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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... >> Learn more

Comments

Painpainpain
on 18/06/2019

If I was to listen to my body I wouldn't have a life. I would be asleep all the time. 

I get up, get kids off to school. Some days fall asleep on sofa. Go back for kids, do what I have to do. Bed kids then go to bed myself.  Don't feel the slightest bit better.  HELP!!!!

Tigger.co.uk
on 23/07/2019

I suffer with fatigue as I have so many different illnesses that I find it very hard to sleep I've tried just about everything if I I excercise to much I get tired and breathless ,my cancer has really scared me as if I close my eyes I think that I wont wake up so I take cat naps to make sure ,I have a v shaped pillow and I lay on my side with my leg up to help me with my breathing but really do find it hard to sleep my doctor uped my amitriptyline to help me but I still cant sleep easy  

Poppet
on 09/08/2019

Hi everyone. I also suffer from chronic fatigue. Without going into any great depth, my life is a total mess! Family squabbles, a bad childhood, heart operation, breast cancer, now diabetes. I suffer from anxiety and depression and although I try hard to lead a "normal" life....sometimes it's just too hard to make the effort. I force myself to get out of bed each day and get ready to take my dog out. Sometimes I find myself crossing over the road to avoid talking to people as I feel totally overwhelmed having to make polite conversation....I yo yo diet and have been every size from a 20 to a 12. I drink too much red wine for my own good, so that us another guilt trip to deal with. I am 65 years old and I thank God everyday that he gives me a clean slate to start again. There isn't a magic wand to wave, so just need to put one foot in front of the other and take baby steps. 

Aayawa
on 14/10/2019

@robjmckinney Not all alternative medicines are quackery. At one time giving patients foxglove for heart conditions was considered quackery. They it was found that they contain digitalin, which is good for the heart. Similarly metformin was derived from Goats Rue, which was used to treat diabetes.

Having said that I would say be sceptical and cautious when looking at alternative treatments (there are a lot of quacks and crackpots in this field more even than in politics) , even though some may have as yet undiscovered benefits.  Bear in mind that what works for one person may not work for another and even be harmful to a third.

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