Ankylosing spondylitis (AS) is a type of arthritis that mainly affects the back. It occurs in the joints of the spine, leading to pain and stiffness. Ankylosing spondylitis affects people in different ways – some people can almost forget they have the condition, while for others it can have a big impact on their quality of life. Sometimes joints other than those in the spine can be affected too. Occasionally, other parts of the body may also be affected.
Other possible symptoms include:
Ankylosing spondylitis can affect anyone, although it’s more common in young men and most likely to start in your late teens and 20s. It’s linked to the genes we inherit, but having ankylosing spondylitis doesn’t mean you’ll definitely pass it on to your children.
There is no specific test for ankylosing spondylitis, so your doctor will base the diagnosis on:
X-rays can show changes in the spine as the condition develops but aren’t always helpful in the early stages so magnetic resonance imaging (MRI) scans are often used instead.
The healthcare professionals in your rheumatology department can help you find treatments that are best for you. These will often include:
These are given as tablets or injections to relieve pain, reduce inflammation or, if other treatments haven’t helped, to modify the condition itself.
These are very important to keep your spine strong and flexible.
Surgery is very rarely needed but may be very helpful if your hip joints are badly affected. Back surgery is even more uncommon and only used if your spine has become very bent
In the early stages, ankylosing spondylitis is likely to cause:
Some people first notice problems after a muscle strain, so the condition can sometimes be mistaken for common backache. However, stiffness that lasts at least 30 minutes in the morning helps to distinguish ankylosing spondylitis from simple back pain. It may also occur after rest, or it may wake you in the night. The stiffness can be eased by exercise or movement.
You may also have neck, shoulder, hip or thigh pain, which is often worse when you’ve been inactive for a time, for example if you work at a computer. Some people have pain, stiffness and swelling in their knees or ankles. In psoriatic spondyloarthritis, the smaller joints of the hands and feet (fingers, toes) may be affected. For some people, especially children and teenagers, the first signs may be in their hip or knee rather than in their back. Inflammation can occur at any point in the body where tendons attach to bone (enthesitis), for example at the elbow and heel. The inflammation that causes these symptoms usually comes and goes, so the degree of pain and stiffness can vary over time. Some people may also find their symptoms are worse than other people’s – if the condition is mild and only affects the sacroiliac joints, it may go almost unnoticed, but if the spine is affected, it can cause difficulty with activities that involve bending, twisting or turning. Other possible symptoms include:
This makes it uncomfortable to stand on a hard floor. Inflammation can occur at the back of your heel where your Achilles tendon meets your heel bone, or in the tendon in the arch of the foot, which causes pain.
When the whole digit is swollen it’s known as dactylitis.
This makes sitting uncomfortable.
Chest pain or a ‘strapped-in’ feeling that comes on gradually – If your spine is affected at chest level (the thoracic spine), it can affect movement at the joints between your ribs and breastbone. This makes it difficult to take a deep breath. Your ribs may be very tender, and you may feel short of breath after even gentle activity. Coughing or sneezing may cause discomfort or pain.
The first signs of this are usually a red (bloodshot), watery and painful eye, and it may become uncomfortable to look at bright lights. If this happens to you or if you develop blurred vision, it’s important to get medical help within 24–48 hours. The best place to go is an eye casualty department but this might not be at your local hospital. Your GP surgery, local A+E or your optician will know where the nearest eye casualty department is. Treatment is usually with steroid eye drops, which are generally very effective. Some people get recurrent attacks, but they’re extremely unlikely to cause permanent damage to your eyesight if they’re treated quickly.
People with ankylosing spondylitis can develop bowel problems known as inflammatory bowel disease (IBD) or colitis. It’s a good idea to tell your doctor if you develop diarrhoea for more than two weeks or begin to pass bloody or slimy stools. You might be referred to a bowel specialist (a gastroenterologist).Symptoms of IBD can vary, but it can usually be treated successfully with medication.
People with ankylosing spondylitis may experience tiredness caused by the activity of the condition, anaemia or sometimes depression and frustration associated with the condition.
Ankylosing spondylitis and the related conditions are quite variable and the longer-term outlook can be difficult to predict. They can cause a lot of pain, although treatment will help to ease this. You may have times when the symptoms become worse and other times when you find it easier to cope with the pain and stiffness and can get on with your life. Ankylosing spondylitis can sometimes make you feel generally unwell, lose weight and tire easily.
Most people with a spondyloarthritis have some stiffening in their spine, usually in their lower back. This can be painless and may not interfere with physical activity because your neck, hips, limbs and the upper part of your spine can remain quite mobile. However, if more of your spine stiffens up or your knees or hips are affected, you may have more difficulties with mobility. Many of the treatments described in the rest of this booklet can help to prevent these mobility problems and improve the pain of arthritis.
Very rarely, there may be complications affecting the heart, lungs and nervous system. The valves in the heart may leak, which can put it under more strain. And long-term inflammation and tissue scarring in the lungs can decrease rib movement, which means you can’t take in a full breath. Very rarely, the top of the lungs may become scarred. Fewer than 1 in 100 people with ankylosing spondylitis have these problems, and they are even less common in the other types of spondyloarthritis. Even so, if you smoke, it’s extremely important to try to stop because smoking is likely to add to any heart or lung problems.
People with ankylosing spondylitis, especially those who have had the condition for a long time and whose vertebrae have fused, are at increased risk of spinal fractures following a fall or car accident. For example, spinal fractures can cause nerve damage, so it’s important to tell any doctor treating you following an accident that you have ankylosing spondylitis, especially if you have new unexplained pain in your spine or new weakness, numbness or tingling in your arms or legs. The fracture may not show easily on x-rays, so you may need an MRI or computerized tomography (CT) scan.
Some people with ankylosing spondylitis develop osteoporosis (thinning of the bones), and it’s important that this is treated. Your doctor may suggest you have a bone density (DEXA) scan to check for this
Most back pain isn’t caused by ankylosing spondylitis. However, the symptoms, especially in the early stages, can be very similar to more common back problems. Because of this, many people put up with the pain for some time before seeking help. When you first see your doctor, there may be little to show whether the problem is ankylosing spondylitis or some other, more common, back problem. Unfortunately, ankylosing spondylitis may even be misdiagnosed at first. Usually, ankylosing spondylitis is diagnosed by rheumatologist rather than a GP.
No specific test will confirm you have ankylosing spondylitis, so diagnosis involves piecing together information from different sources, including:/p>
Several different kinds of drugs can be helpful. Painkillers and non-steroidal anti-inflammatory drugs (NSAIDs) are usually the first choice of treatment, and most people with ankylosing spondylitis will need to take these at times. For people who have more severe symptoms that can’t be controlled by anti-inflammatories, a number of drugs are available which can help to reduce pain or limit the effects of the condition.
Simple pain-relieving tablets such as paracetamol or co-codamol are often very helpful. They can be taken regularly and are particularly useful if taken just before activity to keep your pain to a minimum. It’s best not to wait until you’re in severe pain before taking them.
There are a wide range of NSAIDs that can reduce pain so you can get on with your daily activities and your exercise routine. You’ll probably need to take these during bad patches, and some people may need them over a longer period. Some tablets are made in a slow-release formulation, which can relieve night-time pain and morning stiffness. NSAIDs are also available as gels, which you can rub over the painful area. Like all drugs, NSAIDs can sometimes have side-effects, but your doctor will take precautions to reduce the risk of these, for example, by prescribing the lowest effective dose for the shortest possible period of time.
NSAIDs can cause digestive problems (stomach upsets, indigestion or damage to the lining of the stomach) so in most cases NSAIDs will be prescribed along with a drug called a proton pump inhibitor which will help to protect the stomach.
NSAIDs also carry an increased risk of heart attack or stroke. Although the increased risk is small, your doctor will be cautious about prescribing NSAIDs if there are other factors that may increase your overall risk – for example if you smoke or have circulation problems, high blood pressure, high cholesterol or diabetes.
Drugs such as sulfasalazine and methotrexate can be helpful for arthritis in the joints of your arms and legs, although they’re not usually effective for spinal symptoms. These are given to prevent or reduce joint damage rather than just controlling pain. They are slow-acting so you won’t notice an immediate impact on your condition, but they can make a big difference to your symptoms over a period of time. When taking DMARDs, you’ll need regular check-ups and blood tests to monitor their effect.
Biological therapies (anti-TNF drugs) are newer treatments that can be very effective for ankylosing spondylitis and for non-radiographic axial spondyloarthritis. A number of anti-TNF drugs are currently available for these conditions – including etanercept, adalimumab, certolizumab pegol and golimumab.
They can only be prescribed by a rheumatologist and are given as an injection under the skin, which you can learn to give yourself. Biological therapies aren’t suitable for everyone and can only be prescribed if your condition can’t be controlled with anti-inflammatory drugs and physiotherapy.
The effect of anti-TNF drugs is monitored, and you’ll need to complete questionnaires regularly which assess how active your disease is and how well you’re responding to treatment.
Steroids can be used as a short- term treatment for flare-ups. They’re usually given as an injection into a swollen joint or as a slow-release injection into a muscle. They can also be used for painful tendons, for example at the heel, although they won’t be repeated too often as they may cause tendon weakness. Occasionally, you may be given a course of steroid tablets (prednisolone). While these treatments can be very effective at improving pain and stiffness, you may develop side-effects if you use them for long periods (for example weight gain, bruising or thinning of the skin, high blood pressure, high blood sugar, infections and osteoporosis).
If you develop eye inflammation, it’ll usually be treated with steroid eye drops. In more severe cases, steroids may be given as tablets or as an injection into the eye.
Physiotherapy is a very important part of the treatment for ankylosing spondylitis. A physiotherapist can put together a program of exercises that will increase your muscle strength and help you to maintain mobility in your spine and other joints. It’s especially important to exercise your back and neck to avoid them stiffening into a bent position.
A physiotherapist will advise you on how to maintain good posture and may be able to offer you hydrotherapy. This involves specific exercises for the spine, hips and shoulders which you do in a special warm-water pool. Many people with ankylosing spondylitis find this therapy helpful and continue their program at their local leisure pool or with their local National Ankylosing Spondylitis Society (NASS) group.
Bed rest is certainly not recommended as this will speed up the stiffening of your spine. However, if you’re in intense pain and it’s extremely difficult to exercise, then you may need to treat the pain first. You should start slowly and gradually build up the amount and intensity of exercise you do. Trying to do too much exercise too soon is likely to make your pain worse. There’s a tear-off exercise section at the back of this booklet which includes some stretches to help improve strength and flexibility. Try to do them once a day.
Your physiotherapist will be able to plan an exercise program to suit your particular needs. Over time, you’ll need to exercise regularly to get the best from it. You may find that stretching exercises after a hot shower or bath are especially helpful in easing morning stiffness.
NASS groups offer regular exercise classes, run by physiotherapists, at various centers around the country. The classes are a good opportunity to meet other people with ankylosing Spondylitis and take part in specific exercises that will help your condition. NASS can also provide information about gym-based exercise, an exercise DVD and mobile app. Any exercise that you enjoy, for example dancing, swimming or gardening, will help in maintaining your mobility.
Contact sports (such as rugby, hockey or basketball) aren’t generally recommended if you have advanced disease as your joints and spine may be more easily injured, but there are plenty of other activities that are suitable. If you enjoy competitive sports, volleyball and badminton are both low-impact. Pilates, yoga and tai chi may also be useful as both can help with posture and flexibility. NASS have detailed information on exercising when you have ankylosing spondylitis, and you can ask your physiotherapist for advice if you’re in any doubt about a particular activity.
Swimming is one of the best forms of exercise because it uses all muscles and joints without jarring them. If you have limited neck movement, breaststroke and front crawl may become more difficult, and if you swim with your head up it can make neck pain worse. Using a snorkel can be helpful. Speak to your physiotherapist for advice if you have discomfort when swimming, as a different stroke or modification to your technique can often help. As an alternative to swimming, ask for a program of exercises you can do in the pool.
No particular foods have been found to make ankylosing spondylitis either better or worse. However, it’s sensible to eat a balanced diet and to keep to a healthy weight. Being overweight will increase the strain on your back and other joints.
It’s also a good idea to make sure you get enough calcium and vitamin D, which are important for the health of your bones, because people with ankylosing spondylitis have an increased risk of osteoporosis.
Many diets have been recommended for people with ankylosing spondylitis, including avoiding certain food types. There’s no convincing evidence that these work, and there’s a chance that you may make your health worse by missing out essential nutrients. If you’re keen to try any of these diets it would be a good idea to discuss it with a dietitian or your doctor first.
Most people will experience a flare-up of their arthritis at some time, when some or all of their joints become more painful and stiff. You may also feel tired and generally unwell. These flare-ups can last from a few days up to a couple of weeks and can make you feel completely exhausted. Over time, you’ll probably find treatments that prevent or limit the flare-ups you experience. You’ll also become better at coping with them if and when they occur. Talking with other people who have ankylosing spondylitis can be a good way of picking up tips for coping with flare-ups.
Hot and cold treatments can be useful for pain relief. Try using a hot-water bottle or wheat pack, taking care to make sure that you don’t apply them directly to your skin. Any form of heat treatment should be comfortably warm to prevent you from burning yourself. Cold packs (for example an ice pack or bag of frozen peas) wrapped in a damp cloth may also help if applied to a particularly inflamed area. Check your skin regularly to make sure the packs aren’t causing irritation.Some people find that using a TENS (transcutaneous electrical nerve stimulation) machine can help to ease pain. A TENS machine is a small electronic device that sends pulses to your nerve endings via pads placed on your skin.
It produces a tingling sensation and is thought to alter pain messages sent to the brain. TENS machines are available from pharmacies and other major stores, but a physiotherapist may be able to loan you one to try, or suggest where you might be able to hire one, before you decide whether to buy. Additional pain relief and anti-inflammatories will also help with pain relief, as should short-term rest and gentle stretches. Massage may be useful too.
Contact your doctor or your rheumatology department for advice or to arrange an early review if you’re struggling.
Tiredness and night pain can be problems if you have ankylosing spondylitis. They’re often caused by inflammation, but they may also be a result of anaemia or loss of sleep caused by night-time pain. Whatever the reason, it’s important that you try to get a good night’s sleep.
A medium-firm bed will be more comfortable than one that’s too soft, although the mattress should have some give in it so that it moulds to the shape of your spine. Even when ankylosing spondylitis isn’t particularly painful, it’s important to make sure your mattress provides enough support to prevent any tendency for your spine to bend. When you lie on your side your spine should be straight, and when you’re on your back it should keep its natural ‘S’ curve. Try to use as few pillows as possible so that your neck stays in a good position. Some people find memory foam mattresses, mattress toppers and pillows helpful.
If pain is a problem at night, heat may help. Try a hot bath before going to bed, or use a hot-water bottle, wheat bag (which you can heat in a microwave) or electric blanket. A hot bath or shower helps to ease morning stiffness.
If you smoke, the best thing you can do for your health is to try to stop. This is easier said than done, but help is available that makes it more likely that you’ll be successful. Your hospital or GP will be able to direct you to a local service that can offer support. Smoking can be particularly damaging because ankylosing spondylitis can reduce the movement of your rib cage when you breathe, making smoking-related lung damage more disabling and dangerous. People with an inflammatory arthritis such as ankylosing spondylitis are also at greater risk of heart disease, and smoking further increases this risk.
Ankylosing spondylitis can cause your spine to become stuck in a bent position, so it’s important to pay special attention to your posture. You can check it by standing up as straight as you can against a wall – seek advice from a specialist physiotherapist if you’re concerned about your posture.
Hardback, upright chairs or straight-backed rocking chairs are better for your posture than low, soft, upholstered chairs or sofas. Try using a cushion behind your lower back to give extra support and help you keep good posture. Don’t stop or stretch across a desk or bench. Make sure your seat is at the correct height and don’t sit in one position for too long without moving your back. A lumbar support and/or seat wedge may be useful.
A physiotherapist can provide ergonomic advice, for example on seating, and guidance on exercise to help you maintain a good upright posture.
If you get an opportunity and you’re physically able to do this, lie on your back on the floor sometime during the day. This will help stretch out the front of your hips and improve your posture. When lying on your back use pillows to support your head, but try to keep the number of pillows to a minimum. If your neck relaxes more as you rest, try removing one pillow at a time. Don’t place a pillow under your knees – stretching your knees out fully helps to maintain flexibility.
Sex may be painful if you have inflammation in your sacroiliac joints or lumbar spine and lack of mobility in the hips can be a problem. Try taking some painkillers beforehand and experimenting with different positions.
Ankylosing spondylitis can also make you feel tired, so it’s important that your partner understands how your condition affects you. Good communication is the key to preserving an active sex life and counseling can sometimes be helpful for both partners. It’s fine to use the contraceptive pill if you have ankylosing spondylitis, but you should tell your doctor that you take it. Usually, pregnancy doesn’t present any special problems for either the mother or baby, though the symptoms of ankylosing spondylitis may not ease during pregnancy, as they do in some other types of arthritis.