1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.

What is the course of your ME/CFS?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by JaimeS, Nov 13, 2017.

?

What is your ME/CFS course like? (Please answer only if you've been sick for 6-mo or more.)

  1. Relapsing-remitting (periods of better wellness and periods of worse wellness)

    24 vote(s)
    29.6%
  2. Secondary-progressive (relapsing-remitting, but general course of worsening)

    37 vote(s)
    45.7%
  3. Primary-progressive (gradually worsening with no relapsing-remitting pattern)

    14 vote(s)
    17.3%
  4. Progressive relapsing (occasional sharp drops in wellness that are permanent; no remitting phase)

    6 vote(s)
    7.4%
  1. Justy

    Justy Senior Member (Voting Rights)

    Messages:
    116
    Likes Received:
    939
    Its always interested me how many of us fit the MS subtypes, and have wondered if this is the only extent of our subtyping, with most people actually having the same illness (as opposed to the multi illness theory).
     
  2. Jenny TipsforME

    Jenny TipsforME Senior Member (Voting Rights)

    Messages:
    102
    Likes Received:
    495
    I answered relapsing remitting, though for me a bit confused with having undiagnosed POTS for years and potentially another condition as well.

    It hasn’t been a linear progression or improvement and neither worst (bedbound) or best (able to work full time hours) phases were at the beginning or now. This winter marks 20 years since my ME was triggered by glandular fever.

    After my 2012 bedbound relapse I haven’t bounced back the same as previously.
     
    zzz, Rosie, MeSci and 5 others like this.
  3. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    133
    Likes Received:
    907
    Did you develop OI issues? I didn't have OI issues or PEM during those earlier years, but in the last 16 years this is what is keeping me 'disabled'. So I guess I should change/add that I did develop another health issue- OI.
     
    MeSci, Jan, MEMarge and 1 other person like this.
  4. JaimeS

    JaimeS Established Member (Voting Rights)

    Messages:
    90
    Likes Received:
    608
    Location:
    Stanford, CA
    I appreciate that. This is for curiosity's sake, not for a study.
     
    zzz, BeautifulDay, MeSci and 4 others like this.
  5. JaimeS

    JaimeS Established Member (Voting Rights)

    Messages:
    90
    Likes Received:
    608
    Location:
    Stanford, CA
    Might have been better to ask only people who've been sick more than 2 or 3 years.

    Note that it says "better wellness" in the description. That does not mean well.

    I had one person on TOF reply that they did not have a relapsing pattern nor were they getting worse. Their health state was always very similar, day to day, week to week, and month to month. Saying that in the comments is enough, thank you. :)

    Relapsing-remitting, then.
     
    BeautifulDay, Joh and Trish like this.
  6. JaimeS

    JaimeS Established Member (Voting Rights)

    Messages:
    90
    Likes Received:
    608
    Location:
    Stanford, CA
    Considering you have times you feel better and times you feel worse, I'd choose #1. If you feel your overall course has been that you're getting worse over time, I'd chose option #2.
     
  7. JaimeS

    JaimeS Established Member (Voting Rights)

    Messages:
    90
    Likes Received:
    608
    Location:
    Stanford, CA
    Thanks, Kafka, I'll add them by hand. :)

    (For good reason) you can't change a poll once people have answered it.
     
    Justy likes this.
  8. JaimeS

    JaimeS Established Member (Voting Rights)

    Messages:
    90
    Likes Received:
    608
    Location:
    Stanford, CA
    To those who have discussed shifts in their condition, people with MS slide from one of these to the other as well. I'm also sure that many feel as though the category into which their doctor has placed them fits in many ways but doesn't fit in some, or at some times. We're invariably more complicated than the boxes created to sort us.
     
  9. fds

    fds Established Member (Voting Rights)

    Messages:
    45
    Likes Received:
    390
    Ok. After reading @JaimeS posts I understand that relapsing remitting in this case means varying rather than periods of wellness or remission s I have chosen option 2
     
    Rosie and JaimeS like this.
  10. markiemark

    markiemark Senior Member (Voting Rights)

    Messages:
    136
    Likes Received:
    983
    Location:
    Scotland
    I'm definitely in the relapsing-remitting category. If I described my "best state of wellness" that I can achieve as my "ceiling", then my "ceiling" wellness is pretty poor, delicate and easy to bugger up next to a healthy person. The hole of worse wellness that my "ceiling" covers over is very deep and leads to scary places but I don't believe I've experienced my "ceiling" sliding further down into the hole every time I slowly climb back up to it. Nor have I experienced the hole being any less deep. Over the years I've got better at recognising what's my best health and my worse health. Perhaps it got better or worse in the time I wasn't as aware of it. Who knows! This is what it's been like for the last few years anyway :).

    Hopefully one day I can smash the ceiling and climb out of the hole entirely, ha ha.

    edit: a better metaphor would of probably been trapped in a deep well with a cover over it haha. Being stuck against the cover isn't ideal but it's better than being at the bottom of the well! however, the cover and the floor of the well don't change for me (i.e. relapsing/remission)
     
    Skycloud, BeautifulDay, Rosie and 4 others like this.
  11. Keela Too

    Keela Too Established Member (Voting Rights)

    Messages:
    62
    Likes Received:
    522
    Location:
    Northern Ireland
    [QUOTE="JaimeS, post: 16892, member: 135"

    Relapsing-remitting, then.[/QUOTE]

    Okay added that to the poll. Yet without treatment I would have been progressive, but maybe progressive is defined as even with treatment?
     
    Chezboo, Jan, Rosie and 3 others like this.
  12. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    165
    Likes Received:
    989
    Have answered primary progressive but have been diagnosed with a heart issue needing surgery so this may be making a significant contribution.

    EDIT: there could be a link between ME and the heart condition via RCCX theory but please don't ask me to explain that. Sharon Meglathery writes about them.
     
    Last edited: Nov 13, 2017
    Jan, Rosie, Justy and 3 others like this.
  13. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    146
    Likes Received:
    716
    Location:
    Metro Vancouver, BC
    I was thinking about this after I voted last night and I wonder, too, how much my aging is a factor in how I feel these days. Menopause for me was definitely life changing so it's hard to say how much of my fatigue today is ME related and how much is just a normal part of aging.
     
  14. Kafka

    Kafka Established Member

    Messages:
    7
    Likes Received:
    45
    I never had OI issues - but my youngest daughter does.

    The PEM, for me, was the very first symptom - the moment I realized that if I hiked a mountain ridge a second time in a day, I would be flat on my back for days... which is the moment I count as my ME/CFS start. My fitness was very high, and it took a lot even for me for the PEM to kick in, but when it did it was severe.

    I did have a bad cycling accident with TBI one year before - and never felt 'the same' but I attributed that to the TBI and some PTSD.
     
    Rosie, Trish, JaimeS and 1 other person like this.
  15. Daisybell

    Daisybell Senior Member (Voting Rights)

    Messages:
    250
    Likes Received:
    1,924
    Location:
    New Zealand
    I answered 1. I think I’m fairly stable overall, but I have days/weeks where I feel worse. I had one period of significant improvement when I went overseas on holiday - I gradually improved over 6 weeks to the point where I could walk for 40 minutes and could feel well. Then this slipped away again. I’ve not had any significant remissions to the point of being able to exercise and feel good.

    Over the ten years I’ve been ill, I gradually lost ground for the first 5 years or so - whilst fairly consistently overdoing things! I’m currently able to work a few hours a week, but I always feel worse afterwards. I pace fairly carefully. I’ve never been bed-bound thankfully.
     
    Sid, Rosie, Trish and 3 others like this.
  16. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    133
    Likes Received:
    907
    It's the normal part of aging. My older sister started menopause one year before I did and she noticed a decrease in 'energy production" when she's out running (she's very athletic). I was almost happy to hear this because I've noticed less stamina too and was afraid it was M.E related.
     
  17. JaimeS

    JaimeS Established Member (Voting Rights)

    Messages:
    90
    Likes Received:
    608
    Location:
    Stanford, CA
    I believe so. MS is treatable even if not curable.
     
    BeautifulDay likes this.
  18. Trish

    Trish Senior Member (Voting Rights)

    Messages:
    849
    Likes Received:
    6,757
    Location:
    UK
    Yet without treatment I would have been progressive, but maybe progressive is defined as even with treatment?[/QUOTE]

    @Keela Too I don't want to derail this thread by asking about your treatment, but can I ask if you've written about it anywhere, here or on your blog?
     
    JaimeS likes this.
  19. Keela Too

    Keela Too Established Member (Voting Rights)

    Messages:
    62
    Likes Received:
    522
    Location:
    Northern Ireland
    I do need to do a blog post really. I took ARVs
    I have a post somewhere on PR about it all. Okay here it is. http://forums.phoenixrising.me/inde...0-yrs-tenofovir-poll.54912/page-2#post-920200
    I'll put my story in a blog in a week or so. (Daughter getting married here in a couple of weeks)
    If anyone wants to ask more perhaps for now just PM me. xx
     
    Valentijn, JaimeS, Justy and 4 others like this.
  20. Justy

    Justy Senior Member (Voting Rights)

    Messages:
    116
    Likes Received:
    939
    There are some treatments available for some PWMS, but a lot of people dont respond to treatment or arent candidates for it. I know a very severely ill woman with MS who has not responded to any treatment and has a primary progressive course.
     
    JaimeS likes this.

Share This Page