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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

Jontt44
on 07/05/2019

I would be careful with any Alternative Treatment and Food Supplements especially as you are advised to inform Medical Professional of anything taking that could interfere in numerous ways with medical treatment. Likewise Meditation and other Quack ideas just want a slice of large Treatment Market to be definitely avoid. Majority of us have Asthma nurses and Specialist consultants as well G.P. I am just about starting road to recovery after 9. Months of intense Chronic conditions. As Specialist implied Asthma is not only cause for conditions after failure of first standard steroid and antibiotics failed to help in any way? G.P. then gave double strength of above which also made no impact on condition. Fortunately original Asthma nurse noticed me waiting to see G.P. After which she informed both Asthma and chest conditions way out of control. Seen Specialist very quickly as have among other conditions an Aortic aneurysm of rear main heart artery. Since 2011. To finish after trials of different treatment now have 2. Steroid inhalers also a Nasal spray and my original Backup inhaler which sure most have? It’s only days since start of so many to say if working? My incontinence is something makes things worse as maybe in bed overall many hours longer because need keep getting up every hour. Add to fact up also coughing and bringing up mucus. Day and night. Would I take Alternate Treatment No! Asthma is Medical condition needing medical Treatment comprised different types from Inhalers to Tablets. Been on everything from young was Spirometer powder inhaler, Steroid tablets daily along with Theomophline tablets. Recently condition added to numerous Including Prolapsed disc, Osteoporosis latest is Epilepsy. Always leave to Experts because Likely have Underlying conditions? From age 3. Suffer from Chronic Asthma and did also have Chronic Bronchitis. Additions added with worsening health and age my own Conclusion. Although Experts are exceptional in Fields I have to deal with best I can? From being told Exercise to No Exercise and back to minimum exercise. I believe Exercise is good for loosening Thicker dark phlegm in lungs. 

Trudij
on 10/05/2019

Chronic fatigue is all about listening to your body and pacing yourself.  It's the spoon theory.  Dont use all your daily spoons in one go. 

You need some spoons to shower and wash your hair so that means you cant always do hair washing every day . Listen to your body and pace yourself and be kind to yourself.  

Xx

Squidly
on 11/05/2019

I have this problem and in the past have had pull over and park somewhere when traveling and rest, it’s very annoying. I also get the side effects of hay fever which is fatigue.  Hay fever remedies do not help the fatigue just the physical symptoms.

My personal remedy is to exercise, in my case weight lifting. It is very hard to break through the mental barrier but afterwards I feel more energised. It is not helped by being 70 years old and remembering all the things I used to do that are now not possible.

GLOJO1
on 17/05/2019

When  people say exercise is good for you if you have fibromyalgia and rheumatoid along with chronic fatigue. I just wonder how they expect you to do it when you can't even stand up.I have tried holding on to things so that I can get my legs moving,i have even tried laying on the floor, but then i can't  get back  up ,then i end up  crying and  feeling even more depressed and angry  with  myself that I  just don't know what to do.If there is anyone out there that can help me  Please, Please, get in  touch. I have never ever felt as ill as I do now. I don't know how much longer I can go on like this. My  Doctors know what's going on but don't seem to know how to deal with it. They  put their arms around me and tell me how sorry they are but they don't know what to do. I am under a Cardiologist, a Rheumatologist, Orthopaedics,Pain Management, now I have to be referred to onocollogy.If anyone can come up with anything at all, please come up with any advice. Thankyou. Take care of yourself everyone and God Bless From Glojo.

,

WinterSky
on 28/05/2019

I find that I can’t enjoy a social life. This is one of the most heartbreaking things of fighting back from chronic depression and social anxiety. I’m finally willing and ready to get out and socialise but the body just can’t take it.

When my mental health was good in the past, I loved going to festivals and concerts, football matches and engaging in keep fit classes (boxercise, circuit training, step aerobics, bums & tums etc). I physically can’t even stand at a gig for a couple of hours now.

If I know I have to leave the house for an appointment, shopping or a social event, I have to have complete rest for days leading up to it and take several days to recover. Even doing the laundry or preparing a meal exhausts me and may be the only thing I do that day. For instance, I desperately need a bath. Just typing this is exhausting. I’m going to switch off in a minute and try and build up to running the bath. If I don’t manage it today, I won’t beat myself up. I’ll just try again tomorrow. There’s no point getting upset by what I can’t do, I can’t change it.

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