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

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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.
 

Allyson

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Pick me, pick me! :woot: Do I get a prize?

Diagnosed 1989, but had been sick for some years probably since 1985. Probably started in 1968 (childhood measles encephalitis) but it was mild back then. I would describe mine as staged onset ... each serious infection would lead to a worsened state from which I never recovered, step by step. Several misdiagnoses and trying to exercise out of it didn't help either, yet this was the advice I was getting in the mid-80s.

My current diagnoses do not include fibromyalgia but I probably qualify, but do include type 2 diabetes, severe obstructive sleep apnoea, and a mystery disease that is still undiagnosed which has a marker of massively elevated ferritin. Peripheral neuropathy is also becoming a major concern. My other problems, including non-24 hour sleep disorder, I regard as ME issues and not really co-morbidities.
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
 

xchocoholic

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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
 

beaker

ME/cfs 1986
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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.
 

PNR2008

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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.
 

Little Bluestem

All Good Things Must Come to an End
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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.
 

jann1033

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It's been 25 years for me. Came down with it in 89 and I have never had remission, gotten better, etc. How many others have been ill to where they can't work, haven't had a remission, etc? Also, I would like to know how many have seriously not gotten better only to go downhill again. How many have been consistently ill for over 25 years. Curious.

As years have gone on, more and more diagnosis' including Fibro, Endo, IC, CVID, a murmur and now Sjogrens. It just keeps going on and on.
Me
 

jann1033

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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
 

Snowdrop

Rebel without a biscuit
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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
 

Dreambirdie

work in progress
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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.
 

CFS_for_19_years

Hoarder of biscuits
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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.
 

geraldt52

Senior Member
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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.
 

Cheesus

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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.