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Readers Respond: How Do You Explain Chronic Fatigue Syndrome?

Responses: 51

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Updated September 14, 2009

NHS - no help, skiver

I went down with CFS about 15 years ago. It took over 3 years to get a diagnosis from a specialist NHS ME unit. Diagnosed formally or not, my experience since is that GPs treat CFS patients with contempt. Several GPs have simply told me 'CFS doesn't exist', others that 'its just a depressive illness', one even wrote 'hypocondriac' on my records. If you get CFS in the UK, expect ridicule from the NHS.
—Guest The Duke

Hit by a train and dragged 500 yds.

feeling like you look fine, but knowing that you are not fine. Taking on too much, and paying for it for days afterward. Wanting to do so many things, but knowing that i cannot anymore. The worst is trying to keep up with my two best girlfriends, then having to cancel; don't know that they understand. I know my own family does not. I don't get invited places with them because I cancel too much because of the pain, and it seems like they don't even want to reach out to me to see how I am doing. That hurts, but what they don't seem to understand is this disorder hurts, too. So, double whammy and no family. Don't get me wrong, I have a great life with the man in my life, my living Buddha, who gives me the wisest of life's lessons, and I am grateful that he loves me unconditionally, as I do him. U see, he is a quadriplegic with his own issues, but he never complains about anything. he is inherently lazy, though, and I never have been. I think it has been easier for him, not for me!
—louisa1958

I use big words

I have had CFS/Fibro for 11 years. I recently discovered that CFS has been classed by the World Health Organisation as a Neurological Disorder since 1982!! Why doctors & other health professionals dont treat it as such is a disgrace in my opinion. I figured out it was neurological pretty early on & have made repeated requests to be sent to a neurologist with no success. My point is that doctors ,nurses etc have no excuse for not knowing what CFS is & giving appropriate understanding & treatment to sufferers. As for explaining my illness to others I find that telling them I have Fibromyalgia gets a better response than saying I have CFS. They dont want to appear stupid so they usually accept my explanation of chronic pain & fatigue without further comment. I have stopped expecting people to understand now,that helps too, but it still hurts to be accused yet again of nut trying hard enough or not wanting to do the things that others take for granted.
—Guest Frustrated

accepting/hoping

Before full-fledged CFS (and FMS) 4 years ago, I would get periods of being in bed with flu/not flu during holidays and weekends. I had experienced 3 family suicides after which my husband left, a highly stressful work environment, almost completing a PhD when my advisor developed cancer and disappeared and I gave up, losing a friendship and on and on. I was stressed to the max and so ignored symptoms until co-workers insisted I go to the doctor. Since my sister had lupus (rediagnosed as chronic polymyositis) and my blood tests indicated lupus, I was sent to a very famous rheumatologist who said I had Fibromyalgia, not lupus, although they can go together. I cheered until she told me I would still have a very hard time with my symptoms. My husband had just been diagnosed with Parkinson's, so the stress continued. I kept being denied sickness insurance until the name of the rheumatologist was given. So I finally had money. Everything above describes me. I live day to day.
—Guest carol Merson

Didn't get the chance to live

I think that the worst time to get M.E is as a teenager. I know its incredibly hard as an adult too, but isn't it worse when you didn't even get to experience life before it was stolen from you. I became ill with ME age 11. I turned 16 last month and still, I'm not in school, I don't see my friends and I'm depressed. Next year I have to do A-levels and have no where to go, because so far, I can't find a school that'll take me for only one course. It's been terrible, I've been depressed, still am, I've just got better at hiding it. There is a serious possibility that it will never go away; I'm gonna live the rest of my life stuck in a cage. This horrific illness locked me in a cage and threw away the key. I'm slowly getting better, but I feel like I have to be so serious all the time. I never get to have fun. before I can do anthing, I have to think about the next few days to work out if I can afford to do that. I might need the energy for hospital or something. It's just so hard. :'
—Guest JB

what does cfs feel like?

Energy. I have come to hate that word. It feels like an elusive concept, never to be had again. To a non - sufferer of CFS: Imagine not being able to get up at will, open your eyes wide enough, focus on driving, not being able to make plans, not able to work or have energy to care for your children, let alone play with them. Standing up is a major accomplishment, despite the dizziness and instability. Imagine being intolerant to heat and cold, unable to enjoy the sun, without feeling ill. The difficulty in trying to maintain positivity, after yet another day on the couch, or in bed. A flu that never goes away. There are moments of 'normalcy' that feel as beautiful as life could be. Then, it is gone, and back to the flu/fatigue/cfs. It is way beyond 'fatigue'. It is a whole body, system wide malfunction. The name is very unfortunate, because EVERYBODY inevitably says 'I have that, too!' Believe me, if you can get up without thinking of the consequences, you don't have CFS.
—Guest mom2-4

Chronic fatigue

When I try to explain my fatigue to someone else who has never experienced it, they often ask what the difference is between between being tired and fatigue. I tell them when I'm tired, I feel like sleeping but when I feel fatigued I feel as if when I stand up I'm going to melt into a puddle. I just don't have the energy to do anything! I don't feel tired. I too feel guilty like others because I just can't myself get out of bed or off the couch to do anything. I get depressed because I look around me at all the things that I would have done years ago but no longer have any energy to do. What makes it worse, is that now the pressure is on my husband to do almost all the housework when he rarely had to do any before. He's good about doing it and I try to do what I can on my good days but then I have to be careful not to overdo it or I will pay for it the next day or even 3 or 4 days. So, the best solution for me is to just pace myself on my good days and on the days I try to do my art.
—Guest Ponder

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

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How Do You Explain Chronic Fatigue Syndrome?

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