1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

How many people have been ill with CFS/ME for over 20 years?

Discussion in 'General ME/CFS Discussion' started by Misfit Toy, Apr 22, 2014.

  1. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,803
    Likes:
    901
    US
    30 years. I am only in my 30s and most of my childhood was stolen by M.E.

    Before M.E., I had serious "warning signs". All the conditions were right for me to develop M.E. when the trigger(s) happened.

    The first 18 years, I pushed myself hard. Then I went through a stressful 2 years and finally went to get diagnosed, 20 years after onset. With years of practice, I am better at not pushing myself but I cannot seem to avoid stress.
    merylg likes this.
  2. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,384
    Likes:
    1,150
    @brenda Is spooky2 RIFE? Confused. Wouldn't that be great if you could have some sort of computer Rife?
  3. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    667
    Australia, Melbourne
    Me too - yes we all deserve a prize Alex!
    I know what mine would be.... a pill that fixes it - just one pill mind....

    took me 20 years to get a diagnosis

    frequent sore throats, motion sickness, hay fever, allergies and migraines were the early signs i missed - then photophobia and hyperacousia started ....downhill from there with " fatigue" though I have never had any joint hypermobility - always stiff muscles though which began to also ache when i was about 30.....

    Ally
    merylg likes this.
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,560
    Likes:
    1,192
    Florida
    24 years for me. Acute viral onset resulting in never ending chest congestion and prescribed multiple rounds of flouroquinolones. Not sure if virus or quinolones nailed me.

    Improved dramatically from 2005-current by eliminating gluten, dairy, corn, soy, oxalates and chemicals but still have oi, general muscle fatigue and pem.

    I appreciate everyone's willingness to share info too. I'd still be declining if it weren't for fellow patients sharing their knowledge. Thanks.

    tc ... x
  5. brenda

    brenda Senior Member

    Messages:
    1,233
    Likes:
    585
    UK

    Yes its a rife device. You download the programming and hook it up, then you're away.
    Misfit Toy likes this.
  6. Sean

    Sean Senior Member

    Messages:
    1,161
    Likes:
    1,723
    Very sorry to hear that. Took me 5 years, and that was hell.
  7. beaker

    beaker CFS/ME 1986

    Messages:
    387
    Likes:
    567
    USA
    As my avatar says : 1986 was the year for me. Acute onset.
    So this year is my 28th. Over half my life mostly in bed, always in pain.
  8. PNR2008

    PNR2008 Senior Member

    Messages:
    395
    Likes:
    552
    OH USA
    I had complex migraines at 11 that continued to 52 but finally took botox and that pain has been eliminated. At 33 I had a mylogram with an oil based dye, became allergic and with surgery developed arachnoiditis (inflammation of the spine). Most people with this do not end up well.

    At 38 I had knee and joint pain, worse migraines and memory loss. I had encephalitis which came on suddenly and I never recovered, never had a remission but thankfully was diagnosed with CFS within a year. In 5 years was diagnosed with CFS/ME/FM and additional brain abnormalities by Jesse Stoff MD and Jay Goldstein MD respectively.

    I forced myself to read and learn new things, continued living alone and running things but I rested then walked whenever I could.

    Life happens. In the last 14 years my chronically ill mother and Alzheimer father needed care until their deaths, dealing with siblings in denial, the death of my niece and moving during the housing crisis have hurt my health the most.

    Still many people do not believe I'm sick even doctors.

    All I can say is" Bravo" to all of us who have suffered greatly and needlessly with this plague and may the future be brighter than the past.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,328
    Likes:
    1,657
    Midwest, USA
    28 years for me. "Killer flu" onset. I nearly recovered in the first 6 months. A slow decline followed. I wasn't diagnosed for years (I'm still not sure what my dr. thinks "CFS" is), so I did all of the wrong things.

    I have early onset macular degeneration and osteoporosis.
    maryb likes this.
  10. jstefl

    jstefl Senior Member

    Messages:
    162
    Likes:
    69
    Brookfield, Wisconsin
    I caught a cold in January 1991 and haven't been healthy since.
  11. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    32 years, with 12 years virtual remission (90% well between 1990 and 2002).
  12. jann1033

    jann1033 Senior Member

    Messages:
    134
    Likes:
    125
    Me
  13. jann1033

    jann1033 Senior Member

    Messages:
    134
    Likes:
    125
    I got bronchitis in Jan. 1988. That was the end of "normal" life for me. First 10 years were a rollercoaster of crash and burn/ claw my way out of the pit/crash and burn cycles.

    Started to realize this wasn't going away "in 5yrs "like they said( Lol, slow study I guess) so started doing my version of"pacing" and don't feel fluish every day now. Tried working a supposed to be 10 hr. A week job and couldn't do it.

    Latest is a pretty bad flare, set off by moving to a new home, not quite a relaspe, I hope I can stop it for it gets to that point cause every relapse I never get back to pre relapse, I always permanently lose some thing

    Sorry but can anyone tell me how to start a thread, I want to ask an unrelated question and can't figure out how to do ut
  14. Snowdrop

    Snowdrop Senior Member

    Messages:
    359
    Likes:
    492
    Toronto
    Hi @jann1033

    At the top of the page click the forums page. Select which forum your question is appropriate to (eg community, symptoms etc).
    After you've selected the forum and subforum there is a button (top right) in blue 'post new thread' ~ select that and pose your question.
    SD
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,958
    Likes:
    3,010
    N. California
    36 years for me. I was very athletic and fit prior to my collapse. I began skiing when I was five and skied every winter until my health fell apart when I was 20. I also used to swim a mile every day during my first two years of college. (That's 72 laps in an Olympic sized pool.) I loved swimming and skiing, and miss them so much.

    Just as I came out of being bedridden, after the initial onset of my disease in 1977, I was struck by lightning two years later, in 1979, which nearly killed me and caused some pretty severe neurological damage. I began to barely crawl out of that trauma, when, in the mid 80s, I was poisoned by my neighbor's chemical spraying. That turned me into a universal reactor for about 5 years, and added severe MCS to the ME. After the chemical poisoning, I was not able to travel anymore or to be in public (with stinky perfumed people), due to my chemical sensitivities.

    I've had remissions that have brought me back to about 50% of what would be my "normal" functioning, but never better than that. During those times, I've been able to maintain a rather steady yoga practice and go kayaking at the local reservoir. That's what I want to get back to if I can. In the mean time, I am using the energy I have to make art and music. That makes me happy, and lifts my spirit to a better place.
    helen1, Sing, Sushi and 1 other person like this.
  16. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,757
    UK
    me too
    Sing and Little Bluestem like this.
  17. CFS_for_19_years

    CFS_for_19_years Senior Member

    Messages:
    216
    Likes:
    184
    Washington State
    I joined this forum in Nov 2009 when I'd had CFS/ME for 19 years. My illness began in Dec 1990 so I'm now at 23 years with no remission ever.
  18. Tristen

    Tristen Senior Member

    Messages:
    611
    Likes:
    421
    Northern Ca. USA
    right at 20.
  19. geraldt52

    geraldt52

    Messages:
    51
    Likes:
    176
    30 years. One remission, after having been sick for 6 years, where I functioned at maybe 80%...remission lasted 3-4 years before I resumed a long and continuous decline. Tried to "recreate" the remission by going back and trying everything over again, but to no avail. My wife has been sick for 25 years, and is worse than I am.
    taniaaust1 likes this.
  20. Cheesus

    Cheesus Senior Member

    Messages:
    208
    Likes:
    247
    This thread is breaking my heart, so much suffering :(

    It is also absolutely terrifying. I have just gone one year since diagnosis and coming up to two years ill this summer. I have been avoiding clicking on this thread as I knew it would upset me, and now here I am in tears.

    Well, here's to the future and to the hope we can find in the slowly gathering pace of biomedical research. One day a diagnosis of ME will simply mean a standard course of treatment and a great prognosis. For all of our sakes, I hope that day comes soon.

See more popular forum discussions.

Share This Page