Raising awareness for Ankylosing Spondylitis is important to me because a very close friend lives with it daily, and I’ve followed her story for many years. In fact, throughout our 21 years of friendship I have never known her not to have back pain. I hope this blog, written alongside Lisa’s personal account, helps other sufferers and therapists recognise the symptoms quicker, and also how to positively change a sufferers life with treatments such as Pilates and Massage.

What is Ankylosing Spondylitis?

Ankylosing spondylitis (AS) (ank-ee-lo-zing spon-dee-li-tus) is a type of arthritis that mainly affects the back, by causing inflammation in the spine. This can cause stiffness and pain in the back, rib cage and neck. It generally affects people in their late teens or 20s.

“My story with Ankylosing Spondylitis started around 12 years ago. I started getting sciatica-like pains and lots of aches, and extreme fatigue. I had also got to the stage that I was bed bound around once a month for at least a day or two, if not more.”

What are the Symptoms?

In the early stages, ankylosing spondylitis is likely to cause:

• Stiffness and pain in the lower back in the early morning that lasts at least 30 minutes and then eases through the day or with activity.
• Pain that wakes you at night.
• Pain in one or both buttocks, the backs of the thighs, and stiffness and swelling in the knees or ankles, fingers and toes.
• Difficulty with activities that involve bending, twisting or turning.
• Tenderness at the base of the pelvis, which can make sitting on a hard chair uncomfortable
• Inflammation of the bowel.
• Fatigue that does not improve with sleep or rest.
• Depression and anxiety.

“It is quite unpredictable living with AS. I never know when it is going to flare up. I can have lots of fun things planned and have to cancel them all due to the pain or the chronic fatigue that comes with it. I feel that most people don’t understand the condition, as one day you can walk around fine and the next day you can’t move at all. It has affected my work as I have had very unsympathetic managers who were unwilling to research the disease. I feel it knocks your confidence a lot and makes you feel very anxious about normal situations. It is very easy to go into dark and depressive states, normally due to the lack of sleep and horrendous pain”

How is AS Diagnosed?

Symptoms of AS can be like more common back problems, especially in the early stages. Because of this, many people put up with the pain for some time before seeking help. Common backache often comes in short and painful spells. But the pain from AS is likely to be long lasting. AS is usually diagnosed by a rheumatologist, these are doctors who specialise in conditions affecting the joints, bones and muscles. A blood test will show up any inflammation.

“I went to the doctor and was told it was just Sciatica and that it will disappear in time. When it wasn’t just going away, I went back and saw another doctor, who told me to go and see a physio. Over the next 9 years, I went to the doctor more times than I can remember, explaining my pain and fatigue. I went to chiropractors, physios, osteopaths and had injections in my muscles. Three years ago, I went to my new doctor who decided to do a blood test and found that I had the HLA-B27 gene. She sent me to the rheumatology department at the local hospital and I finally got the diagnosis I had needed for so long”

What are the Treatment Options?

Several treatments can slow AS down and treat pain and stiffness. Exercise and close attention to posture are important to keep the spine mobile. Painkillers such as paracetamol, and non-steroidal anti inflammatory drugs, such as ibuprofen are usually the first choice of treatment for AS.

Massage:

Massage can be used to help relieve tightness in the muscles affected by AS. Massage can improve the flexibility of muscles and consequently joints and provide general comfort and relaxation for AS sufferers.

“Since being diagnosed, I was recommended that massage by a sports therapist is a great way of relieving some of the aches and strong pains. I contacted Rhea and I am so grateful that I did. I see her once a month and it allows me to live a fairly normal life. The massage relaxes all my body and makes me feel like I can walk again. It also really helps my mind as the symptoms make me feel very down. Knowing that I have an appointment coming up lifts me so much and after the appointment I feel “normal” again (whatever normal is)!”

Keeping Active:

Physiotherapy and Sports Therapy are important in the treatment for AS. A therapist can put together an exercise programme to improve muscular strength and help maintain mobility in the spine and other joints. It is especially important to exercise the back and neck to avoid them stiffening into a bent position. Too much rest will increase the stiffening in the spine. Swimming is one of the best forms of exercise because it uses lots of muscles and joints without jarring them. And the water supports the weight of your body. Swimming provides a great overall workout that improves your strength, stamina and flexibility.

Pilates may be useful as these can help with posture, strength and flexibility. Some useful Pilates exercises are:

Swimming:              Hip Twist:                         Breaststroke:          Spine Twist:

“When I started seeing Rhea, I kept saying I didn’t know what exercise I was able to do. I had tried so many to keep me fit and had flairs-ups pretty much every time. She suggested that Pilates was ideal, so I started her classes. The moves strengthen my body which helps me cope better if I do have a flare-up, and the stretching exercises feel so good and help loosen my muscles. I genuinely don’t know how I would cope without these two forms of treatment and exercise. They have truly changed my life”

The National Ankylosing Spondylitis Society (NASS) offers regular exercise classes, and provides lots of useful information and guidance. Visit their website for further information on AS. The information available to AS sufferers indicates that with regular physical activity such as swimming and walking, and following a strengthening and mobility programme consisting of Pilates, a life with manageable pain levels can be achieved.

Written by Rhea Malkin BSc (Hons) Sports Therapist MSST and APPI and STOTT Reformer Pilates Instructor, with Lisa Walker adding her personal experience of living with AS.