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My fatigue is relieved by rest...

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Esther12, Sep 13, 2011.

  1. Esther12

    Esther12 Senior Member

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    I've just got a copy of all my medical records, and some notes from psychiatric evaluations early in my illness said that I did not have CFS, because my fatigue was improved by rest. I've always been a bit confused by some criteria which insist that fatigue not be improved by rest - is this normal for people here? I've always ended up feeling a lot better after resting up fully, and then get rapidly and easily exhausted by any new activity.

    (This could be the first of a number of self-absorbed threads as I go through my notes - I kept being referred to Wessely, but never got to see him as my PCT weren't up for it.)
  2. madietodd

    madietodd Senior Member

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    I think the psychs got it backwards. Unrefreshing sleep isn't the same as fatigue unimproved by rest. It sounds like they were looking to minimize your symptoms.
  3. Esther12

    Esther12 Senior Member

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    That's certainly true... I remember them being rather snide about it at the time.

    I've never really paid much attention to the different criterias for CFS, but there are ones that mention the need for the fatigue to not be relieved by rest (this letter mentioned fukuda), and that's so different from my experiences that I thought I'd check to see if I'm an anomaly here.

    Apparently, instead of CFS, I had a "persistent fatigue state" - I'm not sure which is better.

    Reading my notes has made me more sympathetic towards a lot of my doctors - but the letters from the Chronic Fatigue Service are really irritating and dishonest - my final appointment was quite heated and mutually disdainful, but their letter says how helpful and useful I was finding their advice and leaflets! I wish all medical appointments were recorded, so we had proper records of them.
  4. madietodd

    madietodd Senior Member

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    I laugh so I won't cry.

    The criteria are unusual in that we need to have 1 from column a, 2 from column b, etc, with a total of at least X. I just barely squeak in to the new criteria for ME, and how different would I feel if I had barely NOT squeaked in?

    In the current climate, I think your fatigue pattern would just be one unusual symptom in an ocean of recognizable ones.

    Madie

    ps, my pattern is the same as yours.
  5. Esther12

    Esther12 Senior Member

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    Yeah - that's why I don't pay too much attention to the different criteria. It doesn't seem to make much difference.

    It still feels a little odd to find out that I was told I don't have CFS. I quite like the idea of not having any diagnosis - that seems more appropriate!

    Thanks maddie.
  6. Valentijn

    Valentijn Activity Level: 3

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    "Fatigue" is such a stupid word. We get tired and feel less tired after sleeping just like normal people (aside from ME-induced sleeping problems). But our muscles/brains get tired out, and don't recover nearly as quickly as they should, even after a good night's sleep, which is what the criteria is really referring to.
  7. Tristen

    Tristen Senior Member

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    After years of having a very physical and high stress lifestyle, I know what real fatigue is, and I don't have it as a symptom of this disease. Real fatigue is what happens to a healthy person following a significant amount of exertion/stress, and they will recover with rest. What happens to me now with me/cfs following exertion or stress, is a feeling of being sick, not fatigued. The best I've heard it described is, "feeling poisoned". However you want to label the symptoms, none of mine are relieved by rest. The only thing rest does is to prevent further damage. It does nothing to speed recovery from the flare of symptoms.
  8. SickOfSickness

    SickOfSickness Senior Member

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    IMO it can mean "not relieved" once we crash. (Even if we normally do okay and don't exert ourselves as much, so that rest is enough.) I've seen a healthy friend do an extra intense workout, and kind of feel "crashed", but that night's sleep (or a 1 hour nap) restores their energy. For many of us, a crash is a crash, and you cannot simply be fine after sleep, even if sleeping extra time. I only recover after about 3 days, even if the exertion was small.
  9. soxfan

    soxfan Senior Member

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    My fatigue is never relieved by a nights sleep or resting during the day. In fact when I lay down during the afternoon only because I must I always get up feeling much worse. If I could not have to lay down in the afternoon's I definately wouldn't. I never can fall asleep either during the day no matter how horrible I feel.
    I have total unrefreshing sleep and I began to lose my energy after a few hours even if I haven't done much of anything. Pacing doesn't work for me either because no matter what I do or don't do I run out of steam and can't recover. I haven't had a day in the past 4 years when I haven't felt completly and totally tired, exhausted worn out etc.....
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What does PCT mean?

    GG
  11. Esther12

    Esther12 Senior Member

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    Primary Care Trust.

    In the UK, if your doctor refers you to a specialist outside of your area, then your PCT needs to agree to pay for it.

    Quite a few letters are missing, so I'm not too sure what was going on, but in seems that my referral needed approval by the local Mental Health commissioner, and they said no. I'd previously been found to be unsuitable for CBT because my PFRS scores had showed high fatigue, but low emotional distress, cognitive difficulty and somatic symptoms - maybe this meant they didn't want to pay for CBT elsewhere? Maybe Wessely's patients are being pre-filtered in this way, so he ends up with a distorted view of CFS? Maybe my PCT just didn't want to spend any money on CFS? I wish I had more complete records of that period - it refers to a more extensive series of psychological testing I was sent for, which I remember doing and being all clear, but there's no copy of the results. Most frustrating.
  12. justy

    justy Senior Member

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    Hi Esther 12, i spent a long time pondering this question in the early part of my illness and thought that because i felt a bit better after resting it meant i didnt meet criteria.
    I now realise that what they mean is that rest doesnt make you COMPLETELY better in other words once you stop resting and start doing you very quickly become fatigued again.
    My exhaustion and some symptoms are relieved by rest -but only whilst i am resting or for short periods if i dont over do it too much. But my fatigue exhaustion and a worsening of all symptoms soon reappears once i start to get up nd about again. Therefore resting HELPS to reduce fatigue but doesnt cure me. This fits in very well with Dr Myhills research into mitochondrial disorder in M.E/CFS amd is also the basis for pacing techniques which seek to reduce symptoms by doing less and stopping before you become ill.
    BTW i meet the CCC and ICC criteria for M.E.

    I hope its not too emotionally taxing to be going through your notes -i know i would find it hard.
    Take care, Justy.
  13. Esther12

    Esther12 Senior Member

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    I see what you're saying... but I'd already been ill for 3-4 years at that point, so rest clearly wasn't a complete cure (unless I'd never taken the time to rest enough in all that time). I'm not really sure what it means - I'm not that concerned either way tbh.

    Thanks. I don't think it's been too bad - there was a line from a doctor about me 'relaxing into my role as a permanent invalid' which would have been a bit irritating were my expectations not already so low. (What a relaxing period of my life that was!). Lots of amusing bits with some doctors telling me I needed to put more effort in to GET, and others telling me I needed to avoid over-doing it, and relax more. Both sides were probably irritated by the fact I didn't follow their advice properly!

    Poor old CFS patients.
  14. Tristen

    Tristen Senior Member

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    Maybe there was a point earlier in the disease where rest helped me as well. I can't remember on that point for sure, but I do know that I didn't have PEM for those early years, so maybe. I did have severe sleep problems early on and maybe that clouded my ability to see if rest had an impact on symptoms. Currently I'm sure rest does nothing to speed recovery from symptom flares. But it has to be done to prevent further damage. I really like the preemptive rest idea because it helps my baseline condition.
  15. anna_o

    anna_o

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    I really can't speak to what the real definition in the criteria means regarding fatigue not helped by rest. I just know for me that I never feel rested after sleep. I have very little problems going to sleep or staying asleep, and almost feel narcoleptic in that I can fall sleep anytime during the day if I just recline a little. But when I wake up, it feels like I haven't slept at all or sometimes, after a mid-day nap, I feel worse. Feeling sick is the best way to describe the symptoms rather than fatigue.

    Of course, I feel more sick during a crash or in the afternoon, after any energy I have has been exerted, but even if I wake up at 7 a.m., I'm ready to go back to bed by 9 a.m. Never feeling "helped by rest" to me just means that I perpetually feel sleep deprived - like I have been pulling all-nighters and haven't slept in 24 or 36 hours, only I did actually sleep. I feel like this all the time and have to suck it up just to get myself ready, get the kids ready and get us out of the house in the morning. I am a little functional after morning coffee, but it is only temporary.

    It sounds like some people on here do feel rested after sleep, but like all the symptoms of CFS, different people have some symptoms and not others and react to different aspects of the illness differently.

    Best wishes,
    Anna
  16. Tristen

    Tristen Senior Member

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    Hi Anna, Have you done a sleep study? If so, did they test for UARS (Upper Airway Resistance Syndrome)?
  17. valentinelynx

    valentinelynx Senior Member

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    Hmm. Actually, I often feel worse, more tired, more sleepy and more ill after sleeping, than when I went to bed. This is a big part of why I stay up so late, I'm sure! If I stay in bed long enough, I do eventually feel like getting out of bed, kind of like a restlessness sets in.
  18. Bob

    Bob

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    Oh for goodness sake! I get soooo exasperated with the medical profession!!!

    I had something similar (but opposite) when I was assessed/diagnosed by my region's NHS 'expert' in the UK.

    He asked me if I felt ill, or fatigued, after exercise.

    I replied that I feel ill all the time.

    And then he paused, and asked me the same question again.

    So I said the same again.

    Then he paused longer, and I thought to myself: "if I don't agree with him here, then I'm not going to get a diagnosis."

    So, I said: "That's right, after exercise!"

    I mean, what do they train these people in? Because it's clearly not ME.

    I feel ill all the time, and my symptoms are exacerbated by exertion.

    Why is that so hard to understand for the medical profession?!?!?

    Their ignorance is dangerous, and I think what they have done for you Esther is a case of medical neglect.

    And in your case Esther, their logic is completely flawed.

    Of course rest can help us or we'd all be at the very worst stage of our illness! (I think)

    The difference between us and people without ME is that rest doesn't lead us to a 'normal' recovery from exhaustion and fatigue etc. But rest can lead to a reduction in symptoms over time in many of us. At the very least, resting allows us to avoid a post exertional reaction, and so allows the body to stabilise. (Although I understand that this is not predictable if a person's illness is very unstable, or if they are at their very worse in health.)

    If rest didn't help us, then I think that we would not ever get any better with rest, and we would all be at the lowest point that we'd ever experienced during our illness.

    It would be a one-way downwards spiral into permanent exhaustion and death.



    ETA: I've just read through some other posts, and maybe some of what I've said is a bit simplistic. It can depend on the exact nature of an individual's illness in a particular point in time; the severity of a person's symptoms; and the stage that someone is at in their illness. But in my personal experience, rest leads to an improvement (or stabilisation) over time, but not a cure. I would guess that most people would see some sort of benefit from resting, although of course some people's illness maybe either extremelly unpredictably unstable, or very steady or on a general negative trend.
  19. Bob

    Bob

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    I've just re-read my previous post, and I realised that it could have been interpreted as meaning that this isn't a useful or valid discussion to have.
    And that's not what I meant at all... I think it's a very useful discussion, so I'm very sorry if I gave that impression.
    I was purely aiming my comments at the medical profession.
    Because I get so furious with them, I got carried away on a rant, and worded my post badly.
    I'm embarrassed because it was supposed to be a 100% supportive post.
    I've rewritten the post slightly to make it clear that I was aiming my comments only at the medical profession.

    :ashamed:
  20. justy

    justy Senior Member

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    I'm with you Bob all the way. The only proviso being that for the very severely affected rest doesnt seem to help at all.
    It's hard not to get on a rant isnt it?

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