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Fatigue


lavender
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One of the main things I deal with is an overwhelming fatigue. I always feel like I struggle to accurately describe it to doctors. It's more than just being a little tired all the time. It frustrates me when I can't explain it in a way that really descibes how it feels. For others here with overwhelming fatigue, how do you explain it?

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I also have great difficulty with this. There are times when I tell them that i feel like someone with heart failure, extremely short of breath just doing nothing, or talking, entire body feels like it has no energy, like it is sucked right out of you. To do anything, even laying- just often feel like I don't have enough oxygen or something. Very hard to describe, not an issue of being as much sleepy tired as complete body fatigue. When I had the CFIDS onset - I always said I felt like a rag doll. Now, I feel that doesn't even adeqauately describe it.

There are multiple other symptoms that comes with the body fatigue for me as well.

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Hi I feel basically, the same way that Nadine describes . I feel like I have no stamina,when I'm walking,I feel like someone or something is pushing against me almost like I am running out of gas. I know that it is hard to explain.Everyone thinks I am tired all the time,that's not it.It's more like being worn out and being ill rather than tired.

Well now that I am writing this,I find it is really hard to decribe! I don't if this makes sense, but it is how I feel.

Pat

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I struggle to describe fatigue too. I usually tell people that after getting home from work on a Friday that I go to bed at 7pm and usually sleep until 2pm on Saturday and still feel tired. I then ask them to imagine what it must be like for me the 1 in 4 weekends that I have to work until 9:30pm on Friday and then 9-5pm on Saturday and Sunday followed by another whole 5 days at work. As my colleagues understand our draining shift patterns this usually helps them to understand (although I work fewer hours than my colleagues and no longer work weeks of nights).

Being tired is different to being fatigued! Tiredness is relieved by sleep, fatigue is not.

Flop

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It is incredibly hard to describe the fatigue. I think someone has to experience it to fully understand.

I used to be a year-round competitive swimmer, so I liken the feeling to that of just having finished a 200 meter race when you've given it all you have. You get out of the water and all of your muscles feel like jello. You CAN take walk a short distance, but you feel like your muscles could give out at any time. There is muscle there, but it just doesn't want to work!

It also feels like your legs and arms weigh 3 times their actual weight. Moving and lifting can take thought and great effort. If I push myself too far then I end up stumbling or dragging my feet. And sometimes I just collapse. And that can happen by just standing up and walking across the room on a bad day.

It is so much more than the normal tired that healthy people experience. When someone is a healthy tired then they can keep pushing themselves and be fine. Sleep it off and they're back to normal the next day. But we can't just keep pushing ourselves. With the fatigue we face it doesn't matter how much we rest; it doesn't go away.

Well, I'm rambling. And I still don't think I've adequately described the fatigue!

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Rachel,I use the term you used in your post "normal tired", all the time.I don't think non-potsys get it. P

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Pat,

You're right. Non-potsies don't get it. It drives me crazy when healthy people complain that they're tired at the end of the day. Maybe they tell me because they think I'll understand and be sympathetic since I'm tired all the time. But it just makes me want to scream!!! They have no idea what tired can really be all about! And there just isn't a good way to explain it. The feeling is completely foreign to those that are healthy.

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Rachel, I think you described it really good.

I use to say that my battery is empty... It seems that they have turned the light off and moving or talking needs a lot of energy that you do not have...

It is extremely difficult to express in words...

Sometimes, when I have it while I am walking I have brain fog and all my movements are very weak and slow. My legs weight tons and I feel I am going to pass out...

And I agree, being tired is completely different to being fatigued... I can sleep and when I wake up the next morning I am having the same feeling...

Love,

Tessa

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Guest tearose

Fatigue to me...

My brain says go and my body says NO!

I say I get out of bed and feel like I take my body by the nape of my neck and drag it on the floor into the kitchen. I feel like a rag doll.

My body laughs and says "what are you thinking"?

Fatigue is when you do one normal action and instead of needing a few minutes to recharge you need a few hours. Like after cooking dinner, I may actually not be able to clean up till the next morning!!! And I HATE dirty dishes in the sink!

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When I discribe the weakness and fatigue I think I have found a good analagy. I usually ask if they have ever had a bad case of the stomach flu. Then I and ask them to remeber how hard it is to move from the bathroom floor to the bed. Then I explain that my fatigue is like this, however it can last weeks and months, even years.

I have had some family members who have been less than supportive over the years. I have found that they are more receptive to understanding my fatigue right after having a bad bug themselves.

I hope this helps.

Rhonda

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I usually feel like I am a 5 foot person walking through 4 feet of jello. My arms and legs weigh 1000 pounds, and sometimes i can barely lift my head. it's not even like I'm sleepy...it's beyond that. it's one of my very worst symptoms anymore.

I am so deconditioned that my muscles burn like I'm in my first day of PE and had to run that mile thing they always do, after lying around all summer.

Anymore, i don't really have to describe it, my couple of docs say they just have to look at me to see it. Fatigue is a major bummer......

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Most ppl seem to understand fatigue best in terms of what the person CAN do, rather than how it sensationally feels. Like for shortness of breath, I kept telling doctors it's hard to breathe, I can't breathe, I feel winded, it's as if someone belted my chest so I can't take a breath really well....they just bypass all the "feels like this" description (which, by the way, many doctors hear psychological/hypochondriasis symptoms in detailed "feels like this" complaints rather than believing the physiology of it) and they ask, "How many stairs can you climb before you feel out of breath, stop for air, or start to breathe heavily?" When I say, "STAIRS! Oh my God! Like, maybe two." Then they finally understand (believing is different, always).

Fatigue...It helps to describe also in "I can do...before I have to stop due to fatigue" terms. Like it seems to turn the light bulb on in a listener if I just say, "If I vacuum and wash the dishes in the same day, I will faint." I guess the fact that I faint so much and so easily makes it easy to show ppl how tired I am...although they're not necessarily related.

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Morgan-

I love how you describe the feeling of walking through 4 feet of jello and the 1000 pound weight of arms and legs---

It takes enormous amounts of energy to move this body -other than the rag doll feeling,it also feels like cement is being poured in me,especially when I am up and trying to move. The longer I am up, the worse it gets :lol:

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Yeah, one of our big challenges is figuring out how to describe how we are or feel to others like doctors or people who care. I have been learning about "framing" stories to best make your point.

I have heard that it is best to be positive in the sense that "I am walking through jello" gets through better than "it is not normal tiredness". People don't hear "not". (When you say "It's not anxiety", they hear "It's anxiety", for example.)

So saying that you have had a vampire drain your blood, you are pulling your 1000 pound body through mud by the nape of your neck, etc., are images that stick, even to doctors. Then you can get technical, but images really help.

You are all very creative, by the way.

OLL

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