted to your needs can have a great impact on whether or not you are able to get or keep a job. Read the chapter ‘Staying employed’ in the book Straight talk on spondylitis for more information.
• It may be helpful to alter your positions at work, e.g. use short rest periods to perform back stretching exercises during work hours, especially if your work involves prolonged sitting or standing. This can be arranged on consultation with the employer.
• Avoid prolonged stooping and heavy lifting; the work surface should be at a proper height to avoid bending.
• If your current job involves excessive strain on the back because you have to work in a cramped or bent position, you may have to think of a change of job. Vocational rehabilitation agencies are available to provide guidance.
• In a Norwegian disease outcome study of 100 people with adult onset AS, just over half were employed in full-time work after a mean disease duration of 16 years. Stopping work was associated with low levels of education, female sex, recurrent acute iritis, bamboo spine, and the presence of other concommitant non-rheumatic diseases. After more than 20 years of disease, more than 80% of the people surveyed still complained of daily pain and stiffness, and more than 60% needed to take their anti-rheumatic medications daily.
• In the past some people with AS used to get so stooped that they could not even look straight ahead. Some forward stooping of the neck and curvature in the upper back is still commonly observed after many years of the disease. Looking physically different from the rest of the population can present psychological problem, but most people are able to come to terms with this.
• Severe disease that results in complete spinal fusion in bent position and severe limitation of chest expansion, especially when there is also contracture of the hip or shoulder joints, may shorten life span because the function of the heart and lungs may be adversely affected and there is a greater risk of spinal fractures.
Health-related quality of life
• Health-related quality of life is based on your perception of the net effects an illness has on your life. It is commonly based on your symptoms, physical functioning and ability to work, psychosocial functioning and interaction, untoward effects of treatment, and direct and indirect medical and financial costs.
• Although people with AS are troubled with pain, stiffness, and limited spinal mobility, most of them remain in employment. A recent study at a rheumatology referral center in Germany indicates that people with AS have a degree of pain, disability, and reduction in well-being similar to patients with rheumatoid arthritis, a more severe type of arthritis. However, such referral centers are likely to see patients with more severe disease, so their results many not apply to everyone with AS.
• In a recent survey of 175 AS patients (68% male, mean disease duration of 23.7 years, mean age 51 years) the most common quality of life concerns were about stiffness (90%), pain (83%), fatigue (62%), poor sleep (54%), appearance (51%), side-effects of medications (41%), and concern about the future (50%). Few patients in this survey reported problems with social relations or mood.
• There are many recently published journal articles on employment, disability and quality of life of patients with AS. See ‘References and further reading section.
Depression is not uncommon in people with any chronic painful illness that impairs quality of life, and that includes AS. Depression is a treatable disease that has many underlying causes, and some individuals are genetically prone to it. Symptoms of depression include:
• loss of pleasure in activities that were once enjoyable
• persistent feeling of sadness, emptiness, decreased energy, tiredness, and anxiety
• frequently feeling helpless, worthless, guilty, and hopeless, or feeling irritable and restless
• disturbed appetite (loss of appetite or tendency to overeat)
• disturbed sleep (difficulty sleeping, waking up too early, oversleeping, sleeping too little or too much)
• difficulty in concentrating, thinking, remembering, or decision-making
• sometimes persistent physical problems (e.g. headache, abdominal pain) not responding to treatment
• thoughts of ending life by committing suicide. If you have any of these symptoms you should discuss them with your doctor so that appropriate treatment can be provided.
Hope you will find this article helpful in everyday or professional life.