Post Sepsis Syndrome – UK Sepsis Trust

Some survivors will experience a variety of physical, psychological and emotional problems while recovering from Sepsis. This group of problems has become known as Post Sepsis Syndrome (PSS).  These problems commonly last 6 to 18 months but can go on for years for some.  The reasons why some people get Post Sepsis Syndrome are poorly understood.  Most people are unaware of the problem – that includes employers, healthcare professionals, family and friends. More often than not the person experiencing PSS will look well and it may be some time since their Sepsis, many people will expect that you should be better now. This can make it a very lonely place for someone who is experiencing PSS and some people even start to doubt themselves and wonder if they are imagining all these problems.

SYMPTOMS OF POST SEPSIS SYNDROME

PHYSICAL:

– 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:

– 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 FOR POST SEPSIS SYNDROME?

There is no specific treatment for PSS and there are no doctors that specialise in looking after patients who have PSS.  Most people with PSS will get better with time. In the meantime, it is a case of managing the individual problems that occur and looking after yourself while you are recovering.

You should make your family and friends aware of PSS and give them information to read so they can gain some understanding of what you are going through. Don’t suffer in silence – it is common to think that people around you are weary of listening to you, and keep all your problems and worries to yourself. Talk to them and let them know how you feel, it will help you all to understand what is happening and get through this difficult time.

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

If you are struggling with your recovery or have questions about what is happening to you and you are finding it difficult to talk to someone who understands, you can call our help line 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; they can listen to you, answer your questions and sometimes sign post you to other help.

If you are experiencing some of the problems of PSS it is important to remember that it is not just you there are many other people who are having the same problems and these are part of the process of recovery.  Progress can be very slow with many ups and downs and sometimes you have to look back to where you started so you can see how far you have come.

RECURRING INFECTIONS

Some survivors’ immune system that normally helps them fight off infections is not as effective in the year following their sepsis.  The result of this is they find they are getting one infection after another, this could be coughs and colds, repeated water infections or a wound infection that keeps coming back. Recurring infections can be worrying when recovering from Sepsis as many people are very anxious that they may get Sepsis again.  For most people, early medical consultation and treatment with antibiotics treat the infection and it doesn’t progress to anything worse. It is however important for you and people close to you to be aware of this problem and not to neglect any infections you have and to make sure they know the signs of Sepsis and seek urgent medical attention if concerned.