‘That sounds a bit made up’: Why frozen shoulder is real (and painful)

First comes the pain, then the immobility. Here’s what experts know about this mysterious condition.

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The pain started as a searing prod in Tania Wolferstan’s left shoulder. New to her job as a prison officer, she thought operating heavy doors was to blame. But then she noticed it was never the same action causing the pain. It became so bad she had trouble sleeping. And gradually, her shoulder tightened until her arm could do nothing but hang at her side. “I couldn’t even explain how to get through it,” she says. “You just do what you have to.”

The problem was frozen shoulder, a condition that blocks the arm from reaching above the head or behind the body. Also called adhesive capsulitis, frozen shoulder can appear after an injury or surgery, but more often comes out of the blue. It sets in for an average 15 months but can last as long as three years. Most cases clear up as mysteriously as their onset.

For some people, the condition is an achy inconvenience – a jammed shoulder can make it tricky to perform some everyday tasks or to exercise. Wolferstan’s case was so severe she was unable to work until surgery cleared the path for her recovery. Then, a few years later it afflicted her other shoulder. “I thought I was more prepared,” Wolferstan says. “The second one was worse.”

So, what is frozen shoulder? What are the treatments? And what could be the cause?

Michele Clayton has frozen shoulder. “It’s actually really damn painful,” she says. Credit:Photo: Brook Mitchell. Artwork: Marija Ercegovac

Frozen – really?

As humans began to use tools and throw with force, the shoulder – the most mobile joint in the body – is thought to have aided our evolution. It is essential to routine movements, such as washing our hair, waving, driving, reaching into an overhead cupboard, and it gives momentum to all sorts of moves from a sawing motion to tennis serves or swimming strokes. But there’s a cost: the shoulder is our least stable joint, prone to injury and wear.

“It’s got too much mobility,” says Dr Joel Werman, a sports physio specialist with the Australian College of Physiotherapists. “It’s an overly ambitious design.”

A capsule of ligaments helps the shoulder joint stay in place, and this capsule is ground zero for frozen shoulder (not the joint, rotator cuff or bursa, where other ailments occur). Its name might bring to mind extreme cold, but in fact refers to a long period of stiffness with three phases – freezing, frozen and thawing. “It doesn’t matter how hard you try to push it, it just won’t go,” says Michele Clayton, a Sydneysider who was diagnosed with frozen shoulder a month ago. It tends not to reappear in the same shoulder, and rarely in both at the same time.

Pain is most intense in the freezing phase. One early symptom is a sharp jab that can build like a wave and disappear. “It will bring tears to the eyes, expletives to the lips. And within 15 to 30 seconds; it goes right away,” Werman says.

“ … people kind of roll their eyes, and it’s sort of like, ‘That sounds a bit made up’. It’s actually really damn painful.”

Clayton finds reaching for her phone or lifting a bag to be painful. She puts up with an ache most days, and feels a sharp pain if she stretches too far. But she has no trouble continuing to work an office job in banking. “When you say to someone else, ‘It’s a frozen shoulder’, people kind of roll their eyes, and it’s sort of like, ‘That sounds a bit made up’,” she says. “It’s actually really damn painful.”

People are most aware of a frozen shoulder when their body weight moves unconsciously during the night, resting even slightly on the shoulder. Clayton manages to sleep most nights, sometimes for three hours until her body weight shifts. “I just can’t rest my arm anywhere,” she says. “You’re tossing and turning.”

Every few weeks there’s less mobility in her arm as the second phase sets in. The tightening, in this “frozen” phase, is due to scar tissue forming in the capsule. Clayton has so far lost about 45 degrees of movement above her head, but how much range she will lose could vary. In severe cases, people are unable to use their arm to touch their lower back or head.

The lining of the shoulder capsule is usually about one millimetre deep. But in cases of frozen shoulder, scar tissue can form up to eight millimetres, says Dr Kenneth Cutbush, a Brisbane shoulder surgeon. “It’s a physical block, not just pain restricting you.”

Gradually, people notice their arm can reach further as the shoulder seems to “thaw” until movement mostly returns. “Think of it like remodelling,” says Richard Page, chair of orthopaedic surgery at Deakin University. “The body remodels that scar tissue, so it is slightly longer and allows movement to return.”

A shoulder goes from healthy to “frozen”.Credit:Johns Hopkins University

How is frozen shoulder diagnosed?

Physiotherapists and general practitioners are usually the first to see patients with frozen shoulder. Werman, a physio, uses someone’s age, risk factors (more on that later), range of movement and whether pain has appeared spontaneously as a guide. But given pain can be the only early symptom, misdiagnosis and mistreatment are common. “It’s a diagnosis of elimination; there’s no test or scan for it,” Page says.

Before anyone called it frozen shoulder, many physicians assumed it was arthritis. A French surgeon was the first to distinguish it. Then, a little under a century ago, US surgeon Ernest Codman named it frozen shoulder, seeing it was unlike arthritis because pain and restriction eventually vanished and left the joint undamaged. Today, frozen shoulder is still commonly misdiagnosed as arthritis. “A simple X-ray will exclude that,” Page says.

Frozen shoulder can also be mistaken for another common group of issues called rotator cuff disease, including tendinitis, impingement and bursitis. Page says these do not progress to block movement, and pain will be greater in frozen shoulder towards the end of motion. Ultrasound and MRI can help rule out these conditions, he says, but have limitations. “An MRI can pick up a whole lot of things that are just age-related wear,” Page says. “Without a clinician or a well-skilled physio involved [it] can actually be misleading.”

Surgeon Richard Page treats frozen shoulder and leads gene sequencing research into it at Deakin University.Credit:Photo: Justin McManus. Artwork: Marija Ercegovac

Who is affected and what causes it?

Scientists are a little closer to understanding the mystery of what causes frozen shoulder and why some people are prone to it, but there are still echoes of Codman declaring 90 years ago it was “difficult to define, difficult to treat, and difficult to explain”.

It affects between 2 and 5 per cent of people. Those aged between 40 and 60 make up nearly every case (in Japan, the condition is sometimes referred to as 50-year-old shoulder). Women are diagnosed with it at a ratio of 1.4 to every man. Clayton, who has a thyroid condition, is also part of a group at greater risk. One study found people with hyperthyroidism were 1.22 times more likely to suffer from frozen shoulder. Meanwhile, the highest risk is for diabetics, who are five times more likely than the general population to get frozen shoulder. Pain and tightness are more often severe for diabetics and last longer.

“It’s likely there are patients who are more susceptible because they have some of these genes that are more easily triggered than others.”

Wolferstan, who is a diabetic, was also more likely to suffer from the condition in both shoulders. So, could diabetes be a cause? “It is possible,” Page says. “What is more likely is that in diabetics, they have an inability to switch something off.” He says it’s possible higher glucose levels affect enzymes and inflammation pathways, giving the condition a better chance of setting in.

One school of thought says a combination of carrying certain variants of genes under the right conditions might lead to someone having frozen shoulder. Page leads researchers in Geelong using next-generation sequencing – technology that examines 64,000 genes at one time – to compare samples from frozen shoulder patients with other shoulder afflictions. The results show a “soup of genes”, he says, many linked with inflammation but several not active in other shoulder conditions.

“Which gene is the light switch [causing the condition], we don’t know. The reality is it’s not just one,” Page says. “It’s likely there are patients who are more susceptible because they have some of these genes that are more easily triggered than others.”

Researchers hope genetic sequencing will one day make diagnosis easier and help people at risk of severe symptoms get an effective treatment earlier. A team of US researchers using the UK Biobank has identified three gene variants in cases of frozen shoulder. Orthopaedic surgeon Mark Langhans, one of the researchers, says if someone has all three variants they are six times more at risk of frozen shoulder than the general population. “We don’t really know what causes adhesive capsulitis,” he says. “It’s probably that you tweak or injure it a little bit, and then you have a response to it. And that response leads to extra scar formation and then stiffness.”

An injury or surgery can, in fact, trigger frozen shoulder as a secondary issue. But more often, Werman says, someone cannot recall injuring themselves, or they attribute the first time they feel pain to the cause. “I believe the condition turns up first. Then this relatively innocuous move is the first time they actually notice it,” he says.

What are the treatments?

A champion golfer was among Codman’s patients in the 1930s who declined treatment and, hearing she would recover, kept playing. Reassurance “probably relieved the minds of more patients,” he wrote, than “my best operative efforts”. He put the best therapy for some down to a good vacation, while for others he manipulated the shoulder, used splints and prescribed exercises. Still, most patients suffered sleepless nights and slow recoveries.

Even today, Werman starts with the good news for the handful of patients he sees with frozen shoulder every week: “We know about 95 per cent or more of the time it gets better, it goes away and it never comes back,” he says. Werman does not offer therapy until someone is in the thawing phase. “I’ve tried everything; massage, manipulation, stretching, strengthening; and nothing helps.”

He encourages people not to put their arm in a sling and instead to keep moving to avoid secondary soft tissue tightening. Werman does not suggest pushing through pain, which won’t cause further damage but does nothing to speed up recovery.

He cautions other services, such as acupuncture and chiropractics, offer no lasting results either. “You get people who advocate their various strategies because, like anything poorly understood, there’s always a lot of speculation,” Werman says. “Some people are spending a lot of money, getting a lot of treatment that does nothing.”

And what about finding a position to sleep? Most people find it too uncomfortable to lie on the affected shoulder. Werman gives no guarantees but says it’s worth trying a pillow beneath the arm if lying on your back, or using pillows to raise the arm level with the shoulder if lying on the unaffected side. “Whatever gets you through the night, it’s all right,” he says.

For the pain, a radiologist can inject cortisone into the shoulder joint. Experts say some patients who are misdiagnosed will receive this steroid injection into the bursa instead, offering less relief. Some clinicians advocate an injection called hydrodilatation – a mix of saline water and cortisone – to expand the joint and attempt to release the adhesions. Page, who refers patients for this procedure, says the method appears to stretch the capsule in some cases in the first few months after onset, but opinion is divided over its effectiveness. “The evidence is mixed whether it’s the cortisone or the hydrodilatation that has the effect,” he says.

“You can actually feel the thickened capsule give way.”

Operating is a last resort for surgeons wary of causing further tightness, tissue damage or even a fracture. There were 2603 hospitalisations for frozen shoulder in Australia in 2020-21. Page says about one in 10 patients need surgery, which he will consider, only in severe cases if symptoms worsen and treatment with cortisone injections fails to provide relief. Page will also operate on patients if their symptoms are unusually stubborn. In a small portion of cases, scarring and tightness is so severe that surgeons fear someone will unlikely improve without surgery.

One procedure involves the specialist moving the shoulder to break up the scar tissue while the patient is under general anaesthetic. “We gently stretch the joint,” Page says. “You can actually feel the thickened capsule give way.” Surgeons will also release the inflamed capsule lining using a keyhole procedure, returning a portion of movement. “It’s not an instant fix; it takes two or three months to get over that with physio. But what we are doing is shortening the recovery phase,” Page says. (Wolferstan received surgery more than a year after first feeling pain, and her arm stayed weak for months afterwards.)

Sports physio Dr Joel Werman with Michele Clayton.Credit:Photo: Brook Mitchell. Artwork: Marija Ercegovac

Light physio plays a role for Werman once people reach the thawing phase. From here, people walk their fingers up a wall, gently position their hand up their back, and stretch across their torso to restore mobility. “My job is to take people through rehab to make sure they don’t leave residual issues,” he says.

Christopher Kevin Wong, a professor of rehabilitation and regenerative medicine at Columbia University in New York, who has reviewed several studies of frozen shoulder, says people seldom regained all of their range of movement unless they did physio. People do regain their active motion, he says, but not their passive range – which is when someone else applies force to stretch a joint to its full potential. Wong will work on other joints around the shoulder to return this movement. “Usually, the limitation in the shoulder range of motion is not just the shoulder,” he says.

“It may not be the magic bullet, but even if it improves their pain and also reduces the time course, I’d be happy.”

An almost certain recovery can also make frozen shoulder seem benign, says Sydney shoulder surgeon Sumit Raniga. “The problem I have with that is people suffer,” Raniga says. He became fascinated with frozen shoulder after finding it was a “vacuum” in shoulder research. Raniga has plans for a clinical trial to block a molecule he believes is involved in frozen shoulder. “It may not be the magic bullet, but even if it improves their pain and also reduces the time course, I’d be happy.”

Wolferstan was unable to work at the prison for 18 months. One day, months after surgery, she was about to take a routine dose of painkillers. “When was the last time I was in pain? It was two days ago,” she recalls thinking. Pain had slipped away as ambiguously as it arrived. “When you’re in that much pain, all you’re thinking is you have to make it to the next day,” she says.

For Clayton, whose frozen shoulder is just setting in, the hardest part has been getting the right diagnosis and pinpointing what treatments work. “If you know it, you can live with it,” she says.

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