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Stroke patients warned not to ignore late-onset muscle pain – a devastating symptoms that can happen years after the first attack


Stroke survivors are struggling with debilitating muscle problems, pain and depression, unaware that these symptoms can strike months or even years after the initial attack, doctors have warned.

After being discharged from hospital, stroke patients are typically given a three-month package of care that includes hospital visits and physiotherapy, but are often ‘left to fend for themselves’ once this ends, say patient advocates.

This means late-onset symptoms – which include the muscle-stiffness condition called spasticity – are being missed. If not promptly tackled limbs can become permanently deformed, meaning the only option may be surgery.

One in four patients are forced to give up work as a result of these complications and a third claim their everyday life is affected by pain and involuntary limb spasms, according to survey by drug firm Ipsen – shared exclusively with The Mail on Sunday to mark World Stroke Day today.

Stroke survivors are struggling with debilitating muscle problems, pain and depression , unaware that these symptoms can strike months or even years after the initial attack, doctors have warned

Stroke survivors are struggling with debilitating muscle problems, pain and depression , unaware that these symptoms can strike months or even years after the initial attack, doctors have warned

The poll found that one in three patients had not been told about potential late-onset problems, which also include fatigue, cognitive impairment, depression and incontinence.

More than 100,000 Britons suffer a stroke each year, usually due to a clot forming a blockage in the blood vessels supplying the brain.

If not treated within a matter of hours, severe brain damage can occur that may be fatal or lead to profound disability.

The signs to watch for if you are suffering a stroke

  • Stiffness, pain or involuntary movement of the wrist, shoulders, arm, foot or leg – in the side affected by the stroke – is a sign of spasticity.
  • Discomfort, pain, a burning or cold sensation, or numbness in the side affected by the stroke may be a condition called central post-stroke pain.
  • Memory lapses, difficulty sleeping and a lack of interest in things you once enjoyed. Irritability, apathy and uncontrolled expressions of emotions are also common.
  • Seizures can occur, manifesting as changes to vision, smell and taste, loss of consciousness and jerking movements.

The Government launched the Act FAST drive in 2009 to encourage the public to call 999 if they notice the symptoms of a stroke. The acronym stands for Face, Arms, Speech and Time: facial drooping or paralysis; a sudden inability to raise both arms; slurred speech; and that each of these things should be considered a medical emergency.

In the first year alone it led to an additional 38,000 stroke patients getting to hospital within a critical three-hour window.

And thanks to advances in drug and surgical treatment, stroke deaths have halved in the last two decades.

There are now 1.3 million stroke survivors in the UK, and more now needs to be done to help them according to Dr Ganesh Bavikatte, a brain specialist at The Walton Centre in Liverpool.

‘Half of all patients who suffer muscle stiffness and spasticity following a stroke develop it after three months or longer, but don’t realise the two are related,’ he said. ‘If this isn’t treated promptly, the only option is surgery, and we want to reach people before that happens.’

Clinical guidelines urge eight to 12 weeks of physiotherapy for people discharged from hospital after a stroke.

And the National Institute for Health and Care Excellence recommends patients are assessed to identify any ongoing needs and receive bespoke support ‘for as long as it continues to help them achieve their treatment goals’.

But Donna King, a volunteer with the Stroke Association – and a stroke survivor herself – said: ‘I had treatment for muscle stiffness when I started to get it later on, but other people I’ve spoken to have basically been left to fend for themselves without any support.’

Early on, spacticity is tackled with injections of muscle-relaxing botulinum toxin, stretching and physiotherapy.

In addition to spasticity, up to half of stroke survivors report fatigue after six months, and one in ten suffer cognitive impairment – difficulties with memory, thinking and concentrating – in the first few months, but this figure jumps to 30 per cent after a year.

One in four patients are forced to give up work after suffering a stroke

One in four patients are forced to give up work after suffering a stroke

One in ten also struggle with long-term emotional instability, while depression affects a third. Severe injury due to falls occur in three quarters of patients within a year of discharge.

‘We know that people are not seeking help for many of these things,’ says Dr Bavikatte. ‘And they are not recognised by as late symptoms of stroke by the patient or their carers, and even some doctors.’

It’s A message that resonates with Wendy Lamin, who suffered a stroke ten years ago while on holiday in Belgium. The married mother-of-two from Edinburgh says: ‘The initial care was fantastic and I came home with a list of treatments as recommended by the Belgian neurologist, but I was offered almost nothing.

‘I was told by my local neurology team the damage was done and that was it, basically.’

After a year, Wendy developed tinnitus and later fatigue so severe she was forced to give up her demanding job in financial consultancy. She also suffered with frozen shoulders.

Despite being known post-stroke complications, she adds: ‘I spoke to doctors but no one told me my symptoms were related to the stroke. I ended up paying for physiotherapy for my shoulders.

‘I felt like I had to look after my own recovery, which is astonishing. My life stopped after I had a stroke, and I’m still affected by fatigue. I was lucky I wasn’t paralysed, like some people are, but I have short-term memory issues which get worse when I’m tired or stressed.

‘The most important thing for me was discovering the Stroke Association, who told me about Facebook support groups. It’s the people I met there that really helped me through. More needs to be done to help stroke survivors.’

  • For information and advice visit stroke.org.uk.



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