Chronic fatigue: patients' experiences and solutions
Published 15 Apr 2019 • By Josephine O'Brien
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.
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.
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19 comments
The best advice I have been given is to listen to your body. If you feel so tired that you want to go to sleep during the day have a nap. Don't force yourself to do too much because you just end up too tired to sleep anyway. Try and relax before you go to bed and don't worry
The GP's don't know what causes it or why, some illnesses just have chronic tiredness and fatigue integral to them but can reduce over time (but some times for life). My GP said to roll with it and pace yourself, cat nap/power nap when can/when you need it through the day, don't beat yourself up about it. Same applies as above to neuropathic pain and 'brain fog' following brain injury and stroke. Not too sure myself about herbal remedies but periods of meditation help.
I agree with all of the above I would add however that it is easier to say some of it than it is to do.
If you need to work to pay the bills then you haver to find a way round being functional & you can say as I have at times well I just need to get on with it, but unless you fit the tiredness into the schedule then eventually you will hit a roadblock. There is a sense in which you only have to find out what works for you, by all means pass it on someone else may be able to use your idea at times or adapt it to suit themselves but so far I haven't come across two people who find the exact same thing works for them. In a sense it is a bit like treating the pain itself you need to adapt whatever works to suit your particular circumstances. The one thing that rings especially true is the acceptance of the condition when you stop fighting with it & kidding yourself on that "It will get better" that it is not" As bad as I think/make it out to be " So eventually it will be "OK" then you can try to make the most of what you do have, hard and all as that is at times!!
Thank you for the results of the survey. It's interesting to see how many are affected by fatigue and more.
After suffering with epilepsy for 45 years and being on medication permanently, regret I do not believe in herbal or alternative medications. I tend to agree with robjmckinney when one has a chronic condition. I would rather remain on the medication I know and that controls my seizures. Acupuncture and other treatments never worked, and I'm not prepared to 'upset the apple cart' by trying others. There is no cure for epilepsy, and whether one tries herbal or alternative medication, it still does not cure the neurological disorder.
I had a serious bout of flu for about 8 weeks, which hit me for a blow this year; this knocked me back and even now a few weeks' later feel exhausted from it. More blood tests have been taken in the meantime, but I listen to my body and follow a strict medication schedule. Medication from all sorts of illnesses have an effect on the body, and obviously can react with one another also.
I am doing voluntary editing at the moment, and know that when tired I need to take a break. I'll make a cup of tea, slow down, listen to music and relax in another form.
Having breast cancer and having loads of other illnesses as well it causes me to be tired I was told that cancer and after having radiotherapy does cause fatigue my body tells me what I can or cant do so I listen to my body if I'm tired then I have cat naps when I need them also my doctor upped my amitriptyline I used to have one so now I take two before I go to bed and also canderstan to help with my hypertension
