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Readers Respond: How Do You Explain Chronic Fatigue Syndrome?

Responses: 44

By

Updated September 14, 2009

Regeana

I developed Cronic Fatigue (Ebstien Barr)in 1991 after a major surgery. I was a single parent and suddenly I could not work or take care of my children. 20 tears later I have learned to cope with it. I have good days and bad.I am a teacher assitant and It is so hard to keep focused. Forgetting parents names and keeping on task can be very embarrasing but the worst is knowing that I know something but can`t find it in my brain. Often I don`t relise when I have an attack, like now, For 2 days I have been thinking I have the flu. Then suddenly I realise HEY it is CFS. Oh yeah! Sorry I forgot! I feel so..............
—Guest Regeana Everett

I am comforted

While I am sorry that other people suffer with CFS, I am also comforted to know there are others that understand what I sometimes don't totally comprehend myself. Even after having Fibromyalgia and Chronic Fatigue Syndrome for over 15 years, I remember what it was like before I was ill; and, I miss being that person. For instance, after having to force myself to go to the grocery store, I still feel guilty for missing church, or for sitting most of the day. I confuse laziness with illness. I don't really think it is my nature to be lazy; yet, because I don't feel like doing anything much, I feel guilty. CFS plays with my mind in this area. Even though I know my body is not healthy anymore, I feel like I should be better. I have come to more of a peace about my health issues than I had several years ago, even though I have moments as I describe above. I have learned to enjoy what I can do, and let myself rest more easily when I have to.
—Guest Deb

A Permanent Hangover

CFS to me is like living with permanent flu or a hangover, only worse because you know it won't be gone in a day or two. Getting through the day feels like a constant battle against the fatigue and headaches.. My mind wants to do so much.. See friends, go out and socialise and have fun.. But my body just won't let me and it feels as though i am trapped in a bubble.
—Guest Hayley

How Do You Explain Chronic Fatigue Syndr

I have found this explanation to be the best one I have ever read actually & thank you so kindly for that! I have been sick since 8-10 & will be 65 next wk. I never have remissions anymore & pretty much no longer function. There are times that I have felt so terribly alone, & grateful for all the research & others I read about on different sites. My fatigue/pain/brainfog just continue to get worse with age. When I thought I couldn't get any worse, I have, with no answers or reasons. I went to a gym for five yrs. thinking the dr. was right about exercising. It did nothing but fatigue me more just doing water aerobics, & then I got angry & tried doing other things. I finally quit & now just take walks. I do feel exercise is an enemy, not a friend. I keep gaining wt. because I can't do anything. The house is a total disaster & the depression trying to handle it, just makes it all that much more difficult. There will be answers soon, with all the research & hope it's not too late for me.
—Guest DALETK

its foggy and muddy in here

i have FM/CFS for 11 years.It feels like walking in mud,dragging a ball and chain in the fog.its so hard to work up to anything.It's hard to talk and exhausting to have to repeat anything.God how hard that is!Just let me sleep-night is the enemy.Nobody gets it.I look fine-why do i make everything seem so difficult??cause it is(for me).Just look at me and understand.Stop asking how i am.it doesnt change and it makes me feel as weak and embarrased to say i feel like crap yet again.Your worst day is my best day.don't you get it?AAAAHHHHH
—Guest kats20paws

Out With the Bathwater!

It first hit me in 1992 after a very stressful house relocation,and I thought it was just exhaustion.After a week,blood tests showed Epstein Barr and I had 3 months in bed sleeping most of the time.Family couldn't understand and my daughter,aged 21,thought I had somethig contagious,and wouldn't come into the room.Very hurtful! I felt like someone had pulled out the plug while I was standing in the bath and my energy had gone with it. I have had one major relapse,2002,after a flu,but when I feel cold sores developing,and generally feeling run down,I know to start taking a tonic high in Echinacea and vit C.That helps,but it usually means a few days in bed.Like others,I hesitate to pre-book outings as I have had to cancel so many times over the years. Be kind to yourselves,and laugh a lot,it helps.
—Cassie.d

My life

I'm a successful older university student. I look fine. A bit overweight, but healthy. Only those closest to me understand part of what's going on. My brother and my husband and in-laws are the only one, however, that truly understand. I've had CFS/FM for a year now. My life went from being physically capable to second-guessing everything based on pain/energy levels. My best day is a 3 on a 1-10 scale. But I've adapted so that on a 3, I can behave normally, do things normally, and those who don't know, don't see. My muscles and bones always feel like they're coated with ground glass, and sawing through the nerves. And I always feel like I'm moving through taffy when it comes to energy. Or like someone took a vacuum and sucked all the energy out of me. In spite of this, I've done well in school, and my husband and kids and family still love me. But I always feel guilt for having to cancel plans at the last moment, having to constantly ask people to wait. Always needing time or help.
—Guest leemier

Lead Legs

Lead, as in Pb. This is what my legs are full of, or at least that's what it feels like. Sometimes my whole body is overwhelmed by feeling pulled down, my fingers can be weighted to the bed. My head is heavy on my shoulders, my back is straining to support itself. Being in a wheelchair is like someone cutting off half the balls and chains i'm dragging around, but still it is not a complete relief to the symptoms. My head aches from the constant exertion of trying to be conscious. I sleep for a whole day and feel no more refreshed than when I went to bed. The shooting, stabbing pains from muscle immobility, and from muscle mobility are a toss up for which is worse. I can't see straight to write, my words come out in strange orders. I lose my train of thought, forget what I'm doing. I guess my way of explaining someone with chronic fatigue, is to say no matter how well they look, their not! Their existing daily in some of the worst pain you've ever felt. No amount of rest fixes it.
—Guest Rose

How I feel about ME

When I smile I feel a hole, a heaviness inside, a place where I am empty, a feeling I cannot hide, I try to smother this sadness, with friendliness and smiles, I fill my heart with gladness, yet secretly all the while, you coil tightly around my heart, I feel your weighty chains, you try to tear me apart, but I will not play your game, so I carry on with smiles, and laughter too and hope, that one day you will loosen, and let me free to cope.
—Guest Sesha3

Every chore is like doing a marathon

I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.
—Guest missjanny

A book to help You explain cfs/me

I have written a book that aims to help people with CFS/ME explain it to their loved ones and help them to be a better support. I have CFS and it is the book I wish had been available to me when I was at my illest. It's called CFS/ME support for family and friends and had loads of case studies echoing everything people have said here. One of the worst things is how little others understand of it, I hope I've addressed that a bit.
—Guest Elizabeth turp

flu bug

At the beginning, the first couple of years was just like that, like having a really really bad flu, and just so weak, dizzy, achy, my brain hurt, eyes always wanted to shut. Now that just happens sometimes, although excitement over things that ask for energy are still low.
—cathysintersection

Having cfs

I have had cfs for a year and a half now.i got it from having glandular fever,i was very fit and active being a fitness instructor.the only exercise i can do now is a little bit of walking.i dont think people really understand how debilitating this illness is.its like having the glandular fever all the time.i would so like to know if it will ever go as it would be very hard to accept that i will have this forever.
—Guest Jay

A light at the end of a very dark tunnel

This sums up my life. I have coeliac disease & arthritis,but also fatigue,short-term memory,sleep issues and restless,ache muscles. I now believe I have genuine illness and as my daughter has FMS,it seems I do have it or CFS too. Thanks 4 a great explanation.
—Guest kate hooper

Not Enough Words....

I really appreciate everyones' input here. It's so nice to not feel so alone in it - to feel justified in the reality of this illness. I get so frustrated wasting my precious energy trying to plead my case to friends and family who don't/ won't understand. In my "former" life, I was a happy mother of 2 with a full time job who ran 1/2 marathons. Now, I consider it a good day if I can make it to work & the kids have socks to wear. When I try to explain how I feel, I say it's like waking up, slamming a night-time theraflu or perhaps some cough syrup with codeine in it and then force yourself through your day. The pain I have in my back feels a lot like mild back labor amd I feel like I have the flu. I find it really helpful to divide my day into manageable segments - say 2 hours at a time. I find peace in achieving those small goals I set for myself. My prayers go out to all of you. They WILL find a cure for this.
—Guest one tired mama

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