Impact of Axial Spondyloarthritis

09 February 2022 MedicAlert

Axial Spondyloarthritis, also known as Axial SpA or AS, is an arthritis that mainly affects the spine. Inflammation occurs along the spine where the ligaments or tendons attach to the bone. It usually starts at the bottom of the spine, at the sacroiliac joints. Axial Spondyloarthritis is the umbrella term and it includes Ankylosing Spondylitis as well as non-radiographic Axial Spondyloarthritis.

A diagram of the sacroiliac joint

The condition can get better over time or, unfortunately, much worse. In rare cases, some bones of the spine may fuse together. Unfortunately, there is no cure. Even though 1 in 200 people suffer with the condition, according to the National Axial Spondyloarthritis Society (NASS), 91% of the population has never heard of it. The symptoms can be quite debilitating and can affect everyday activities for the sufferer and their family.

Facts and figures about Axial SpA (AS)

In the UK:

More men are affected than women
About 220,000 adults have the condition
Axial SpA affects younger people with the average age of onset being just 24
People with Axial SpA (AS) can find support through NASS, the only charity in the UK dedicated to transforming axial SpA.

What are the symptoms?

Symptoms can vary in severity according to sufferer, but most people will experience one or more of the following:

Gradual pain in lower back and stiffness
Fatigue or tiredness
‘Flares’ – extreme moments of pain that can either come out of nowhere or the person can sense them coming. Flares are hard to manage and can last weeks or even months
Pain improves when being active but gets worse when resting
Early morning and night time stiffness and pain. The pain can be so bad at night time that the person has to get up and walk around
Pain in other parts of the body including ribs, knees, hips and shoulders
More prone to develop uveitis or iritis, inflammatory bowel disease (IBD), skin conditions, and problems with feet such as Achilles tendonitis and plantar fasciitis
Affected posture and, depending on how someone stands due to continual pain, it can cause the spine to bend.

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Treatments for Axial SpA (AS)

Exercise

Exercise is crucial to manage and control the condition and also beneficial for mental health and wellbeing.

"Exercise is the single most important thing you can do to help yourself. Axial SpA (AS) is a condition for life and during its course it may affect you differently at different times. The fitter and more flexible you are, the better able you will be to deal with your symptoms."

National Axial Spondyloarthritis Society (NASS)

Exercise improves your strength, flexibility and helps with posture. Keeping active also prevents stiffness and the long-term effect of fusing of the spine.

A woman swimming backstroke in a swimming pool.

Swimming uses a lot of muscles and joints, it strengthens the heart and lungs, and builds stamina. The water supports the weight of the body which makes it an excellent low impact sport. However, choosing the right stroke is important. Front crawl allows the body to stretch and remain extended and back crawl helps open the chest. Try to avoid butterfly and breaststroke as these can put pressure on the back and neck. Being in the swimming pool can also mean low impact stretching. Stretching is good for keeping the body supple and cycling, pilates and yoga are great examples of other exercises that will do this.

Always check with your physiotherapist before embarking on any form of exercise.

Physiotherapy

Planning an assessment with a physiotherapist after diagnosis is recommended. The physiotherapist will assess someone’s posture and flexibility. The physiotherapist can also educate on the condition, recommend stretching exercises and develop a daily exercise programme. Physios are a great source of support and can help guide someone through the complexities of AS.

Medication

Like all chronic conditions, each sufferer will manage their pain using certain combinations of medication. There are many different types of medication that can help with the symptoms, including:

Analgesics (painkillers). Reduce pain and are often used together with other medications.
Non-steroidal anti-inflammatory drugs (NSAIDS). Reduce inflamation as well as pain. Again, they are often used alongside other medications.
Corticosteroids (steroids). Effective in controlling inflammation but can cause side effects in the longer term. While they can be useful for pain and inflammation in peripheral joints like your knees, ankles and feet, they are not used for back pain.
Disease modifying anti-rheumatic drugs (DMARDS). Reduce pain, stiffness and swelling in people who have symptoms in periperal areas such as the hips, knees, ankles or wrists. There is no evidence DMARDs will help with the pain in the spine (axial disease).
Nerve pain medication. Specifically help people who suffer from long term nerve pain. This type of pain is caused by some damage to or pressure on nerves. Amitripyline is the most commonly used medication in this group.
Biologic therapy. There are two types of biologic therapy (anti IL 17A and anti TNF therapy). Both work by reducing the inflammation produced by the body. New types of biologic therapy there are in development and going through clinical trials.

Hydrotherapy

As mentioned before, being in the water is a great way to stretch and exercise without putting too much strain on the body. There are many venues in the UK that offer hydrotherapy sessions for people with Axial SpA (AS). These sessions are in specialist warm water pools and can be tailored to your needs. Hydrotherapy is available on the NHS.

Complementary treatments

These treatments can never halt the progression of the condition but can temporarily alleviate some of the symptoms. Always check with your GP before beginning these treatments.

Acupuncture – relieves the pain by the insertion of tiny needles in the body that send pain messages to the brain and release endorphins.

Aromatherapy – when certain oils such as lavender are rubbed into the skin, they can help reduce anxiety.

Impact on families living with of Axial SpA (AS)

95% of people are aged less than 45 when symptoms start and the impact for this young demographic is huge. The average age of onset of the condition is 24, so pretty much the time when you start a career, have a healthy social life, embark on relationships and possibly start a family. Watching a loved one in pain is distressing, more so as you often cannot do anything to help.

“I started having problems in my early 20’s with not sleeping due to pain and finally got diagnosed at 35. The symptoms can vary for me. It's mostly severe back pain and fatigue but also affects my feet and eyes. I have iritis in my eyes and suffer with IBS. AS makes me very fatigued but the job I do keeps me mobile and active which stops the fusion of the spine setting in. Having friends who understand my condition helps a great deal.”

Gary, 49, Carmarthen

Social impacts

Due to sudden flare ups or a new ache or pain, plans with family or friends could change at the last moment. This can be disappointing for all the family and depending on the person, AS can limit activities available to them. Fun activities that cause a jolt to the body may need to be avoided. Eating out can cause anxiety as many people with AS also suffer with IBD. The person may have to sleep during the day as they are tired from night time pains which keep them awake.

A person with AS may feel they are letting down their family by not being able to help with every-day tasks due to the pain and can often believe their loved ones are doing too much to compensate.

Personal relationships can be affected with intimacy problems. Sex can be painful and very infrequent if the person is tired. It’s always recommended to communicate with each other about these issues.

Employment impact

A change in an employment situation, as the current job is too physically demanding, could impact the family financially. NASS has estimated that between 10 – 40% of people have to give up work and tend to retire 9.5 years earlier than the general population. It is therefore so important to talk to your employer so they can possibly arrange flexible working, make adjustments to your working environment and inform the occupational health representative so as to arrange a workplace assessment.

Managing life with Axial SpA (AS)

There are many coping mechanisms or ‘life hacks’ recommended by people and families living with the condition.

“Understand the person doesn’t want it and will hate alterations on plans. Build in extra time to complete tasks and activities. Don’t plan day after day of activities. Gary is able to do most activities but knows when to stop and then build in recovery time.”

Alex, Gary’s wife, Carmarthen

Listen to your body

Most people with AS can judge when a ‘flare-up’ is on its way or when fatigue will set in. Be kind to yourself and do not ignore the signs as recovery may take longer.

Tell you friends and colleagues about AS

Axial SpA (AS) is a common but unknown condition. If friends and colleagues are not informed or educated about this debilitating condition then they won’t ever understand. They would absolutely want to support you and understand when you are limited in your availability due to your symptoms. Telling people can often reduce anxiety and the feeling of guilt of letting people down.

A group of young people talking.

Consider a job that keeps you active and mobile

There are jobs that may be too physically demanding for people with AS but it is also worth considering finding a job that does keep you moving. Sitting at a desk all day is not good for mobility so getting up and stretching regularly is imperative.

Keep an eye on your diet

There is no link to certain foods making AS better or worse but having a low-fat nutritional balanced diet can help the person keep to a healthy weight as being overweight will cause strain on the back, spine and joints.

Don’t drive for long periods of time

Being in the same position when driving can cause stiffness in the neck and back. If possible, share driving duties or break up journeys with frequent stops.

Join forums and make friends

Talking to other AS sufferers can help with your experiences with the condition. You can access support, advice and make friends. Becoming a member of the NASS community forum or local support groups can help you feel less isolated.

Join exercise classes

Exercise is so important in managing the condition so finding an exercise you both enjoy and is suitable for your ability is really important. Think about how low impact exercise would be beneficial or exercise that incorporates stretching. Be aware that some Covid restrictions may still be in place.

Benefits of a MedicAlert membership for people with Axial SpA (AS)

The differing combinations of medication that people are on vary massively with the condition. MedicAlert stores all medical information in one place which is invaluable in case of an emergency especially as your medications may not be able to be taken with other drugs. For example, NSAIDS should not be taken with drugs such as warfarin (blood clots) or diuretics (high blood pressure). Having a full medical record will prevent a possible problem in an emergency. Equally, if you suffer from a sudden flare up and are in uncontrollable pain, you may be unable to communicate.

First responders can access your records by first recognising the Medical ID jewellery, which will be engraved with your most vital details, and then referencing the unique membership number when using the 24/7 emergency line in order to access your full information. This will allow them to administer appropriate treatment without delay, avoiding fatal errors or causing you further complications.