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I remember waking up feeling fine, went to take a shower came out and have been sick ever since. Anyone else remember the exact moment, or our most people's brought on by having a virus first?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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What is your condition now? Have you went down hill from where you were or do you think you have gotten a little bit better? @valentinelynxI was fine, in excellent physical condition, until one day, on the way back from a hike in the woods near our house, when I suddenly felt really bad: leaden, tired, like I'd suddenly gotten the flu or something. That was the beginning. I have never felt well since. However, it took me a couple of years to admit there was something persistently wrong with me. Denial is strong in this one...
What is your condition now? Have you went down hill from where you were or do you think you have gotten a little bit better? @valentinelynx
It's quite scary at first in general, as your future is so unknown still. I have definitely read about several others who remember the exact moment. I think an important factor in decreasing the severity is to get plenty of rest initially. I've read about plenty of people who just kept "pushing through" because that's what our society and everyone around us expects, but then they just crash badly. Learning about pacing and accepting it as an important part of your life really helps - I found this website super helpful: http://www.cfidsselfhelp.org/library/topic/Energy+Envelope+and+PacingI'm scared that since I can't find anyone like me on here that I am going to become very severe case, since this whole thing is very new @purrsian
I think this is so important. It's so hard to do! It's important to really identify with the fact that you are an actually sick person - I found it so hard to rest because I didn't really think of myself as being actually physically sick, so I kept insisting on doing things despite how I felt. The science is finally starting to prove that we have a very physical debilitating condition and we need to treat ourselves like we have one instead of just pushing through. Our bodies don't seem to be producing enough energy for our cell's to function right, and rest reduces our energy needs, allowing our bodies to function better. If you keep using more energy than you're making, then you just get sicker and sicker.If I had it to do over, I would have TAKEN IT VERY EASY for a year or two after getting sick, rather than pushing, pushing, pushing to "get back in shape," and starting medical school. Intensive rest seems to be key to recovering early. It's hard to do, though, when you think that any day now you'll feel better... But that's my recommendation: REST NOW and you may have a life to get back to.
I'm not just sure I have m.e, I think I have a severe case of it in almost 3 months. Also all I have been doing since I fell ill was saying in bed all day everyday unless to get food or something. So this whole pacing thing in the very beginning does apply because I can't pace anymore than I already am. I guess I do have Pem but I never tested myself much at all since being sick just been trying to rest as much as possible but I feel horrible all the time. I'm scared since I can't find anyone really like me on here that it's because those are the severely ill who can't even get on a computer or phone.I remember waking up on a friend's sofa the morning of 1st January 1998 with badly swollen glands. Later that week I drove back to Bristol and I can remember collapsing on my bed with the first ever experience of the horrible post exertional fatigue, qualitatively different from any previous tiredness.
Technically this was me coming down with glandular fever (EBV/mono), confirmed by blood tests, but I don't know when this blurred into ME. So my answer is both yes and no. I definitely had a virus trigger.
I've had a lot of contact with pwme and I've never noticed a correlation with type of onset and severity. This doesn't seem like something worth spending energy worrying about.
I agree it is unusual to have specific time onset without a trigger. My understanding is that some people have a vulnerability to ME but there needs to be an environmental trigger which disrupts the body's normal way of functioning and becomes dysfunctional (perhaps as a perceived adaptive state to keep the body alive) or that the ME starts to express itself (epigenetics). Usually the trigger is a virus but appears to sometimes be other things like harmful chemicals, bacteria infection, surgery. This isn't certain but seems to be what happens.
@nikefourstar are you completely convinced that you do have ME? Do you have delayed worsening symptoms after activity? I have no idea either way in your case, but a lot of people are misdiagnosed.
I had a period where I was like this. I have no idea when exactly it was, or how long it lasted, because it was such a blur. I spent all day in bed watching TV or using my computer or napping, I didn't shower everyday because it was just too hard, I didn't even get up for food much because my mum brought it in to me most of the time. I often ate while still mostly lying down, just a little propped up but not sitting up. I think it lasted more than a month, it seemed like forever so it was probably a few months.I'm not just sure I have m.e, I think I have a severe case of it in almost 3 months. Also all I have been doing since I fell ill was saying in bed all day everyday unless to get food or something. So this whole pacing thing in the very beginning does apply because I can't pace anymore than I already am. I guess I do have Pem but I never tested myself much at all since being sick just been trying to rest as much as possible but I feel horrible all the time. I'm scared since I can't find anyone really like me on here that it's because those are the severely ill who can't even get on a computer or phone.
So did your symptoms start off severe would you say and got better? And so you never had a virus or got sick just went straight to cfs? I'm trying to find someone who is most like me with the situation. I just want to know how things progressed for you, please don't tell me you are severly I'll?For me it went off after playing football with my friends. I started feeling extremely lethargic and spacey, but being competitive I continued as hard as I could. After training I could barely stand, and on the way home i collapsed on the street thinking I had a heart attack. In the weeks before I had had similar experiences after interval training, but after this episode started having PEM-problems generally, not just related to training. I remember the sensation of feeling something was extremely wrong when walking around, it was such a complete nightmare.
I also mainly laid around (lol), for months. It got better for me with pacing, and relapses (to similar states) are always due to periods of overexertion.
So this whole pacing thing in the very beginning does apply because I can't pace anymore than I already am. I guess I do have Pem but I never tested myself much at all since being sick just been trying to rest as much as possible but I feel horrible all the time. I'm scared since I can't find anyone really like me on here that it's because those are the severely ill who can't even get on a computer or phone.
Thank you @Old Bones so have you always been severe, what are you symtoms and it's funny you mentioned you get Pem from cognitive efforts like concentrating because all I have been doing for the past weeks is looking things up, I probably spend at least 10 hours a day looking up what ever I can about thisI can relate to not recognizing PEM in the early months/years due to feeling "horrible all the time". But also, without the internet in those days, I wasn't aware of the concept.
In more recent years, I've been able to re-evaluate that period of time considering the knowledge and experience I've gained. I'm one of those who experience PEM just as much, or more, from cognitive effort and concentration as from light physical activity. I now realize that for me, spending hours a day lying on the couch watching TV was not "pacing". Even now, I have to strictly limit screen time to avoid PEM. Although diagnosed as severe, I've never been among the very severely ill you mentioned who are unable to get on a computer or phone.
In one respect you're fortunate to have received the advice to pace. Those who do so early on seem to have a better long-term prognosis. But, the horror stories you've been exposed to, and that I wasn't, are frightening. Try not to catastrophize, and focus instead on what you can do to improve your situation -- easier said than done, I realize.