Some sepsis survivors experience a variety of physical, psychological and emotional problems while recovering. This is known as Post Sepsis Syndrome (PSS) and usually lasts between 6 and 18 months, sometimes longer.

Because you may look well, others (including your employer, doctor, or family) may be unaware of the problems and expect you to be better now. Don’t suffer in silence. Tell them about PSS and how it’s affecting you.

Physical symptoms of PSS:

• Lethargy/excessive tiredness
• Poor mobility / muscle weakness
• Breathlessness / chest pains
• Swollen limbs (excessive fluid in the tissues)
• Joint and muscle pains
• Insomnia
• Hair loss
• Dry / flaking skin and nails
• Taste changes
• Poor appetite
• Changes in vision
• Changes in sensation in limbs
• Repeated infections from the original site or a new infection
• Reduced kidney function
• Feeling cold
• Excessive sweating

Psychological and emotional symptoms of PSS:

• Anxiety / fear of sepsis recurring
• Depression
• Flashbacks
• Nightmares
• Insomnia (due to stress or anxiety)
• PTSD (Post Traumatic Stress Disorder)
• Poor concentration
• Short term memory loss
• Mood swings

What treatment is available?

There is no specific treatment for PSS, but most people will get better with time. In the meantime, it’s a case of managing the individual problems and looking after yourself while you are recovering.

Tell your family and friends about PSS, explain how you feel and give them information to read so they can understand what you’re going through. It will help you all get through this difficult time.

Not all doctors know about PSS, so it may be helpful to take one of our booklets with you or to print out this information. It is important that your doctor assesses your symptoms and excludes any other causes of the problems.  Your doctor may refer you to a different professional to help manage individual PSS problems, such as a pain specialist to manage your pain, a counsellor or psychiatrist to manage mental health and emotional problems, or a physio or occupational therapist to manage fatigue.

If you are struggling with your recovery, you can call our helpline and speak to a member of our support team. These are trained nurses with an understanding of sepsis and the problems that can occur during recovery.

Above all, remind yourself that, horrible as PSS is, you’re not alone, and these problems are part of the recovery process.  Sometimes you have to look back to where you started to see how far you have come.

Recurring infections

Some survivors find that their immune system is not as effective in the year following their sepsis.  As a result, they get one infection after another, whether it’s coughs and colds, repeated water infections or a recurring wound infection.

This can be worrying, as many people fear that they may get sepsis again.  In most cases, early medical consultation and treatment with antibiotics treat the infection and it doesn’t progress to anything worse. But it’s important not to neglect any infections. Always make sure you, and those close to you, know the signs of sepsis and seek urgent medical attention if concerned.