Chronic Fatigue Syndrome: a post about it.

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Originally Posted by WingedWolfPsion

Yes, I have chronic fatigue syndrome. My symptoms began when I was in my mid-teens, but I wasn't diagnosed until I was in my early 30s.

Diagnosis is by process of elimination--sleep study, full bloodwork to check for thyroid problems, for Lyme disease, anemia, etc etc. Psych evaluation for depression...the whole 9 yards.

CFS isn't just fatigue. It's more like feeling constantly that you're coming down with the flu. Exercise or exertion--including mental exertion--results in what's known as 'post-exertional malaise', which means you get exhausted and sick (including muscle and joint aches, headache, digestive problems, low-grade fever, swollen glands), and it can take anywhere from 24 hours to several weeks to recover from it (depending on your condition, and what it was you did to 'earn' it).

The fun part is, post-exertion malaise can set in immediately after exertion, or it can wait a couple of days to hit. Symptoms are transient and unpredictable--you may feel like hell in the morning, but be ok in the afternoon...or vice versa. You may be nearly bedridden for days, or you may be able to go out and do things, and be 'almost normal'. But you never wake up feeling refreshed and rested, and you never truly feel completely well.

Some days, I get to take my kids to the zoo and walk around for 3 hours...other days, walking up the stairs has me gasping like a stranded fish for 15 minutes.

This makes holding down a full time job on a regular schedule virtually impossible for anyone who has more than very mild CFS. I had to give up that idea. I tried to get disability, but after a year, was denied--so I appealed. In the meantime, I figured out how to start up a home based business I could actually handle. TWO YEARS later, they got me a court date on that appeal. ... >.> You can imagine my reaction.

I'm building a reptile business now, and I have help from my husband and friend when the workload gets too heavy. Fortunately, ball pythons are pretty darned easy to take care of, and since I can make my own hours, it is working out well.

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Yes; malaise; you have hit the nail on the head. It is much more than simple fatigue, really. And soooo random; that fits me to a tee. I tried even making a journal, to see if certain foods/sleep patterns/activities worsened or bettered things; no dice. Seems completely random. I am at the mercy of my body; some days, I can work 8 hours, come home, and clean for two more. Other days, I can literally not even get up to go to the bathroom unless I mentally force myself at gunpoint, heh.

I have been using alot of sick days; I am teetering on getting a writeup for it. Eventually, I plan on helping out with hubby's tattoo business and therefore being self employed; I am sticking it out somehow fulltime as an admin with a bank, for now. Perk: sitting down to work. I can allow myself some zone-out time sometimes between calls and while this does not take away the fact that some days are unbearable, like today, it helps better than, say, if I worked as a waitress or something else active.

See.. I am so glad that you mentioned that it feels like the flu. I did not really think of describing it that way; but it is definitely, perfectly how I feel at my worst days. (like now.) Almost like someone shot me in the arm or leg with a tranquilizer gun. I did get diagnosed with Fibro by my doctor 2 years ago as well; although I don't have the severe pains that some have, I do get those on and off. A dead-limb, feeling-like-jelly feeling is more common for me.

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Originally Posted by twh

is a sleep study in order ???

oops double post.

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I did not really think of this. I am a dead sleeper though; I do not even wake up in thunderstorms or during fireworks, lol. No snoring or sleep apnea, either; my husband says that I sleep pretty normal, at least to the layman's eyes.

I find though, that in my chronic fatigue, I do not feel "sleepy" tired all of the time. It is more like, I just feel like if I do not lie or sit down, I will get dizzy and be overtaxing myself. If I try and nap, like if I did now, I would wake up groggy. I cannot even really nap during the day because of mental "feeling like I am missing something" feelings.

I know that there are other things out there with copycat symptoms, like something called hole-in-gut, or something like that. Things that deplete your body's nutrient absorption. I just feel in my gut that it is cfs; with the epstein-barr/fibro connection..

I do not think that this is depression or clinical depression. I do not have the noted "lack of desire to do things you once enjoyed." I desire very much to have fun and do the things I enjoy.. and to plug on at work and earn that money.. it is just my body saying "hold on.. no."

The heat is not helping me either! It is over 90 degrees up here. I am going swimming with my friend in a pool later on; hopefully this at least makes things more bearable. She's the understanding friend I mentioned earlier.

No, CFS is not depression. People with CFS do sometimes become depressed--because it's depressing not to be able to do everything you want to do. But we aren't clinically depressed in the vast majority of cases.

It's also not Fibro, but some symptoms overlap. I often think of Fibro as primarily about the pain, with some fatigue on the side, and CFS as primarily about the fatigue, with some pain on the side. :P

The most important thing to learn is pacing. If you work for 8 hours and feel fine...don't clean for 2 more. Rest. It sucks, but if you do it that way, you will have less of a rebound, and you won't feel so horrible the next day.

If you don't feel up to doing something, and it doesn't absolutely have to be done right then--don't do it. You can't fight through CFS by forcing yourself to do more--that results in worsening symptoms. The only way to get CFS to back off (and it doesn't always work) is to reduce your activities until they are under the threshold that makes you sick. Not at it, or over it, but under it, every day. And that's going to change every day, too.

I did test positive for having had Epstein Barr virus, but 95% of all people in the US will have had this virus by the time they are 40! Its significance in CFS is therefore in question.

There is a new and far less well-known virus that they are looking at right now. It's called XMRV (Xenotropic murine leukemia virus-related virus -- quite an awkward mouthful). Initial results were promising, but further testing has been more discouraging. This is a retrovirus.

The down-side. No one knows much about this virus or what it does, and the testing is all over the chart as to whether it's common in CFS patients.

The up-side. If it IS a cause of CFS, then anti-retroviral drugs for HIV might wind up proving useful for CFS. For those of us who are sick and tired of being sick and tired, the side-effects may be worth it.

And, oh yeah--if it is XMRV, CFS might be contagious. >.< They are recommending that those with CFS do not donate blood at this time, until more is known.

They have only the most vague understanding of what's happening in CFS. They believe it has something to do with stress. The genes that control stress reactions are abnormal in people who have CFS. It looks like the normal recovery reaction that is supposed to occur after stress doesn't happen the way it's supposed to.
This genetic abnormality is actually in keeping with the idea of a retrovirus as a cause--retroviruses can re-write DNA that way.

I have MS, and with it CFS, but I do not have the typical MS summertime symptoms. In fact, with the medicine I am on the worse thing for me are migraines. If you truly are concerned about the possibility, talk to your doctor about maybe getting a referral for a neurologist. They can then do a spinal tap, which will help rule things out.

MS is one of the things they test for, to rule it out, when making a CFS diagnosis.

Chronic fatigue is part of MS...but Chronic Fatigue Syndrome is a separate illness.

MS is one of the many illnesses that can mimic the symptoms of CFS.

I don't have CFS, but I can definitely relate. A little over a year ago, I started getting headaches, which quickly progressed into a debilitating, mind-numbing migraine-type headache, the first of which lasted for four months. Missed prom, graduation, and all of that, and I don't remember hardly anything. Since the first one, things have gotten slightly better, and although I have a headache almost every day still, they're mostly at a level I can handle. They don't have a trigger and seem completely random, morphine barely even touches the pain when they're bad, and the several doctors I've been to have no idea what it is.
I can definitely relate to the part about convincing people that it's not all in my head. They make me sick, like the flu, and so tired I feel like I could sleep for years and still be tired, but it's not something people can see, so I must be making it up, right?. And it's definitely not depression; I'm pissed at these headaches for ruining the last year of my life. I just keep trucking along and hope that some doctor somewhere will know how to fix this.
Just keep trying and pacing yourself, and when you have insurance, see as many doctors as possible. I've got a chiropractor coming up, so who knows what could make you feel better. Although a cup of tea and a little bit of ice cream usually make me feel a little better, lol. :P

before the diagnoses, did yall exercise daily?....

Sorry i cant post about it...im too tired :D

I wouldn't say I exercised daily--I was just fairly active, and outdoors a lot, running around in the woods and fields looking for critters. I spent my summers walking through the woods, fishing, swimming, and scrambling over hills in a gravel pit looking for interesting rocks. I was a kid, after all. This didn't start til my mid teens.
I would come home from school exhausted, and just pass out for an hour or two. I noticed I had a set amount of effort I could put into schoolwork...I would pull one grade up, only to see another had fallen, on report cards, even though I was doing my best. Turn a B into an A in one class, and watch a B turn to a C in another. Unfortunately, my parents must have just thought I was staying up too late.
My father even grilled me once, and accused me of being on valium. >_>

I got my first job, held it down for a year amid mysterious bouts of illness. Got a diagnosis of a hiatal hernia causing vomiting, but still no idea something else was wrong at that point. Left the job, chalked up the sickness to stress (it was a collections call center). I was beginning to suspect something else might be wrong, though.

Scraping by from part time job to part time job, I just couldn't afford a diagnosis. By the time I tried to get one, I was already certain I had CFS, simply due to the accuracy of the symptom list. CFS wasn't supposed to be contagious, and its cause was unknown, so I thought having kids was worth the minor risk. On Medicaid, I went through the whole process to get an official diagnosis. Now, I just hope that my kids don't wind up with it. Neither of my parents had it, nor my grandparents. They still don't know the cause.

My doc threw various drugs at me to see what might help. I finally put a stop to it after about a year, sick of being a guinea pig. Since some antidepressants helped some CFS patients, I got to try a whole medley of those things. All I got from them were side effects, mostly unpleasant ones. (One drug, some sort of steroid, was so bad, I took to calling them 'my unhappy pills'...made me very cranky, lol).

There is an anti-narcoleptic drug that's useful sometimes, called 'Provigil'. It isn't to be taken regularly, but if you absolutely have to get something done, it can give you the boost to get through it.

As far as currently available drugs are concerned--don't bother. I'm personally holding out for something actually designed to treat CFS, and until then, I think doing nothing is better than turning my body into a pharmacological experiment. Doctors all seem to think that doing something is ALWAYS better than doing nothing. >.< Obviously, CFS teaches us otherwise.

Oh, and since we're all complaining, how about that 'mental fog', short-term memory loss, and having the attention span of a gnat when you get tired? :P

Heck yeah, the mental fog and sluggishness. It's enough to make you think you were crazy by itself without the rest.
I've done exercising before, and trust me, it sure didn't help. I was on very active jobs, including commercial fishing before I was about 20. I work a fairly physical job now and it can be a real struggle, but I get by. Sheer stubbornness is all that gets me there some days, but.. it's hard. I swear sometimes that I honestly feel like I can't lift my arms.