Stress
A few days ago I asked some of our Facebook groups how they see the difference between tiredness and fatigue. I have to say that the feedback was so fascinating that I felt that it was worth running a blog to share with you the results.
You can read more of our blogs about fatigue here https://patienttalk.org/?p=239
We should also like to use this as an opportunity for you to share your experiences of fatigue with other readers.
I have to say that one of the commenters describing the experience gave me a profound insight into fatigue. She describes it thus, “Fatigue, it feels as if I am buried up to my neck in wet cement. Everything is heavy, slow and exhausting. However, it is not only my body that is effected. Thoughts and speech become almost overwhelming obstacles to bear. This does not aid in helping us communicate our unseen burdens to those in our lives. We face a new “normal”, I can not even remember what it feels like to wake up feeling “refreshed”.” In a similar vein another commenter mentioned: “ Tired you can still get on with things, fatigue like being weighed down with a concrete slab…hope that makes sense”.
Other commenters offered insight not just into how they felt but also how they felt they were seen by friends and family. Some examples of comments include:-
- “Fatigue: You feel like you are trying to run under water with weights on your arms and legs, and your mind feels like the plug has been pulled out of your brain as it begins to drain. Tired: You could use a nap, or just a rest, until you perk back up.”
- “Fatigue is always with you it makes you feel you have no energy even after a nights sleep. You have to pace yourself. Being tired is when you have had a full day doing whatever and you are ready for bed in the evening. And you wake refreshed the next day.”
- “Ephedrine, caffeine, energy drinks can’t shake fatigue… Its having so much to do and having every intention to do it and no strength to get it done. Often called excuses and laziness despite your best intentions… I think I could deal with the headaches if the fatigue was gone. I feel like my brain is slowed down. You feel like you’re working so hard but its a snails pace compared to others.”
- “Best word of advice ever came 2 days after my dx from a friend who had MS for the last 25 years. Tired means you can go take a nap and feel better, fatigue means that between sitting there and peeing your pants or taking the 12 steps required to make it to the bathroom, option A does not sound all that bad.”
- “Imagine the most tired you have ever felt that point of complete exhaustion…..ok then multiply it by 7 maybe a bit more maybe a bit less. It stops you in your tracks, you cannot physically move, you’re unable to communicate as you’re mouth won’t open to tell someone how you’re feeling. You’re at work the day has finished your colleague states they are tired so will probably be having an early night. You say yes me too, ok see you 2moro, you have to wait around because you’re too fatigued to move to get to your car. You rest for a while then manage to get to your car but then need another rest before you can drive, you may have to stop half way home and rest again, then when you arrive home you have to rest before you can get out the car and get to the door……..oh and then the stairs!!! Lost count of how many times I’ve thought maybe I’ll just sit on the bottom step for a while til I’ve mustered up the energy to get to the top……oh my that sofa looks inviting but I’m hungry but I’m too fatigued to cook or try to eat it either……….yes just a slight difference between feeling tired and fatigued
So what do you think? It would be great if you could share a few of your thoughts about living your life with chronic fatigue. To help frame your views you might want to think about the following questions.
1) What is the main cause of your fatigue? How long have you suffered from chronic fatigue?
2) How would you describe the difference between tiredness and fatigue?
3) How has fatigue affected your lifestyle?
4) How do you try and deal with fatigue in terms of treatments and lifestyles?
5) If you had once piece of advice to give to another person with fatigue what would it be?
Please feel free to use the comments box below to add your thoughts. The questions are, of course, only a guide to your responses – so do add anything you think may be of interest or value to other readers.
Many thanks in advance.
I have really bad fatigue with my MS. I am noticing that since I have been getting B12 shots once a week and taking iron supplements I feel a little better. I suffer from depression as well and after trying several different antidepressants, my doctor has found two that seem to be helping. Fatigue is like being in a tunnel… You can see the light at the end but can’t get there no matter how hard you try. Family and friends say to just try to get up and take your shower or bath and you’ll feel better. What people don’t understand is that physically and mentally you just can’t seem to do it! There was a time when I could just go do whatever at the drop of a hat, but not now. Just like today, my house needs cleaned, errands need ran, etc. But you just get overwhelmed and think I can’t do it! It’s that total lethargic feeling that consumes you mentally and physically.
1) What is the main cause of your fatigue? How long have you suffered from chronic fatigue? I don’t remember when it began but it has been going on for several years now and I thought it had been because of my depression or I was in this “funk” that I couldn’t get out of.
2) How would you describe the difference between tiredness and fatigue? tiredness is the way you feel after a good workout or a long day of work. But after you rest, you regain your energy and strength. Fatigue is never feeling quite awake. Its literally having a cloud hanging over your head.
3) How has fatigue affected your lifestyle? I have felt guilty about being in bed all the time or not getting up to clean my house. It honestly is a disaster. But it takes all the energy I have to do my appointments during the week and take care of my kids in the evening. I plan my schedule to take naps during the day so that I can be present for my family.
4) How do you try and deal with fatigue in terms of treatments and lifestyles? I am going to be treated for my depression and I have always been healthy, but I am really focusing on foods that give you energy. Instead of sitting in my bedroom all day, I move to the couch where I can be with my family until I need some quiet time.
5) If you had once piece of advice to give to another person with fatigue what would it be? DON’T FEEL GUILTY! People are not going to understand you and are going to try to sympathize with you by saying they understand to make you feel better but JUST KNOW it is enough to just take care of your family and that in its self is a big accomplishment for the day.
This was a really confusing issue for me. People would say that MS causes fatigue, but no one really explains what that means. For me. 95% of the time, I am fine, but when the fatigue hits, there is NOTHING I can do but sleep. Right then and there, no matter what. I cannot manage to even make it to the bed. I am very fortunate to have never have this happen when I was not at home, but it scares me. I visit my Mom, and we vacation together, and she is a “Go go go” kind of person. I am her youngest child, and thus far I have been able to keep up with her, but it’s difficult. She say’s things like, “well if you got more sunshine” or, “Once you get moving you will feel better”. It’s really hard to admit that you can’t keep up with your 69 year old mom, but really, the woman is a dynamo. When I get back from a visit, it takes about a week to recover. I wished they would call fatigue UTTER EXHAUSTION. It is for me, but I had thought I was the only one. I didn’t know what fatigue meant for others but this has helped a lot! Thank you!
The explanation of fatigue with the wet cement is just perfect…. and not being able to communicate with your family to TELL them how you feel is a killer too. I used to just retreat to my room, even laying down with little sounds made it easier to BE. The kids would come up to visit and read to me, or share their day, but the GUILT that came with my need to “RETREAT” and just go away from the overwhelming energy that comes with a young family was debilitating.
I have been gluten free, dairy free and mostly sugar free for 2 months now. I stopped taking my provigil (which I was up to 2x a day) just to make it to a 6pm bedtime. I follow Dr. Wahls diet (a dr who HAS MS and devised a diet to treat HERSELF) and have more energy than I have had in a long time. I am working fulltime, PTA President, Teaching a few College courses, raising my 8 and 11 year old AND training for an olympic aqua/bike. I am not saying I’m cured, by any means, I still hear her needs in my body with other limitations and nasty reminders…but I can say that this new way of living IS HEALING and for what its worth…. extremely empowering!
My 8 year son said to me the other day, “Mom, you haven’t gone up to bed before us in so long and I haven’t seen that bad look on your face either. It’s nice having you back.”…. And thats enough to keep me strong with these changes.. Good luck to you all… xo
as teenager i had Pfeiffer disease which brought me into 3+ years of heavy fatigue. i had to stop school, friends etc.
then later at age 27 the fatigue came back with the MS. it lingers on up till now – now i am 47.
i am blessed with moments, days of non-fatigue and that is fantastic, i feel young again. it is up and down going and i know it inside out upside down.
only a person with fatigue can understand it. not very nice for the others who want to help you. it is inexplicable.
i take vitaminD and cannabis oil. both CPD and THC oil. it helps me to get out of the misty fatigue.
and a happy healthy conscious lifestyle helps ! <3
Fatigue, gosh that is a complex issue. I have needed to take a nap during work hours for several years usually at my lunch hour for 20 minutes to maybe half an hour. Just to close my eyes for a bit before I go back to work. If I didn’t at that time I would fall asleep while doing my typing. About 4 years ago I started becoming so totally exhausted during the day that I needed several naps and if I didn’t lay down when the feeling of extreme fatigue came over me, i would collapse. For the last couple of years I learned to lay down and nap before total collapse befell me. I would anticipate that I would be exhausted in due time so I now nap before I go anywhere, doing anything, making dinner, reading, or even just relaxing watching.tv…..I will lay down and close my eyes even if just for 10 minutes and then I am good to go for a couple of hours until i feel the need to lay down again. i hardly go anywhere because i know fatigue will come over me and if I am fatigued i don’t feel like doing anything at all. I can’t lift my arms or carry on a conversation. I don’t want to go anywhere as I can’t drive at night and not good at during the day even due to imbalance issues. I take 2-4 naps a day, but lately because of some supplements I take my fatigue is not always so bad. I have a little more energy and some days can go run errands for 3-4 hours and do okay, but come home and then take a nap. Of course, I do take a nap to make sure I am energized enough to go from store-to-store. It takes some planning. I don’t work outside the home and good thing as I cannot work an 8 hour day job 5 days a week. I admire and feel bad for those that have to work and still deal with this fatigue. I work in my own home and again I am able to lay down whenever I feel the need and that works so well for me.
KarenRW Hi Karen, I would like to know if you would share what kind of supplements you are taking. I would really like to find something that may help me with fatigue once in awhile. I do realize that what works for you may not work for me but I there is always a chance it it may.
Thank you for sharing part of your story with us. I have never been able to put into words the way things really feel as they did in this article describing fatigue, and the way yo did in you story. . . . they really hit the nail on the head. Anyway, I do hope you are feeling better and prayerfully they will find something that will help all of us with this problem.
MS fatigue is one of those things that is hard for someone who has it t explain it and for the person who’s never had it to ever even begin to understand it. The cement statement is good. I’ve often said it’s like trying to walk in knee deep hard packed mudd. You want to get up and do things and you try but just doing that wears you out so badly that you just get to a point where you give up trying.
Fatigue is a Major factor in my life…I don’t quite think the MD Dr. quite understands it, but trying a B12 once a month and an iron pill. It seems summer you have so much energy, but fall an winter…you can just sit. Your mind is Perfectly fine, but your body is stuck in this “mud”. I think that is the hardest thing…you have time to think…you have so many happy memories when everything was “right”. Sleep patterns are just “crazy”. You can sleep 5 hrs or you can sleep 2, its the same result. You look great when you are out in public an portrayed, “you look so good” but on the inside you are sooo tired, numb, joint pain, Its silly what you do to get those nice comments! Just sayin…