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How often is ME progressive?

Discussion in 'General ME/CFS Discussion' started by Keela Too, Oct 11, 2014.

?

What path has ME followed for you since onset?

  1. Progressive - consistent trend downwards since onset

    11 vote(s)
    20.8%
  2. Progressive - erratic but overall downward trend since onset

    29 vote(s)
    54.7%
  3. Unsure - Ups and downs over time, no clear trajectory

    9 vote(s)
    17.0%
  4. Not progressive - condition has remained fairly consistent since onset

    0 vote(s)
    0.0%
  5. Not progressive - erratic but overall upward trend since onset.

    4 vote(s)
    7.5%
  6. Not progressive - consistent recovery trend since onset

    0 vote(s)
    0.0%
  1. Keela Too

    Keela Too Sally Burch

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    I'm wondering about this. I notice quite a number of ME sufferers can apparently push their boundaries for a big event, then suffer payback and still return to their previous level of functioning.

    This is not my experience. I find that if I push* at all even where payback is relatively mild, that I still progressively loose ground. I'm consequently cautious in what I do.

    *(actually not even "push" but simply relax my brakes for a moment)

    I'm only ill since sudden onset March 2012. I haven't worked since that date. I had some big losses over the first few months until I got good online advice. Then a few more lesser losses as I worked things out.

    Finally I reached stability around Nov 2013, and kept at a level for about 8 months until a virus rocked my boat again in June this year, so I'm now struggling with how low my new level is. I'm heart rate monitoring and using a Fitbit, and coping mentally surprisingly well - no doubt down to excellent family support.

    Yet, I wonder if there are a sub-set of us for whom this is illness is actually progressive?

    Perhaps I'm not long enough ill to see a real trend in my state? I'm aware that an up-turn for me is still very possible - especially as I'm now doing everything I possibly can to help my condition.

    However it seems as if every small mis-judgement I make is like a ratchet pulling my level ever lower and not releasing it afterwards.

    Does anyone know are there figures on this?

    I've created a poll here to get a feel for what others have experienced - although I'm aware that those who are on a recovery trajectory may not stay around on the forum, so their experience may be under represented in the answers.

    Interested in others' views on this matter too.....

    Edit to clarify the options:

    I imagined people would be either on a general
    • up trend,
    • down trend, or
    • neither up or down...

    and that within each of those they would either feel that the trajectory was either
    • consistent or
    • erratic.

    I thought those whose path was erratic may not be certain of the direction, so used the word "unsure".

    Hope that helps.
     
    Last edited: Oct 11, 2014
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  2. lansbergen

    lansbergen Senior Member

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    Mine was progressive untill I started taking the immune modulator. That was the turning point tp slowly improvement.
     
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  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have really bad days and I have days that I feel a lot better, however to call the better days good days would be an exaggeration. But I do hang out for them. The problem for a lot of patients is that the bad days can stretch into weeks and months, making them vulnerable to depression.

    The funny thing is that after a couple of better days, the opposite works, you forget about the bad days and it is a surprise when they come back.

    If I take a longer time period, say a week, well I have considerably reduced my work hours down to zero over the space of 20 years. I now no longer cook and I socialise less. I have more intensive OI for longer periods. So just by those measures I have declined.
     
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  4. justy

    justy Senior Member

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    Hi Keela, I think there do seem to be different categories - I belive they are similar to MS - although we do also have the category of recovery as well.

    The poll does not have an option for me - relapsing remitting with a long remission. I was initially ill 20 years ago, gradually improved to near normal, then long near normal remission, then 6 years ago severe relapse. Since then I had thought I was getting progressively better )relatively), only to relapse severely again beginning last September after a failed trial of Armour thyroid, followed this spring by yet another serious lung infection that has left me very debilitated again.
     
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  5. alex3619

    alex3619 Senior Member

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    None of the above. It can be progressive, improving or constant, for very long periods. This does not really fit "unsure" either. There are indeed short term ups and downs, and long term ups and downs, and strategies that can cause progressive decline, and relapses that can represent a staged decline. Its really murky in this respect.

    The warning though is patients needing feeding tubes and oxygen and constant care are in danger if there is further decline, and need every bit of help we can muster.
     
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  6. Revel

    Revel Senior Member

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    @Keela Too, I was undecided between the first two options, but chose the second "Progressive - erratic but overall downward trend since onset".

    In my case, for the first 20 years each attack would leave me debilitated for some time. However, I would eventually return to what felt like full functioning. In fact, for almost a year in my twenties I had no symptoms whatsoever. I didn't change my lifestyle at all, had no treatment, took no supplements, yet I achieved what appeared to be spontaneous remission. I continued to lead a very simple, quiet life out in the country, and it felt great!

    Unfortunately, the CFS/ME returned with a vengeance, accompanied by a hefty case of POTS.

    Since then, each episode has left its mark. In my forties, the downward trend accelerated away so fast I'm still trying to come to terms with what I now believe to be permanent disabling changes in my life.
     
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  7. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Even relatively minor complications can be serious for patients living alone. For me it was the side effects of antibiotics and trips to ER. The stress of that week stayed with me for months. Lately it has been what I suspected were gallbladder attacks with vomiting and severe pain, since then fatty liver is suspected, but these new additions completely throw out my finely balanced life. Most people would shrug off these things more easily.
     
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  8. Keela Too

    Keela Too Sally Burch

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    I think you'd fall into the "Unsure" option. ;)
     
  9. Keela Too

    Keela Too Sally Burch

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    I suspect "unsure" is still the best option for you. ;)
     
    Last edited: Oct 11, 2014
  10. Keela Too

    Keela Too Sally Burch

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    Thanks for all the responses so far. It is hard to word a poll so that no option is uncovered.

    However, I imagined people would be either on a general
    • up trend,
    • down trend, or
    • neither up or down...

    and that within each of those they would either feel that the trajectory was either
    • consistent or
    • erratic.

    I thought those whose path was erratic may not be certain of the direction, so used the word "unsure".

    Hope that clarifies. xx
     
    Last edited: Oct 11, 2014
  11. Keela Too

    Keela Too Sally Burch

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    It does seem that so far many of us feel that our illness has had an overall downward trajectory. Of course there is sample bias here, as those who remain ill, or keep getting worse will keep coming back here more often.

    No easy answers for any of us. xx
     
  12. A.B.

    A.B. Senior Member

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    I accidentally voted consistent downward trend whereas I meant erratic, but overall downward trend.
     
  13. minkeygirl

    minkeygirl But I Look So Good.

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    @lansbergen Which immune mods are you taking? I alternate between a few. Always looking for something new. PM me if you don't want to talk in an open forum.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    I chose erratic with an overall downward trend especially since June 2014. Since June, each month is significantly worse than the prior month and I am still unclear why. When I look at where I was one year ago, and I was sick then, I would now give anything to return to that level of functioning.
     
  15. Revel

    Revel Senior Member

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    @Gingergrrl, it didn't seem right to 'like' your post. I wish we had an 'empathy' button instead :(.
     
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  16. Keela Too

    Keela Too Sally Burch

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    I too would like to return to the level I was at this time last year.... it is a cruel illness when it runs like this, just taking more every time we thing we've adjusted to the previous level.... :(
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Revel thank you so much and often when I hit "Like" I mean it in a supportive empathy way b/c there is no empathy button!
     
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  18. Sushi

    Sushi Senior Member Albuquerque

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    I can't really answer the poll either as nothing really fits! I had some severe symptoms, they naturally abated, another tough period, aggressive treatment, and then had very few symptoms for a few years, then another tough period, targeted medical intervention, then slowly getting better....

    One thing that complicates it is that I have no idea what the course of the illness would have been if I hadn't had pretty aggressive medical intervention--which has made a big difference (upward, that is).

    Sushi
     
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  19. Keela Too

    Keela Too Sally Burch

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    You know this business of getting worse......?

    Rarely are we told that this CAN get worse.

    Even those who know tend to always portray an ever optimistic stance, of "very likely to recover". If you are newly ill, then it's "early days" etc. There is an inherent assumption that wherever we are now, that if we are patient, and careful, that we will improve over time ...

    Now, I know folk don't want to scare us, but surely a little reality goes a long way.

    I was told that pacing was important for getting better, but actually pacing is only a way to try to prevent worsening. It's for stabilising our condition as we wait for a little miracle....

    So what of Recovery???

    Of course it is possible, I've no doubt of it, but I don't think it comes of:
    - pacing
    - positive thinking
    - relaxation techniques
    - breathing exercises
    - taking supplements
    or indeed any of these other things touted to help us recover..... (and I'm not going near GET! ;) )

    And honestly, I think those folk who do get better don't necessarily have the best answers for helping others to get better. (In the same way that if I rolled six sixes playing dice, I would not necessarily be the best person to teach some-one else to do the same.)

    So until real research is done, and there are more answers, all we can do is employ the best preventative techniques we can, in order to slow the decline. If in doing this, we manage to recover, then we should acknowledge the part plain old chance played, and not chalk our recovery up to either our "determination" nor our amazing "recovery plan"!

    Sorry.... minor rant there.... carry on. ;)
     
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  20. Keela Too

    Keela Too Sally Burch

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    Not sure why it's difficult to say where you are. You say you are improving... so that's great even if the path way is erratic. :D
     

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