How acute is acute

[Aerose91]

Or those of you who had acute onset- what is acute to you?

I can tell you not only the minute that ME hit me but the second. I was asleep and got woken up by a horrendous panic attack (never had one before in my life) and bam, it hit me like a freight train from there. Since ten it's been a constant downhill slide.

What is considered acute for people?

 

[Allyson]

aargh - lost my whole post again as I tried ot pos t- no draft saved

 

[minkeygirl]

For me, one minute I was ok, the next I was puking from allergies I never had. Downhill from there for awhile, then rallied for a few years but without treatment I progressively got worse.

 

[Allyson]

For me, one minute I was ok, the next I was puking from allergies I never had. Downhill from there for awhile, then rallied for a few years but without treatment I progressively got worse.

yes I never connected my allergies, asthma, fainting, motion sickness and sore throats and migraines - so a collapse ( fall to the ground without losing consciousness at all) at 25 seemed like the start of ti but the insidious sympotms were there beforehand - I just had never made the link


A

 

[ukxmrv]

Acute for me was a viral illness that came on within 24 hours and was severe very quickly

 

[minkeygirl]

I totally forgot since it was so long ago but I had seen an endocrinologist who misdiagnosed me with an adrenal disease and put me on Cortef which crashed my immune system.

Soon after that I got some virus that had me hallucinating. They never figured it out but I was toast after that.

 

[Sushi]

aargh - lost my whole post again as I tried ot pos t- no draft saved

Did you look in your drafts folder?

 

[Allyson]

Yes thanks Sushi - I look there every time now - I even save drafts as go but after it disappears the folder is empty

driving me batty

A

 

[Aerose91]

So is it the virus that comes in acutely or the ME that follows. I got mine from encephalitis but to be honest I can't even remember a period between encephalitis and the ME. it's like the ME was there from the beginning as well

 

[SOC]

For me the acute onset was less than 2 hours, maybe less than 1 hour. At the time I thought it was some crazy kind of flu (in August? I was ignorant back then ). At noon I was feeling fine and planning a busy evening. By 2:00 I felt like someone filled me with lead. I remember mentally blaming my daughter's little friend who came over that afternoon. "I don't remember this child being so incredibly exhausting." By 6:00 I couldn't think straight. I remember telling people to stay well away from me because I had the flu from hell. If only.

 

[Allyson]

did those who were perfectly well before it started suddenly get tested for Lyme I wonder ? lots of aussies finding out they have that now


A

 

[SOC]

did those who were perfectly well before it started suddenly get tested for Lyme I wonder ? lots of aussies finding out they have that now


A

I was tested for Lyme, although it was at least a year, and maybe as much as 4 years, later. I was negative on both Elisa and Western Blot, iirc. Nowadays I do wonder how good the testing was, but the official word currently is no Lyme for me.

 

[Aerose91]

Is acute onset possible for CFS? From what I've read it seems like it's solely an ME thing

I was also tested for Lyme in blood and spinal fluid but both came back negative. Neither was one ofthe advanced labs tho, I would be curious to try one

 

[brenda]

I had an acute onset to my severe stage. It happened suddenly whilst l was riding a bicycle, a w ave of exhaustion came over me and next morning l was toast. I had been suffering from CFS foryears before that but this was different with extreme weakness. I have few positive Lyme tests and had been walking unprotected in woods. Lyme tests unreliable so always suspect lyme for sudden onset.

 

[catly]

My symptoms started suddenly on 2/9/2012. I was visiting my brother in another state and had a great day the day before-- it was warm and beautiful for February. When I woke up on the 9th I was fine, we went to breakfast and then afterwards I started to feel really strange. I then developed a numbness and tingling on the right side of my face, leg and arm. At first I thought I was having a stroke, but I ignored it and drove back home. Over the course of a week or so, I developed "crashing" fatigue, anxiety attacks, tendinitis and joint pain and the list goes on. I remained symptomatic but fully functional for a good year then proceeded to spiral downward the Spring of 2013 until I hit bottom this past May and have improved only slightly since then.

 

[peggy-sue]

I was in the middle of a lovely long hike/ walk around town (about 13 miles altogether, an easy stroll for me), I was just setting off across a road, On one side I was grand, by the time I reached the other side, I was wading trhough a lake of treacle. I had to consciously push each leg forward, rather than simply swing it, as I had been a second beforehand.

It was really, really weird. I kept expecting it to stop as quickly as it had started, so I carried on with my walk.

Another 3 miles, uphill. I got home, crawled into bed and stayed there for 2 days.

Thet's the longest I've been stuck in bed.

My disease has nothing to do with "deconditioning".

But my onset was very acute.
A few seconds, if that.
It just took a few seconds for what was happening to register, it was so strange.

 

[Valentijn]

I then developed a numbness and tingling on the right side of my face, leg and arm. At first I thought I was having a stroke, but I ignored it and drove back home.

I had this happen too, several years before I got really sick. First I had some sudden abdominal marks appear, then I woke up in the middle of the night with my legs having pins-and-needles. That passed after wiggling around a bit, but then the entire right side of body was somewhat numb for several weeks, until a neurologist prescribed folic acid. After 5-10 minutes of really intense vertigo, I felt all warm and fuzzy and the numbness went away.

The eventual diagnosis was a complicated hemiplegic migraine, but in retrospect it might have Bartonella, since I had the stretch marks closely followed by neurological symptoms.

 

[catly]

I had this happen too, several years before I got really sick. First I had some sudden abdominal marks appear, then I woke up in the middle of the night with my legs having pins-and-needles. That passed after wiggling around a bit, but then the entire right side of body was somewhat numb for several weeks, until a neurologist prescribed folic acid. After 5-10 minutes of really intense vertigo, I felt all warm and fuzzy and the numbness went away.

The eventual diagnosis was a complicated hemiplegic migraine, but in retrospect it might have Bartonella, since I had the stretch marks closely followed by neurological symptoms.

During those early months I once had severe tingling and pins and needles all over my scalp, then I had them one time all over my lower legs, both instances were really intense and last several hours but never happened again. I also had numbness and tingling in my fingers and toes that recurred frequently the first year but have mostly disappeared since. I had a brain MRI early on (april 2012) and the neuro ruled out stoke and MS.

It's hard not to try to connect the dots to understand what causes ones ME/CFS. Like many PWCs, I was extremely active and very healthy all my life. The only kind of real stress I was under when my CFS struck was I was going through menopause. Maybe that and my faulty genes triggered the response.

 

[Aerose91]

After the acute onset what has your guys' trend been in terms of symptom severity?
I was somewhat stable until I had an episode of overexertion, and since then my setback was permenant, yet I continue to get worse EVERY DAY. I have done nothing just rest for months now, great sleep and naps but it doesn't matter- every single day I wake up and my brain in noticeably worse- physically I'm the same. It's been several months now that I get worse daily. Is this normal? Shouldn't i at least be stable considering how much I rest and how good my diet is?

 

[meandthecat]

Sept 18 2005. after a great weekend setting up an alternative health day, the irony...the irony, down in the town, I got home, felt abit odd and went to bed............sic infit.

I tell people it was like being hit by a train