Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Does anyone remember the exact second they got sick

Discussion in 'General ME/CFS Discussion' started by nikefourstar, Jan 19, 2017.

  1. nikefourstar

    nikefourstar

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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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  2. purrsian

    purrsian Senior Member

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    I was an insanely gradual onset. Had glandular fever near the end of 2003, recovered and thought I was fine but looking back, I was never quite the same after that. Late 2004 I developed postural hypotension, which doctors said was 'normal' for young women and did nothing about. Wasn't until 2006 that I started getting noticeable PEM and exhaustion, finally getting diagnosed mid that year. Can only assume it was the glandular fever (which I thought was only strep throat at the time).

    I've read of a few people on here knowing the exact moment like you. But I get the impression that there's a lot of people with sudden onset after an infection, and a lot with gradual onset over months to years. Don't know if one is more common.
     
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  3. nikefourstar

    nikefourstar

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    I'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
     
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  4. valentinelynx

    valentinelynx Senior Member

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    I 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...
     
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  5. nikefourstar

    nikefourstar

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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? @valentinelynx
     
  6. valentinelynx

    valentinelynx Senior Member

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    It's been 24 years. I got sick in 1993. I fought the symptoms for 2 years before seeing a CFS expert (Jay Goldstein, MD) who helped me with meds. I had a partial remission 1997, to about 80% of normal, perhaps. This allowed me to finish my medical training. Then, in 2009, I crashed again after moving to take a full time job, and had to quit the job. I now work occasionally. I've been going downhill for the past couple of years. This I attribute to my not getting medical care for my illness, and thus not knowing that I had become immunocompromised and developed many autoantibodies.

    I am now getting intensive treatment for tick-borne disease and immunosuppression at Open Medicine Clinic in Mountain View. Haven't turned the corner yet, though. Have high hope, however.

    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.
     
  7. purrsian

    purrsian Senior Member

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    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 Pacing

    You might find this thread interesting: http://forums.phoenixrising.me/index.php?threads/what-type-is-your-me.43990/. Please don't be alarmed by the amount of people on these forums who are 8+ years ill, there are people who get better after just a few years (but obviously don't continue to come to CFS forums!). You'll see that there is a mix of sudden and gradual onset. That post also gives you an interesting idea about the kinds of things people think trigger their illness, mostly viruses but also some other things. The very last person to reply noted that it was very sudden, so they might know the exact second like you.

    There's no obvious correlation between length of illness or severity with type of onset I don't think. I find the best way to deal with thinking about the future is to be realistic but still optimistic. I try to accept my limitations and my situation - not in a "giving up" way, but just being realistic about what I can and can't do. But at the same time, I try to still be hopeful and positive. Being too hopeful can mean that you get disappointed if a new treatment doesn't work as planned. So I aim for a nice balance between hopefulness and optimism, and acceptance and being realistic. Hard to find that balance, but I'm very happy when I'm able to find it :)
     
  8. purrsian

    purrsian Senior Member

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    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.

    And then it's also easy to try to increase your activity too quickly because you have one good day. Lots of rest and then gradual increases, very gradual!
     
  9. Jenny TipsforME

    Jenny TipsforME Senior Member

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    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.
     
  10. nikefourstar

    nikefourstar

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    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.
     
  11. purrsian

    purrsian Senior Member

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    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.

    It's what I would refer to as the crisis stage. I'm not sure if that's a proper term or just something I made up, but it was a stage where my entire system was messed up and in crisis. I don't think I did anything in particular to overcome it, I think it was just time and rest. I hope you are experiencing a long crisis stage. ME is often very up and down over it's course, so I hope that you're going to have an "up" soon. I'm really sorry you feel so horrible, it's such a terrible illness :(
     
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  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    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.
     
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  13. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I don't suggest pushing yourself to see if you get a delayed reaction! Lots of conditions cause disabling fatigue though, it is the delayed increase in symptoms that is hallmark ME.

    There do seem to be different phases of ME. I don't think this is verified by research but the idea of a crashed phase where the emphasis is rest; a moderate phase where the emphasis is pacing without stress and a recovering phase where the emphasis is getting back to normal life without triggering relapse by over doing it, seems to fit my experience.

    I had a bedridden phase which I thought was just ME but was perhaps mainly POTS with hindsight. In an effort to help we'd gone to organic, home cooked food nothing pre-made and inadvertently cut out salt (really important for managing POTS). With a few supplements, salt and electrolytes I went from bed bound to housebound in a couple of weeks. Obviously this was an individual experience but POTS is one of the conditions with very similar symptoms.

    I'm still at virtually housebound level. In recent years I've been fluctuating between moderate and severe. I did have years of being mild though.
     
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  14. ash0787

    ash0787 Senior Member

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    no, it happened while I was asleep, I just remember the cold virus type feeling for the preceding 2 days and throwing up before going to bed which anyone would just think they ate something that wasn't any good. So feeling almost normal one day and then can barely stand up for 30 seconds or get downstairs etc the next.
     
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  15. nikefourstar

    nikefourstar

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    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?
     
  16. Old Bones

    Old Bones Senior Member

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    I 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.
     
  17. nikefourstar

    nikefourstar

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    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 this
     
  18. UKmum

    UKmum

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    Try not to panic yet nikefourstar- many people have chronic fatigue for months without it becoming ME/CFS- thats why the diagnosis is only made after at least 6 months of the disabling symptoms. Have you had any other body stressors recently like a fall/crash/injury? I know of one person who was triggered from being hit on the head with a ball.
    My son was very poorly for around the first 5 months virtually bed/sofa bound but he didn't get to what I would consider severe- more like a long proper flu. He then improved and is able with pacing to do home tutoring, a little drone photography and some swimming. Its a restricted life but we try to make the most of it and keep some hope for improvements.
     
  19. nikefourstar

    nikefourstar

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    So he Never had a virus or something he just got fatigued after the onset? To me limitations sound wonderful right now I'm afraid I'm never going to leave my bed or house and never be able to have friends over. Or worse not be able to talk or communicate. See I wonder about people like me and hat guy that got hit in the head. If it wasn't a virus there might be a possibility that we can overcome it. @UKmum
     
  20. nikefourstar

    nikefourstar

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    And yes before I got sick I was under a year of what I would like to call some of the worst stress any human could have been under. I was in chronic pain in my larynx (voice box) had acid reflux coming all the way up and burning my vocal cords. Was in misery everyday. Took way to many pill the night before woke up feeling fine and than after I got out of the shower bam. Been in bed since never got a virus before though @UKmum
     

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