Living with frozen shoulder: ‘It was as if someone had been hitting my arm with a baseball bat’

<span>‘My shoulder stopped working. When I struggled to lift my arm, it felt as though it was tearing apart. I had a frozen shoulder.’</span><span>Photograph: Microgen Images/SCIENCE PHOTO LIBRARY/Getty Images/Science Photo Library RF</span>
‘My shoulder stopped working. When I struggled to lift my arm, it felt as though it was tearing apart. I had a frozen shoulder.’Photograph: Microgen Images/SCIENCE PHOTO LIBRARY/Getty Images/Science Photo Library RF

It started with shoulder pain, sharp and burning as if the muscles has been set alight. Breathing became uncomfortable. I had to steel myself to cough. The damage might have come from holding up the hefty telephoto lens while photographing birds on a nearby wetland or from sitting at a desk with my left arm – the afflicted one – almost immobile for hours. Or it might have come from something sneakier that developed unnoticed until it crossed a threshold.

I was certain the pain would resolve itself in a few days – then a few more days, and a few more after that. My mistake.

My shoulder stopped working. When I struggled to lift my arm, it felt as though it was tearing apart. I had a frozen shoulder.

Frozen shoulder affects 3 – 5% of the population, and is reported slightly more frequently in women than in men. It tends to develop between the ages of 35 and 70, with a peak incidence among people in their mid-50s. Despite its prevalence, it is one of those conditions that tends to slip under the radar unless – or until – you are affected by it.

“It’s a bugger of a condition,” Hobart radiologist Philippa Taplin tells me.

To understand frozen shoulder, it helps to know the structure of the joint. The rounded head of the upper arm bone (humerus) fits into a small, shallow bowl on the shoulder blade (scapula), allowing a greater range of movement than any other joint. The junction of the two bones is cushioned by cartilage and enclosed in fluid-filled capsule of tissue. Normally, the capsule is baggy – Taplin describes it as “like a deflated balloon” – to allow free movement, but when inflamed it tightens, effectively clamping the joint. The condition is known medically as adhesive capsulitis. Adhesions are scars that stick to other tissues; capsulitis is inflammation of the capsule.

“When the capsule is inflamed, the shoulder is frozen and can’t move in any direction. It hurts because of that inflammation and because the scars stick together. Once the scars start, it just gets worse.”

The shoulder is the most flexible joint in the body. It allows you to windmill your arm to hit a power chord (not me), raise weights above your head in a power lift (also not me), and reach back to adjust cushions for a power nap (me).

It is also the most complex joint. The ball-and-socket arrangement of an upper arm and shoulder blade is only one element. Shoulder movement involves the collarbone and rib cage and a multitude of muscles, tendons and ligaments. When the capsule becomes inflamed, the effects extend outward. They extend inward too. Frozen shoulder also has an impact on mental well-being.

Exactly what triggers a frozen shoulder remains relatively poorly understood. Diabetes can be a factor in its development, with as many as 20% of people with diabetes experiencing the condition. Sometimes it is precipitated by an injury.

When Louise Zedda-Sampson broke her arm, part of her rehabilitation program involved trying to minimise the risk of frozen shoulder.

“Because you don’t want that,” medical professionals informed her.

But often frozen shoulder is idiopathic – it happens with no identifiable precursor.

Younger women I spoke to said they hadn’t heard of it. But when I talked to women closer to my age – the peak age for frozen shoulder – there were plenty of stories to share.

Patti Miller developed frozen shoulder on her dream trip to Paris. Soon after arriving, her shoulder started to ache.

“It felt as if someone had been hitting the top of my arm with a baseball bat.”

For Cate McKeown, it began with a sore shoulder that came on gradually.

“Then suddenly it got really bad. I could no longer put my arm up when hanging out the washing,” she tells me.

I couldn’t get over how many times you use a shoulder.

Tamara Playne

Shoulder pain is the first phase. The second phase, reduced mobility, often extends for a year or more. The mild-sounding term ‘frozen shoulder’ downplays its profound effect on everyday activities. Washing, dressing, cooking, driving, even signing a form becomes painful and difficult. Something as straightforward as walking the dog turns into an exercise in planning.

“You can step on a lead, but you still need two hands to open a dog poo bag,” says Tamara Playne. “I couldn’t get over how many times you use a shoulder.”

Unable to lift the camera, I abandoned photography. In doing so, my world contracted. I had lost the joy and energy that came from recording fleeting moments in nature. Playne gave up bass guitar while the condition persisted. McKeown put netball on hold. Frozen shoulder leads to lower activity. It affects every aspect of life.

A 2022 qualitative study of 10 frozen shoulder patients by a team of researchers at Flinders Medical Centre, found that the pain, lack of sleep, and loss of independence had profound psychological impacts. This is often compounded by the feeling that what they are going through is not understood by their friends and family, and sometimes not even by their medical practitioners, who might be unfamiliar with the condition and not know how to deal with it.

The FMC study and others have suggested that frozen shoulder can sometimes lead to an altered sense of self. As well as the impact on daily living, it also prevents sufferers from spending time with those close to them, and taking part in favourite hobbies and sports.

The third and final phase is a ‘thawing’ as the stiffness and contracture slowly dissipates and the shoulder recovers mobility. This proceeds at a glacial pace and can take between 12 and 42 months to resolve. A shoulder might never regain the full range of movement – both Playne and I are still limited in the extent to which we can raise our arms – but it is a relief to be able to do all those activities again unaided. (Including bagging dog poo.)

Maria Kallas, a physiotherapist with a special interest in shoulders, says prompt treatment is the key to dealing with it.

“People can’t move, can’t sleep, can’t cope with work or families. They’re in pain and are looking for an answer.”

In its early stage, frozen shoulder can sometimes be mistaken for rotator cuff injuries, so it is important to find a practitioner with a knowledge of shoulder problems.

“Get quick advice within the first couple of weeks. There are good, strong treatment pathways and good ways of management.”

It turns out I did the wrong thing by stretching when the pain first started. Pain management coupled with treatment to reduce inflammation is more effective.

“Keep things cruisy in the developing phase,” Kallas said. “Movement is for later.”

Physiotherapy and tailored exercises are beneficial in the second phase.

I still don’t know what caused my frozen shoulder. Some suggest that stress can trigger the inflammation linked to frozen shoulder, or that the condition sometimes correlates with people suffering from depression or anxiety. Patti Miller suspects that dragging a heavy suitcase across cobbles might have played a part in her situation. Tamara Playne wonders if a birthday surprise for her husband, where she steered him through Brisbane to the Gabba while he was blindfolded, could have precipitated hers.

When Cate McKeown developed the condition, she was told that it would eventually come good. But, she was cautioned, it could appear in the other shoulder (recurrence in the opposite shoulder can affect 6 – 17% of patients, usually within five years). It did.

But, the second time around sufferers know what’s ahead and that helps them to cope. With experience comes an understanding of the condition, the limitations it imposes and, crucially, that it will end.

“I was more patient with it the second time,” says McKeown. “I knew what was happening and what to expect.”