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Chronic fatigue: patients' experiences and solutions

15 Apr 2019 • 19 comments

When you have a chronic disease it is common to be tired, have painful symptoms, severe side effects, anxiety... Daily life can be difficult and lead to real exhaustion. We wanted to know more and allow Carenity members to express their opinions on this subject. How do they perceive their fatigue and its causes? What solutions have they implemented? What is the role of the doctor? Read our article to find out what patients think, identify and suggest new ways to fight chronic fatigue.

Chronic fatigue: patients' experiences and solutions

Fatigue that is both physical and mental

Let's start with an overview of the fatigue experienced by survey respondents.

 

88% - physically tired

73% - nervously tired

88% of our members feel physically tired. 73% also reported experiencing nervous and psychological exhaustion. The stress of diagnosis, waiting for each appointment and the difficult administrative procedures can undermine patients' morale and energy.
On a scale of 1 to 10 (10 corresponding to extreme fatigue), patients rated their fatigue as 7. For them, the person responsible is clear: for 89% of respondents, the disease plays a major role in their condition.

Symptoms of the disease are responsible for patient fatigue

We wanted to know more precisely what caused fatigue for patients with chronic diseases.

 

   83% - symptoms of the disease


   31% - side effects of treatments

 

   25% - social pressure

 

   22% - treatment

Our survey video!

The impact of fatigue on patients' daily lives

We wanted to know more precisely what caused fatigue for patients with chronic diseases. For 98% of patients, fatigue has a strong impact on family and social life.

99% - social life


98% - family life

90% - intimate life


81% - professional life

All aspects of patients' daily lives are affected by chronic fatigue. Some members have even experienced embarrassing or dangerous situations because of their condition, falling asleep at the wheel, for example: "I refuse to go out if it takes more than 20 minutes to drive. One day, I was driving my child back to his internship and I was very, very scared." 

Solutions against chronic fatigue

Patients have tried to implement solutions to fight chronic fatigue. 62% have even discussed it with their general practitioner and 47% with another specialist. Our respondents took charge of their health, even though 42% of them did not benefit from the exchange with the doctor. 59% of the members occasionally or often use sleeping pills. Here are their other solutions:

   50% - more sleep

    30% - do less activities

   27% - energizing, food supplements and relaxing activities

   22% - a rich diet

What our members expect: more advice and alternative medicines

"In my opinion, health professionals should take this concern into account and possibly suggest elements that relax us and make it easier to fall asleep."

"It's up to me. I have to reduce my activities so that I can spread them out better over the week."

"Doctors should direct us towards alternative medicines or suggest taking food supplements, herbal remedies etc.

"If the doctors could explain to me the cause of this fatigue, it would reassure me. Doctors and specialists could better take this fatigue into account and could try to find solutions".

"I don't think there is a solution, fatigue is an integral part of my illness."

"Listening and guidance to an appropriate professional, include in the care path of sophrology, acupuncture..."

"I think I need to better acknowledge my fatigue and actively work at reducing it as well as accept it. As my acceptance plays a large role in getting my head round the idea of working at improving it. Also speaking to someone who could possibly understand my fatigue would really help me."

Are you tired?

And what is your solution against fatigue?

Survey of 2,862 Carenity members in France, United Kingdom, Italy, Spain, Germany and the United States in March 2019.

avatar Josephine O'Brien

Author: Josephine O'Brien, Community Manager UK

Josephine is the Community Manager of the UK with a Master’s in Publishing. She is a strong believer in the power of words and strives to make Carenity UK a comforting, vibrant and informative community for both patients and their families.

Comments

on 16/04/2019

This is great advise and I do try this but the cost just stops me in the tracks it's so expensive when unable to work has it's takes about 12 months , but I understand what you are saying 

Kind regards Shaun 

on 16/04/2019

If we are discussing seriously ill people, referring them to alternative medicines which is basically quackery with a placebo effect is a concern. My brother died through using alternative medicines instead of seeking real medical advice, so I would advise against such quackery. Professional medical advice should always be sought and beyond your GP, specialists and medicine are the only real solution.   

on 16/04/2019

Since I came back from a short holiday in Turkey many years ago, 25 years perhaps, I have suffered chronic fatigue syndrome. I still worked, cycled to work, ran in the park [before psoriatic arthritis arrived] and  was so tired that I decided I could not have a social life. Socialising was just too difficult when working,  i had no energy, brain fog,  I began to suffer a dreadful depression and life went down hill.

Looking well, and getting a tan easily from just walking to shops meant i always looked well.  I don't read any cures anymore as it is a very multi faceted thing.  Doctors still baulk at it and I don't discuss it with him. 

on 16/04/2019

I try to pace myself. Sit for a while until I feel strong enough to get back up without standing like a crooked old lady.

on 16/04/2019

Tiredness and lack of energy is something I struggle with every day. If I could just have 4or5 hours of quality sleep I would be happy, I am constantly waking and find it difficult to get back to sleep. With household duties its as and when I feel up to it, I am lucky that my hubby is extremely supportive and helps where he can. My doctor told me " listen to your body" so I do now.

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