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"Fatigue" or not fatigue - that is the question...

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Allyson, May 14, 2013.

  1. Allyson

    Allyson Senior Member

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    MY own thoughts the "fatigue" in EDS/POTS/OI/ME /cfs - for what it's worth is that it may not be fatigue.

    After much reflection ( inspired by input and discussion from excellent doctors and others - for which thanks!) I think it is a combination of

    1. desire /need to be recumbant- horizotantal rather than vertical plus

    2. after exertion:

    a) muscle aches and

    b) crash symptoms like brain fog as as the mild extreme and severe crash as the far extreme - ie the payback of effects of lack of blood to heart/bain/lungs / muscles in the vertical time.

    (and late edit - 3. exertional dyspnoea - getting out of breath easily - probably adds to the picture.)

    I noted the distinction once i started D- ribose - that totally stopped the constant muscle aches that had made it feel like fatigue - when i stay recumbant for long enough i have no symptoms (except usually - the urge to stay recumbant).

    When i go vertical for any signnificant amount of time the symptoms recur.

    I have not considered limb heaviness as i do not get that.

    And flu like symptoms Cort mentions for me come as part of the severe hangover-like symptoms af a really severe crash. (Which i can predict the onset of now - i can induce a crash simply by staying uright for, say, max 4 hours in a day..... or to be sure two days in a row....no exertion needed.)

    "Tired but wired" feeling likewise - this is just my thoughts but i think it is due to excess adrenalin in the system from the upright time (the upright time causing lack of blood suply to the brain is in the 2011 consesus criteria doc; the adrenalin release WAS explained to me by a senior medico who asserts it is released in a n attempt to cause vasoconstriciton to ensure adequte blood to upper extremeities exp brain and heart) and activity during the day bulding up in the system; the constant adrenalin release is going to imact on the muscles too - that is my guess.

    usually we secrete extra adrenalin for flight of fight which " uses it up or burns it off" and as we do neither (arguing with strangers on the internet does not count) - it is not dissipated


    Just really thinking aloud her folks so would appreciate any feedback or thoughts .......


    post script - i had another episode yesterday that reminded me of anothrer kind of crash or fatigue - this happens to me every couple of months or so .... i had done nothinng exceptional for a few days so should be stable; I did get up at 8 am yesterday but was resting on couch most of the day.

    About 7pm i get strong urge to collaple/ sleep/ go to bed - but not a normal "feel tired I need a nap" feeling. More like evrything shutting down and you feel awful and feel rather like "this is what dying would feel like". I did not go up to bed as our cat who is old wanted company but I lay as flat as I could on the couch; maybe I got eventually got to sleep for a few minutes and after about 2 hours of lying there i felt OK again. WOuld not be able to do anythig in that time.

    It could not be PEM - and was nothing like it in effect or duration - as i had not done any thing to cause that.

    A similar thing to if you have been up doing stuff for a while then "crash " or run out of energy and have to lies down - but more severe, you have no option, and in this case i had not been upright or doig anythin new or stressful - on the laptop on couch most of the day and previous coule of days..

    All in all I think we need to defind our different forms of crashes and "fatigue"


    thanks

    Ally
  2. lejones1

    lejones1

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    It's funny that you posted this because I've been thinking the exact same thing the last few days. I've been getting a lot worse over the last few months (probably because I was initially diagnosed with just POTS and told to exercise a lot and of course that backfired) and have had to spend more and more time in bed. But it's not because I'm fatigued - it's just to prevent crashes!

    I've been sick for a year and when I first became ill I really did have trouble with fatigue - trouble staying awake and I was just exhausted all the time. But now I don't really, not unless I push myself and crash. I have pretty severe POTS so being upright is difficult anyway, plus it brings on crashes - muscle aches, flu-like symptoms, brain fog, all that.

    I've been in bed for about 20 hours a day for the last 10 days, with most of the remaining time spent on the couch, and this may sound strange...but I feel like have energy that I need to use up. It's not a "tired but wired" thing, it's real energy, like I need to move around and stretch my legs. And yet I know that if I do, I'll crash and be miserable for days. I like your theory about adrenalin build up, that's pretty interesting.

    I don't really have any new ideas or explanations to contribute to this except to say yes, I completely agree with what you've said!
    Allyson likes this.
  3. Allyson

    Allyson Senior Member

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    thanks for the intersting feedback Lejones


    i got to thinking about it when i saw a great specialist who was an expert in POTS /OI and had seen lots of patinets with it - he thinks it is EDS rather than ME annd all his logic made a lot of sense for me . there is more about it in this post - which has got long now due to a lot of interest - a record 18 500 plus hits ...

    but wroth readig the first ans skinning trhough for useful links and articles on it...

    http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-33#post-354262

    cheers,

    Ally..
  4. ukxmrv

    ukxmrv Senior Member

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    I think that they are two different topics so it might help to split them up.

    I'm just thinking out loud here as well so please be gentle with me....

    Maybe there is a difference between the "desire to lie down" and fatigue. The bit about lying down (and from reading your earlier posts) sounds as if it relieves you and with ME the idea was that the "fatigue" (and even Ramsay didn't like the word) it is not relieved by rest (even by lying down).

    I'll do the PEM in another post as I think that they may be different in many patients
    Allyson and Valentijn like this.
  5. ukxmrv

    ukxmrv Senior Member

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    The original "post exertional malaise" by Ramsay was that his patients had their symptoms made worse by a trivial amount of exercise. In my case I get swollen glands and increased flu symptoms (things like tonsillitis). There was no escape from this original PEM (so patients were not better doing exercise lying down or in cold conditons, we tried all of that)

    My guess is that the immune system symptoms after exercise might fit in with the research done by the Light's of an altered immune pattern after exercise.

    If EDS fits all of your symptoms then you have EDS and not ME or CFS. However, if it doesn't then there is no reason why you can't have both.

    Does EDS explain all your symptoms including the immune ones?

    I personally don't think that I helps me to pluck ideas from the internet or from a doctor and accept them as a fact unless I have actual tests that prove them. They are just theories otherwise. Like the work of the Lights, I have no idea if I have the same pattern as I have never been tested. All I can do is look at my immune system tests and guess that maybe they would be worse after exercise.

    For the last 30 years doctors have been telling me that I have X or Y or whatever and few of them have ever run tests to demonstrate that they are right. Some have been exposed as frauds or been proven wrong - even the nice ones and the supposedly safe ones.

    As an example, I don't get tired and wired but I have a POTs dx. I have low cortisol but never had adrenaline tested and it may be that for me, this doesn't work as well. I don't get the adrenaline "surges" from shocks in the same way I did before I was sick.

    Why not stick to what you know and work with that? i.e. actual tests and things that you can prove and try and build from there? As a suggestion keep typing your posts with the facts as you know them (and stop throwing in ideas from what someone once said on the internet or what a website says that provides no backing evidence)
    Valentijn likes this.
  6. Allyson

    Allyson Senior Member

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    Hi and thanks

    i am not "plucking ideas form the internet" though..... and if i were - is that not how many of us finally figured out or diagnosis in the first place after decades of pre- internet neglect by the medical proession?

    as you are likely aware there are no tests that "prove" ME or doctors wouldn not sitll be saying it is all in our heads...so is ME/cfs still just a theory too?

    if i cannot raise a topic for thought and discussion on thsi forum...please tell me what it is for

    and where you think i CAN do that?

    Many thanks

    Ally
  7. Allyson

    Allyson Senior Member

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    hi again,,

    i am afraid this last sentence is totally nonsensical to me X

    so we need actual tests you can prove?????? ...before any discussion


    then what is the point of this forum?

    agian, fif I can't raise ideas here for thought or discussion ,,, what is the forum for ....all theories started out like this

    methylation included ...that has never been proven to any ones satisffaction - I cannot walk in and ask for a test to prove that ....as one basic example ...if we had tests and proof none of us would be here.

    regards,

    Ally
  8. ukxmrv

    ukxmrv Senior Member

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    Allyson,

    My idea was to work with what you do know is a fact to start with. Build on this.

    I'm not talking about a test that will prove ME. I'm talking about any tests that will help you understand where your symptoms fit into any of these diseases or the syndromes that you are exploring.

    As an example, I joined a research project just so I could get the results one day long in the future. A cheap outlay for the bus fare.

    Every little thing I piece together over the decades adding to the foundations of my knowledge and as we gain more understanding then a test that I had in 2001 suddenly becomes relevant in 2012 as we gain more knowledge.

    We all have our own way of sorting through things.

    Just an idea on a way forward and in no way a criticism of you.
    Allyson, Valentijn and Kina like this.
  9. Tristen

    Tristen Senior Member

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    I've never considered fatigue to be one of my symptoms. Not just saying that out of an aversion to the ludicrous name CFS....I really do not experience what I would call fatigue and never have with this disease. I'm sick, not fatigued. I used to have severe OI (with pots and nmh) and consider it to be the most debilitating of all me/cfs symptoms. I spent 95% of my time lying down due to the inability to be upright longer than a few minutes. Thru that most severe period I may have looked fatigued, but it's certainly not what I was feeling. Even now when PEM knocks me down and I'm on the couch for a day, I'm not feeling fatigued....I'm sick, like I've been poisoned.

    Many aspects of my lifestyle prior to me/cfs included activities that made me very aware of what fatigue feels like, and it's just not what I get with me/cfs. I've never understood how levels and lengths of time with so called "fatigue" can be used as some measurement for diagnosis of this disease.
    Valentijn and Allyson like this.
  10. Allyson

    Allyson Senior Member

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    Hey Tristan,


    interesting thanks; sounds like you have worse OI than i do - i can stand up if i need to - but always pay for it afterwards. Yes felig llike poisonned is an good analogy - like alcohol poisoning i say - i rarely drink.

    You say used to have OI =- did you get over for it or findsomething that helped?

    cheers,

    Ally
  11. Tristen

    Tristen Senior Member

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    Hi Ally,

    I no longer have OI since spending all of 2009 on Cidofavir. I still have some of the other symptoms, but the OI, pots, and nmh are completely gone. Still have a ways to go, but so glad to be out of that abyss.
    Allyson and Sushi like this.
  12. Allyson

    Allyson Senior Member

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    thanks Tristan - that is interesting - i have never heard of that drug - could you tell me a bit more about it please?

    How do you know the OI is gone? do yo ever crash ? can you stand up woht no ill effect ? have you had BP checked properly to establish this?

    that would knock out a lot of the symptos if OI Pots NMH was cured.

    would love to know which symptoms remain if they are fixed

    cheers,
    ALly
  13. alex3619

    alex3619 Senior Member

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    I do not think most of us can deny fatigue. Using a VO2 max test we can show fatigue. What I think we can sometimes deny is chronic fatigue. Its only chronic because something keeps inducing it. We get fatigue from doing stuff, especially overdoing stuff, and we have to do a bunch of stuff just to survive. This keeps pushing the fatigue. Some of our comorbidities might also keep pushing fatigue.

    We also probably have trouble telling other issues from fatigue, as the symptom is fatigue-like. I think this is the case with "mental fatigue" from poor blood flow to the brain. Of course if we overuse the brain at such times we will get brain fatigue.

    Seven and a half weeks of bedrest in hospital, as a moderate patient, had most of my fatigue go away. This is like resting up for an event, but for weeks and weeks. However its now all back, which is not a surprise. My own experience is now saying to me the symptom is chronic fatigability, not chronic fatigue, although this was my suspicion for many years ... how else do you explain crashes from overactivity? PEM is associated with other symptoms and findings too ... its also not all about fatigue.

    Since my fatigue went away can I now reject a label of CFS? Since my fatigability did not go away, is this more evidence for a diagnosis of ME?

    The science will unravel this in time.
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  14. Allyson

    Allyson Senior Member

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    lets hope so Alex, ta

    I would like to see it hurry up a bit

    Just reading throught the 2011 consensus criteria and note this exact quote

    !"-7E817K>-! 97E+8>71! 7K4,1C7>/0/-E! E8??-E0! 0B70!

    0B-!K17/4!/E!4,0!1-+-/9/4?!E8DD/+/-40!+/1+8>70/4?!K>,,.!9,>8C-!/4!74!851/?B0!5,E/0/,4!jhm$!hhok$!

    NB/+B! /E! /40-4E/D/-.! NB-4! E074./4?! /4! ,4-! 5>7+-! E8+B! 7E! 7! ?1,+-1@! E0,1-! +B-+OZ,80! >/4-;!!
    damn they m ust hav it encoded - will go bak and re- copy and get back to you soon

    cheers

    Ally
  15. Allyson

    Allyson Senior Member

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    sorry that site does seem to be encoded

    and i am about ddone energy wise

    here is the link though i am sure you have it

    And a fairly accurate quote on what they say about fatigue ......which shows that the word is indeed controversial in terms of this disease.

    http://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf

    "using fatigue as a name.... has been the most confusing and misused criterion"

    the lack of blood suppy when upright is clearly stated there in the 2011 consensus doc and footnoted but am too tired now to type it out




    best,

    Ally
  16. soxfan

    soxfan Senior Member

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    This is an interesting subject because for me this illness is all about the fatigue. That is why I continue to wonder what I really have. I wake up tired (just had a sleep study 2 nights ago)....I get very mentally exhausted with social activities like working...shopping...and resting is totally useless. In fact it actually makes me feel much worse but I have no choice every day but to lay down due to fatigue (not the sleepy kind). I have never had to sleep during the day or ever slept more than 8 hours at night.
    I have been tested for everything under the sun including POTS and have none of the problems people have with that problem.

    My doctor now feels my problems stem from ANS dysfunction which I agree with. I am not sure what triggered this but I did not have this problem in the early part of the illness. This is something which began about 3 years ago and has continued to get worse. I can feel my body over reacting to everything including quiet conversations to lunch with a group. It feels as though I have no control over my emotions and can't keep my body in synch with itself. It gets hyper very quickly.

    The only time I actually feel normal is when I am doing something physical like walking...working in the yard....hiking...etc. I think partly because my body is in motion and I can't feel the weirdness surging through it which I think is adrenaline or high cortisol.

    I do suffer from chronic tiredness which is what I call it because I feel tired all the time...but have energy. I am working on meditation stuff now which is extremely difficult when it is hard for me to sit still...and am going to try Tai Chi this week.

    I also have the continuous pounding feeling of my heartbeat when at rest...not a fast beat but just a pounding which I am very aware of.
    So in some ways I have some of the CFS symptoms but not the ones that are common with this illness but Fatigue is the symptom that has had the worse effect on me. I know it sounds strange that I can walk and hike and do physical stuff but underneath it all is still the constant "fatigue/tiredness" which I will never understand.
    Allyson and Valentijn like this.
  17. SickOfSickness

    SickOfSickness Senior Member

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    I can feel different kinds of fatigue, or similar symptoms that could be mistaken for fatigue.

    ME/CFS patients don't all have the same ones. Obviously some patients do not have OI/POTS. I think someone can have ME but have little fatigue. It seems like a small percentage had fatigue but don't anymore and some never had it.

    Most doctors would lump them together and not care to know which ones we have, but if we could explain the differences and tell them which we have, it might help with diagnoses like someone said above.
  18. Tristen

    Tristen Senior Member

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    thanks Tristan - that is interesting - i have never heard of that drug - could you tell me a bit more about it please?

    How do you know the OI is gone? do yo ever crash ? can you stand up woht no ill effect ? have you had BP checked properly to establish this?

    that would knock out a lot of the symptos if OI Pots NMH was cured.

    would love to know which symptoms remain if they are fixed

    cheers,
    ALly

    Hi Ally,

    The drug Cidofavir is aka Vistide and there are a slew of discussions about this drug on the forum. I share about it on several threads. I'll look for some for you. You could also just search "Vistide". It's a dangerous IV drug that's used for CMV. I'm a "partial responder".

    I know my OI is gone because I no longer have the symptoms, and my BP and pulse remain stable with position changes. Yes, I stand, drive, get in long lines at the bank, you name it, no OI.

    Yes, this tx did knock out a lot of symptoms. But it's very hard to measure my progress because some symptoms are completely gone, like the OI (which I consider the worst), while others have just improved some. My brain fog and cognitive problems have improved about 50%, but the PEM still hangs on with only about a 25% improvement. And yes, I do crash. This remains my worst symptom. If I do nothing at all, I'm in good shape. But if I start overdoing things, I will crash. I still have sleep problems, but they have improved some. I sleep 6 hours a night now.

    best,

    T

    http://forums.phoenixrising.me/inde...ts-with-hhv6-or-cmv”.22710/page-2#post-351404
  19. soxfan

    soxfan Senior Member

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    I can feel different kinds of fatigue as well...it just is very rarely sleepiness. In fact I never feel sleepy at all. I can tell you if I didn't have this fatigue/tiredness then I could live a normal life. I really don't have any other symptoms that are disabling for me.
    I am hoping my sleep study shows that I have some type of sleep disorder and that is my main problem. I have decided to discontinue taking Klonopin at night since the sleep tech told me it was not a good one to take for sleep. Then my husband just went to a CE class on sleep and sleep disorders etc...and the doctor there said the same thing. Don't take benzos for sleep as they will prevent the deep stage. Maybe that is why I feel so awful in the mornings now...
    Allyson likes this.
  20. Allyson

    Allyson Senior Member

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    Hi Soxfan,

    thanks very much for the thoughtfuland insight ful reply.

    intersting that you say

    but I have no choice every day but to lay down due to fatigue (not the sleepy kind). I have never had to sleep during the day....

    as that is what i used to think ......but when i think about it at the time it happens it is more a desire to lay down tha fatigue. for example i wake up in themornign and do not want to get up - but do not really feel fatigued, I often feel qquite nergetic but stil do not want ot get up if that makes any sense.


    you mihgt try the meditation etc lyig rather thatn sittingn

    i have not been able to sit up comfortably for years now

    i finnd if i do thing s that i an lyig down then i have more - energ y - left for other things

    and when i do have to stand up i try to wear compression clothing - that helps if you staty cool as well ie if the clothinng is not too hot.

    A specialist told me it may help if you avoid being upright too after meals as all your blood is inn your digestive system there so less left for other purposes - and if we have low blood volume as Dr Cheney posit we cannot afford to waste any, as it were.... the one time i gavve blood i felt like i was dying that night.....

    Thanks again,

    Ally

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