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alias_sqbr) wrote2009-08-05 09:06 pm
alias_sqbr) wrote2009-08-05 09:06 pm
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Advice for people with chronic fatigue (which may or may not be chronic fatigue syndrome)
I encounter a lot of people who have fatigue chronically but aren't sure if they have Chronic Fatigue Syndrome asking me for advice. Here's some advice based on my personal experience, and thus possibly entirely wrong for people who don't have cfs.
First off: You have my sympathies. Fatigue sucks. But things will hopefully be ok.
Second: Take it seriously. See a doctor and get tested for things like thyroid function, iron levels etc. There are some really serious, even deadly illnesses which can cause fatigue.
And CFS isn't serious in the sense that it will kill you(*) but if you ignore it and push yourself you can get very sick. As in bedridden, on a ventilator sick. Or at least as sick as me, which is sucky enough.
Third: If you're trying to figure out if what you have is Chronic Fatigue Syndrome, afaict the two deciding factors are (a) Post exertional malaise: feeling much worse after even relatively mild exercise (b)Not having any other obvious cause. Links tend to break but here's some more details. My personal experience is that on a good day, when I barely moved and got lots of naps, I feel like it's like 4am after a long day of carrying rocks with no sleep.
Most doctors are awful at dealing with cfs. Don't ignore them entirely, but research things yourself and learn when to trust your own judgement.
I have a list of recommended doctors from the Chronic Fatigue Association of WA but in the end didn't find it that useful, there's too many woo quacks pushing miracle cures. Some of the alternative stuff has been mildly helpful for me but most hasn't. I've had better luck with competent regular GPs. Some people have had success with alternative treatments, but be very cautious about anything which either costs a lot of money or starts to make you feel worse, no matter how convincing the doctor or other patients are. This includes the more conventional "cures" graded (gently increasing) exercise and psychological therapy, both of which work for some people but have been proven scientifically not to work on average. If there was a guaranteed cure we'd know, and exercise usually does more harm than good.
"New Potential Cures" come up in the news every now and then, I like to think one of them will work out eventually but don't get attached to the idea, you'll just feel sad when it doesn't happen quickly.
If, like me, you have Post Exertional Malaise, it is vitally important to avoid unnecessary exercise, especially anything that makes you feel puffed or strained, even if you get a temporary endorphin high it will make you sicker long term.
Apart from generic chronic illness advice (don't push yourself, eat healthy, avoid stress and stuff that makes you sick like known allergens etc) treatments which help one sort of chronic fatigue doesn't always help another and may make it worse. This is even true for people with diagnosed chronic fatigue syndrome. The most important thing I've found is learning to be in touch with how my body responds to stuff and changing my behaviour accordingly. You can see some of the specific things I've done on my cfs tag, and cfs support groups can be useful. I used to like![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-community.gif)
cfids_me back in the day.
The only med that has really helped me with cfs specific symptoms is PEA/Palmitoylethanolamide for the pain, plus paracetamol.
It's good to try and figure out what if any behaviours etc trigger flare ups, but whatever you do you'll have ups and downs for no apparent reason, varying from day to day, month to month and year to year. I find I'm happiest if I just roll with it as best I can.
Pacing is vitally important, avoid the cycle of doing too much on the days you have energy and crashing afterwards. It makes sense to do a bit more on good days, but spread things out enough to avoid crashes, even if it means forcing yourself to rest sometimes when you feel antsy and forcing yourself to push a bit when you feel tired. Avoid relying on caffeine.
One of the hardest parts is learning to say no: to doctors pushing for exercise you know will make you sick, to friends who don't understand why you need to leave social situations early or not go at all, to employers and family who think you're just lazy. It's tempting to push through to satisfy these people, but this will just make you permanently sicker and even less able to meet their impossible standards. So just say no now. Yes, it's hard, but it will only get harder if you put it off. Believe in yourself even if noone else does.
Some good news: the more you look after yourself the more likely your symptoms are to stabilise. And for me at least, though my symptoms have never improved the experience of being sick has gotten much less awful over time, when I first had to stop working I became horribly depressed about my life, but at this point I am happier than I was when I was well. Being sick didn't make me happy, that was other things, but it hasn't stopped me having a happy life.
But again: Take it seriously. Don't ignore it and tell yourself you're being lazy. Give yourself permission to take breaks and do stuff that makes you happy rather than feeling guilty about all the stuff you're not doing. You need to set your goals and expectations so that they are as achievable and rewarding for you as a healthy person's are for them. Whether it's psychological or physiological, or both, if it's making you miserable and screwing up your life then beating yourself up about it and ignoring it is not going to help. Figure out what's wrong, and if it can be fixed fix it, otherwise learn to change your life to work around it.
(*)People have died but it's incredibly rare
First off: You have my sympathies. Fatigue sucks. But things will hopefully be ok.
Second: Take it seriously. See a doctor and get tested for things like thyroid function, iron levels etc. There are some really serious, even deadly illnesses which can cause fatigue.
And CFS isn't serious in the sense that it will kill you(*) but if you ignore it and push yourself you can get very sick. As in bedridden, on a ventilator sick. Or at least as sick as me, which is sucky enough.
Third: If you're trying to figure out if what you have is Chronic Fatigue Syndrome, afaict the two deciding factors are (a) Post exertional malaise: feeling much worse after even relatively mild exercise (b)Not having any other obvious cause. Links tend to break but here's some more details. My personal experience is that on a good day, when I barely moved and got lots of naps, I feel like it's like 4am after a long day of carrying rocks with no sleep.
Most doctors are awful at dealing with cfs. Don't ignore them entirely, but research things yourself and learn when to trust your own judgement.
I have a list of recommended doctors from the Chronic Fatigue Association of WA but in the end didn't find it that useful, there's too many woo quacks pushing miracle cures. Some of the alternative stuff has been mildly helpful for me but most hasn't. I've had better luck with competent regular GPs. Some people have had success with alternative treatments, but be very cautious about anything which either costs a lot of money or starts to make you feel worse, no matter how convincing the doctor or other patients are. This includes the more conventional "cures" graded (gently increasing) exercise and psychological therapy, both of which work for some people but have been proven scientifically not to work on average. If there was a guaranteed cure we'd know, and exercise usually does more harm than good.
"New Potential Cures" come up in the news every now and then, I like to think one of them will work out eventually but don't get attached to the idea, you'll just feel sad when it doesn't happen quickly.
If, like me, you have Post Exertional Malaise, it is vitally important to avoid unnecessary exercise, especially anything that makes you feel puffed or strained, even if you get a temporary endorphin high it will make you sicker long term.
Apart from generic chronic illness advice (don't push yourself, eat healthy, avoid stress and stuff that makes you sick like known allergens etc) treatments which help one sort of chronic fatigue doesn't always help another and may make it worse. This is even true for people with diagnosed chronic fatigue syndrome. The most important thing I've found is learning to be in touch with how my body responds to stuff and changing my behaviour accordingly. You can see some of the specific things I've done on my cfs tag, and cfs support groups can be useful. I used to like
cfids_me back in the day. The only med that has really helped me with cfs specific symptoms is PEA/Palmitoylethanolamide for the pain, plus paracetamol.
It's good to try and figure out what if any behaviours etc trigger flare ups, but whatever you do you'll have ups and downs for no apparent reason, varying from day to day, month to month and year to year. I find I'm happiest if I just roll with it as best I can.
Pacing is vitally important, avoid the cycle of doing too much on the days you have energy and crashing afterwards. It makes sense to do a bit more on good days, but spread things out enough to avoid crashes, even if it means forcing yourself to rest sometimes when you feel antsy and forcing yourself to push a bit when you feel tired. Avoid relying on caffeine.
One of the hardest parts is learning to say no: to doctors pushing for exercise you know will make you sick, to friends who don't understand why you need to leave social situations early or not go at all, to employers and family who think you're just lazy. It's tempting to push through to satisfy these people, but this will just make you permanently sicker and even less able to meet their impossible standards. So just say no now. Yes, it's hard, but it will only get harder if you put it off. Believe in yourself even if noone else does.
Some good news: the more you look after yourself the more likely your symptoms are to stabilise. And for me at least, though my symptoms have never improved the experience of being sick has gotten much less awful over time, when I first had to stop working I became horribly depressed about my life, but at this point I am happier than I was when I was well. Being sick didn't make me happy, that was other things, but it hasn't stopped me having a happy life.
But again: Take it seriously. Don't ignore it and tell yourself you're being lazy. Give yourself permission to take breaks and do stuff that makes you happy rather than feeling guilty about all the stuff you're not doing. You need to set your goals and expectations so that they are as achievable and rewarding for you as a healthy person's are for them. Whether it's psychological or physiological, or both, if it's making you miserable and screwing up your life then beating yourself up about it and ignoring it is not going to help. Figure out what's wrong, and if it can be fixed fix it, otherwise learn to change your life to work around it.
(*)People have died but it's incredibly rare
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Sadly, there's been a death in the news (a while back, this was the inquest report) just this week (http://www.eastbourneherald.co.uk/news/Teenager-took-his-life-after.5513722.jp).
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Oh absolutely. And there's a lot of internalised crap to wade through as well.
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As you know, I find them useful & fascinating. ^_^
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Your recent post really hit me for six; I'm concerned about my decline during honours, and there's Dr.Sophie who has a PhD and is in this really lame situation. It sucks that no matter how smart, nice, generally a Good Person you are, you can get kicked up the arse by life.
But I agree, if there's something really wrong with you, at least talk to a medical person you trust. For instance, I trust my GP to tell me I'm full of shit, but listen to me and carefully consider where I'm coming from first. I really hope people have someone like that they can go to.
There's an "epidemic" of people feeling tired and crappy lately. I really don't know what I can say about that.
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I've noticed that, too. It's probably the main reason I still haven't bothered to go see a different GP in the hopes of getting a referral to a sleep specialist; there's all too high a chance that I'm just one of the many people who sleeps shittily and feels tired all the time because of our crappy modern-day lifestyles.
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But I agree, if there's something really wrong with you, at least talk to a medical person you trust. For instance, I trust my GP to tell me I'm full of shit, but listen to me and carefully consider where I'm coming from first. I really hope people have someone like that they can go to.
Yeah, for a long time I didn't, and it made things very difficult.
There's an "epidemic" of people feeling tired and crappy lately. I really don't know what I can say about that.
Me either, though in my case some of it is the selection bias of talking about my health issues and thus getting friended by people with similar health issues.
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