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Important Question

Discussion in 'General Symptoms' started by Lee Ann, Oct 30, 2012.

  1. Lee Ann

    Lee Ann

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    Hello Everyone,

    I would like to ask a question and get your feedback. Like many of you, I have been told many different things by different doctors. I have been told I have atypical ME/CFS but here is the confusing part. I was also told that the fatigue had to pre-date all other symptoms. In my case, the brain fatigue came last. Has anyone else had the fatigue happen after other symptoms had already occured? Thanks so much for your help.
     
  2. nanonug

    nanonug Senior Member

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    I honestly don't think it matters.

    If you don't mind, would you enumerate all of your symptoms?

    Thanks!
     
    justy likes this.
  3. Tammy

    Tammy Senior Member

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    I've never heard that the criteria for having ME/CFS depends on the order of the symptoms.......this illness is way too complicated and variable for that. It's been some years since I was diagnosed but from what I can remember mine started with dizziness.
     
    justy likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've never heard that either. For me, fatigue came after some of the other symptoms

    Sushi
     
  5. jimells

    jimells Senior Member

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    Since everyone experiences the illness a little differently, I have to wonder what 'atypical' looks like. I've never seen anything anywhere that suggests fatigue must come first. I don't remember reading that in any of the illness criterias I've looked at. As far as I know, not even the 'all-in-your-head' crowd suggests that fatigue must come first.

    According to the doctor who told you this, what is the significance of the order of the symptoms?
     
    ggingues likes this.
  6. Bob

    Bob

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    The symptoms don't have to arrive in any particular order for a diagnosis.
    You just have to have the appropriate symptoms at the time you get a diagnosis.
    Expert physicians also recognise that the various symptoms can come and go (fluctuate).
     
    GracieJ likes this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have never heard that one before.
    I was told by an immunologist that i didnt have chronic fatigue syndrome but just chronic fatigue as i wasnt bed bound. When this came out of his mouth any credibilty i had for him went out the window. Im sure others have heard similar weird things, just shows that they arent very well schooled in cfs/me.
     
    Bob, August59 and ggingues like this.
  8. AFCFS

    AFCFS Senior Member

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    I honestly think that some doctors just say something that sounds like it has merit when they do not have anything of merit to say. I think it helps to make them look important, not feel incompetent, and preserve their client base.

    I was told I had CFS and would just have to learn to deal with it . Several doctors later, CFS is held as a "catch all" of symptoms but issues of hypothyroidism, adrenal fatigue, metabolic disorder, and depression have been addressed in that context.

    I think it is great to determine an etiology to find a causative element that may be treated, but sometimes it may be simply be too elusive to track down or ultimately inconsequential to a treatment protocol. In example, if someone finds they have a tumor, it may really not matter that much how you got it, it just needs treatment for successful outcome.
     
    Little Bluestem and heapsreal like this.
  9. taniaaust1

    taniaaust1

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    Find yourself another doctor, he/she has no idea what he's talking about.

    Its well known that other symptoms may come first. IBS has been said to actually be able to predate ME/CFS coming in by a couple of years (Ive read that in a well known publication. it may of been the Canandian consensus def).

    Others may have Fibromyagia happen first and then have that worsen with more fatigue come in until they can be said to have ME/CFS. 25% of Fibro patients end up with ME/CFS.

    Some just have slow onset of symptoms over time as more and more come in and a person gets sicker. CFS can be rapid or sudden onset and symptoms can occur in any order at all.

    I didnt have any permanent fatigue set in until a year into this illness when I suddenly got extremely bad with it (bedridden long term).

    The best thing you probably can do for yourself is find yourself a ME/CFS specialist even if you need to travel to see one. (they also may do a good job at ruling other like ME/CFS illnesses things out).
     
    Bob and justy like this.
  10. Mark

    Mark Acting CEO

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    I have even read one leading doctor (I'm afraid I don't recall who) questioning whether 'fatigue' should be a required symptom of ME/CFS. Post-exertional malaise (PEM) or Post-exertional neuroimmune exhaustion (PENE) has a better claim to be a required symptom. That means: a significant worsening of symptoms 24-48 hours after physical exertion.

    The focus that many have on "fatigue" is in my opinion largely a consequence of the renaming of the disease to "chronic fatigue syndrome" in the late 1980s in the US. This is often shortened to simply "chronic fatigue", and this shorthand leads many to wrongly imagine that the illness is primarily or solely about prolonged and unexplained fatigue. That misleading understanding of the illness clearly comes from the outside: I don't think that anybody with the complex of multiple, chronic, painful and debilitating symptoms that ME represents would focus so much on the "fatigue" part in the way that the people who coined the term "CFS" did.

    Perhaps if you describe your symptom history in more detail (you may already have done so elsewhere), then members will be able to weigh in on how "atypical" your symptom pattern sounds.
     
    ggingues likes this.
  11. taniaaust1

    taniaaust1

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    I suggest you do that too.. as then people can more see and comment if you may only have something like a type of dysautonomia eg POTS or if you have more then just OI going on so more likely to be ME/CFS with possible coexisting things.

    It really could save you a ton of hassels and money to know what kind of specialists to be trying to get refered to first.

    There is no pressure to share thou.
     
  12. GracieJ

    GracieJ Senior Member

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    Just when I thought I'd heard everything. :)
     
    heapsreal likes this.
  13. Bob

    Bob

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    My local area 'expert' consultant thought that I should only have malaise/fatigue after exertion.
    He didn't want to give me a diagnosis because I said I felt ill all the time! :confused:

    Yes, when I first got ill, and before 'fatigue' had been mentioned by anyone, I only ever complained of 'malaise' and 'collapse'.
    'Fatigue' just didn't describe what I was experiencing.
    Maybe now, 'fatigue' is appropriate, but maybe that's because I've been conditioned to use the word, and relate to it!

    Is the 24-48 hours stipulated within some of the diagnostic criteria, Mark?
    I'm not sure if I've ever mentally registered that the time delay has been so specifically defined anywhere.
     
  14. triciaruth

    triciaruth

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    Not sure that someone can say that an individual has 'atypical' CFS/ME as my understanding is that EVERYONE who has CFS/ME is 'atypical' as Chronic Fatigue Syndrome is an umbrella term for some hundreds of conditions that can all, individually or in any combination indicate a sufferer has CFS (hence it being a syndrome "a group of symptoms that together are characteristic of a specific disorder, disease or the like" rather than a disease " a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity or unfavorable environmental factors")

    My experience of getting my final diagnosis (enough to be referred to a CFS/ME support group) was a whole arm-full or two of blood tests which rule out any other causes of the fatigue or other symptoms that don't come under the umbrella of CFS (I'm based in the UK).

    I have also had (and experienced) the 24-48 hour period for post-exertional malaise but can't remember where it was referenced from. I can count on it in fact. My most recent 'set back' happened on a Monday and it was a physical and emotional upheaval from the Saturday that caused it as everything else up to then had been 'as normal'.
     
  15. Nielk

    Nielk

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  16. Mark

    Mark Acting CEO

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    I don't think so Bob, I think I'm getting that from the work of the Lights and from observations by forum members on PEM. I have it in mind that it is generally about 24 hours for most, but about 48 hours for some. But not sure where I'm getting that from...sorry...that's only a very rough description and it is probably more about the measurable neuroimmune exhaustion and the relapse of symptoms - it may not be a reliable way to diagnose the subjective experience of PEM.
     
  17. Bob

    Bob

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    Oh, OK, thanks Mark. I'll look out for discussions and further info about it.
     
  18. taniaaust1

    taniaaust1

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    its irronic isnt it. One of my CFS "experts", seemed reluctant to call my case CFS, I think due to that I often feel well, that is until I go and do something. He didnt understand how someone could be as limited as I have to be not to cause a crash, yet be able to feel good.
    So he used to just call my illness "CFS like"
     
    Bob likes this.
  19. taniaaust1

    taniaaust1

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    I dont know if its cause Im a severe case or not but many of my crashes (if they dont happen immediately after doing something).. the delayed crash ones, when they occur tend to often happen for me at the 16-18hr point.. so well before the 24hrs.

    I tend to get two different crash points.. an immediate one usually due to the POTS and if the POTS had still allowed me to do enough to trigger off the ME.. then the second crash usually 16-18hrs later.
     
    Bob likes this.
  20. taniaaust1

    taniaaust1

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    It would be interesting to do a poll here to see at which point most get their "delayed" postexertional crash come in.

    I'd like to find out somehow if severity makes this delay shorter.

    edit.. Ive set up a poll now in regards to that http://forums.phoenixrising.me/index.php?threads/delayed-post-exertional-symptoms.20136/
     
    Bob likes this.

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