Did you have any strange 'episodes' before M.E properly took hold?

[Wishful]

I'm not sure that it qualifies as 'strange episodes', but my problems started with a type IV food sensitivity. In retrospect, I realized that I had a very slight type IV reaction to oranges since at least young adulthood, but it suddenly flared up into full flu-like symptoms. I managed to stop the type IV reaction (food poisoning did the trick), but the symptoms remained as ME.

Okay, maybe one strange bit: before this started, I started gaining weight rapidly (5 lbs in a month or so) without a change in diet or activities. I got my weight back down by reducing the amount I ate per meal, but then the type IV reaction started. Perhaps the weight gain was due to some sort of mitochondrial failure due to age (39 then), cascading into ME.

 

[belize44]

After coming down with Mono, I never really recovered but wasn't aware at the time. All that seemed different was a propensity to nap a lot. After about a year, I went into basic training for Army Reserves. I developed Pneumonia while on Bivouac and was hospitalized. I finished training and went home. After that, I started having these episodes where I felt incredibly weak, and could not get out of bed. It would last a day at the most. I saw a doctor and of course they perceived me as a perfectly healthy young woman and it was dismissed. I did not cut back on living, though, and continued this course of sporadic crashing and recovering as I had a child, returned to school, started a career in health care. About ten years after the first episode of weakness, I began to have the fibro pain but still managed to rise and go to work everyday. About ten years after that I got a series of Hepatitis shots before going into healthcare employment, and that was the beginning of the end; I had to stop working five years after that,and it has been downhill ever since.

 

[Chrisb]

ahh I see....so in our case the symptoms were so trivial in isolation that we missed them, it's only when you look back you see a pattern emerging?

With respect, Protean does not mean "trivial". It means "tending to change" or "variable".

In any event, the point the authors are making is not that the symptoms are missed by the patient but by the doctors.

 

[arewenearlythereyet]

With respect, Protean does not mean "trivial". It means "tending to change" or "variable".

In any event, the point the authors are making is not that the symptoms are missed by the patient but by the doctors.

Perhaps I have missed your point? i do know what protean means I was just trying to engage you in conversation to tease out your meaning by using different words. Sorry if this caused you offence.

 

[Marco]

I'll admit that even if I were cured of ME/CFS I still wouldn't be 'normal'.

Looking back I'm sure I've been at least borderline ASD/Aspergers with lifelong high levels of anxiety especially social anxiety and occasional bad reactions to stress. I also recall never being able to keep my arms up at shoulder level or higher for any length of time.

Despite all this apart from an episode aged 3-4 where I had what sounded like a pseudo obstruction (unable to defecate often linked to mitochondrial disease) I was basically very healthy.

I was also pre-onset pretty much addicted to exercise but had hit a plateau where I just didn't seem to gain any more endurance. I also had a tendency to gain weight despite eating less than others unless I constantly dieted and exercised.

Onset was subtle - increased anxiety, urinary frequency, bowel upsets and then I collapsed during Ju-Jitsu training. Funny thing is that after 'onset' I couldn't exercise, ate what I wanted and didn't gain any weight. After 12 years this changed overnight when all my symptoms worsened and I gained around 10lbs in weight with no difference at all in eating habits.

Although I fully meet the Canadian criteria I fully expect that there are many different processes at work that may end up with similar symptoms.

BTW onset followed a foreign holiday where there was possible exposure to an enterovirus but I've never felt that my onset was virus related.

 

[Forbin]

About four months prior to onset, I had a bout of abdominal pain severe enough to send me to the doctor. Usually, I wouldn't see a doctor for something like this, but the character of the pain was odd and it had persisted for quite a while. I also developed other IBS symptoms, but this all went away inside of a month.

About three months later, I had some kind of major upper respiratory infection. It included a really bad sore throat that made swallowing feel like I was drinking acid. I wonder now if it was strep throat. Figuring it was just the flu, I didn't see a doctor about it.

A week after the start of that, I was well enough to return to a normal schedule. I did notice, however, that I was feeling a little tired. I just assumed it was the after-effects of the flu.

After about another week, I noticed occasional moments when my vision seemed distorted, as though looking through a curved glass (kind of like a "fish-eye" lens effect). These moments were so fleeting, I wondered if it was my imagination.

At times, I also found myself leaning on things and going into a sort "daydream" mode - a sort of odd, "waking sleep" that one might experience when over-tired. I noticed that, during those times, one of my eyes tended to drift out of lock with the other, no longer pointed in the same direction, producing a kind of double-vision (with 2/3 of the visual field coming from the unaffected/dominant eye). Though totally mentally aware of this, I still had to kind of shake myself "awake" to get out of this mode. Again, I thought I was just run down.

A few days later, I got hit with a flu-like dizziness that would not go away. It was impossible to ignore, so that's what I considered the "onset" of my illness. I saw my doctor and had a blood test that showed that my lymphocytes were still elevated - about 20 days after I came down with the "flu." He assumed it was just a protracted recovery from that flu.

Other than the constant dizziness, I didn't feel too bad for another week or so. That's when I started to get muscular weakness and a host of other symptoms. Things then just got progressively worse over the next few months.

 

[HowToEscape?]

Looking back, there were signs for 20 years. I probably had several episodes of an earlier stage of mecfs.
If only it had been diagnosed then, I could most likely have avoided the later stages.

 

[JollyRoger]

In my case:

I had inflamed joints and diarrhoea; it was impossible to take on clothes or to go upstairs (lasted for a half year).
Than I was healthy for a few years.
Afterward I got a heart inflammation (no virus found in heart biopsy) for 2 years... a really horrible time.
Then healthy again for 2 years.
Now cfs after a long time with a sore throat (I thought it was acid reflux) and the big crash after a vaccination.

In my good times I used to lift weights 5x week + basketball+jogging (in my best times up to 100km/week)+soccer = sports addicted

 

[JayneM]

I started having feelings like I was losing homeostasis and instead of getting an endorphin kick after exercise, I'd feel like I was coming down with the flu and was really drained - like I was a toy that had the batteries pulled out of it.

Also started getting costochondritis and lots of random heart palpitations. Went to do my usual run once and only made it around the corner from my house before I had to turn back because I felt like I was having a heart attack. IBS started getting worse also. Some days I was fine, others I wasn't and couldn't pinpoint why.

Noticed I only had enough stamina to work but not go out socialising at night and then right before it got really bad, I felt a weird sensation in my brain like a switch had been flipped, and then I descended into full blown ME for 4 years.

So many warning signs and yet nobody picked up on what was happening to me. I shake my head reading some of these stories because it seems so glaringly obvious that we were all having health issues.

 

[Misfit Toy]

I had a series of events that happened. The first being that I stopped my allergy shots that had always helped me. I felt my best and I was a senior in high school and just stopped them. BAD IDEA.

Then, I kissed my boyfriend while he had a huge fever blister or cold sore on his lip. It was xmas of 1987 and I was leaving to go on a ski trip with my friends in Vermont. I kissed him and a few days later I had cold sores all throughout my mouth and I developed a massive cold. I spent the better part of my trip in bed delirious. After that kiss...I started feeling depressed and tired.

Then...the same boyfriend and I started having sex so I went on the pill. I developed yeast infection after yeast infection.

Then, I had an allergy to sulfa due to a UTI. When I say allergy, I was covered in hives in and out of my body. I was deathly ill. I was so wiped out after this and then to add fuel to the fire.....

My dad died and then a week later I went off to college. I had no time to grieve. I jumped right into college, being away from home and teenagers that wanted to hear nothing of my dad dying. It was awful. I cried into my pillow at night and started sleeping around the clock. The biggest thing...I had fever blisters all the time in my mouth.

Boom...I became super sick within months. It was no coincidence.

 

[Dechi]

@AdamS I had the almost same chain of events as you did before my health deteriorated and I realized I was ill.

 

[AdamS]

@AdamS I had the almost same chain of events as you did before my health deteriorated and I realized I was ill.

Did you have any remissions following this? Or was this deterioration following a remission/s? Thanks

 

[Ysabelle-S]

I had no health problems before falling ill from a virus. I was diagnosed with Post Viral Syndrome not long after since I wasn't recovering. Went into remission after about three months, fell ill again months later, went into remission for about 8 to 9 months, fell ill again, and have been ill ever since. The symptoms were always the same. There was nothing else before the virus struck, and nothing else going on during the period I fell ill, or afterwards.

 

[taniaaust1]

Yes I had some weird things.. many years before ME.

1 Immune weirdnesses
a/ Never got colds/flu and was an abnomally -healthy child. (I suspect I had one side of my immune system over domininant???..

b/ strangely I never got chicken pox even when exposed on occassions. to this day ive never had chicken pox.

c/ When I got EBV as a teen, I was dreadfully abnormally sick with it. I suspect from that too I had one side of my immune system more dominant .. in the same kind of balance as we hear of ME patients having though I didnt get ME till 10 years later.

d// Hep B vaccine wouldnt take no matter how many times I had it, my body wouldnt produce the antibodies.

(note .. my eldest daughter has a history of being strange in her immune system too..got a 1:50,000 rare complication to a common thing which doesnt normally cause any complications or sickness.. her body couldnt fight it and keep in check, so I really worry and suspect that she one day may develop ME! that's just real strange).

2/ Strange incident when I was 10 years. I was a very fit child into lots of sports but on this day I very strangely when out with my grandmother shopping. suddenly had trouble walking .. .as if my muscles had lost all their energy. I wasnt sick in any other way and it came on suddenly. (I think I recovered after a few hours).

3/ Another strange incident.. same as first incident but this time I was in high school.. about when I was 13 or 14 years old. This time it happened on school hike. I was one of the fittest students, still playing lots of sports (I did gymnastics, ponyclub, and swimming training twice a day and played netball.. I was super fit) but suddenly couldnt do this school hike I'd been enjoying. I think I was the only child in 4 classes of children who couldnt complete the hike. Very weird.

My muscles just suddenly died and I could hardly move my legs as it was taking so much extreme effort to raise my legs. I faked a limp to request to be picked up as I didnt know how to explain to my teachers that I was struggling to move my legs, was scared I wouldnt be believed. As before I was completely healthy that day with no other issues going on. No symptoms of flu or a virus. (Same again I quickly recovered a couple of hours later with just some rest and was then back to normal).

There MUST be something wrong with the energy or mitochondrial system, I wish they'd study all this more in ME.

These 2 incidences in my childhood .. I think from what Ive read on mitochondrial issues and history of people who develop mito issues, this is the kind of history which can be found in those with those disorders often they'll have a few strange incidences in childhood. I have some family history which also points to possible mitochondrial disease.. including a father who had to wear a hearing aid as a boy but his hearing got better.

So i believe some issue with in my immune system (immune system balance) and some mito disorder (which I still dont have diagnosed) is what made me susceptable for developing ME/CFS

 

[taniaaust1]

• On a skiing lesson all of a sudden I get that feeling that someone has sucked 90% of my energy from my body in the space of 2-3 minutes. I can no longer ski and have to get a chair lift back down the mountain. I recover and am able to go on a night out. I can also ski for the next 5 days.

I thought at the time that these strange episodes were something to do with my bodyfat %. It was under 10% so I figured that when I felt that way, it was because I had no glucose left for energy and was falling back to what little fat I had, leaving me exhausted until I got something sugary.

My question is...did anyone else experience weird episodes like these and recover before getting properly ill?

Thanks, Adam

Adam your strange episode are so much like mine except if Im remembering correctly it was like all energy went suddenly out of the muscles I was using (or maybe it was my whole body and I can just mostly remember the legs as others were expecting me to keep walking) . I'd rest (probably have something to eat) and be complelely fine again....years and years till I'd have another sudden episode.

Maybe we are a mitochondrial subgroup??? I notice several who have responded put their strange episodes down to mito issue.

 

[jaybird1]

Nearly 10 years ago I woke up with an unbelievably painful stabbing sensation in my head; my wife found me rolling around the floor in agony. Initially thought to be a brain hemorrhage by the GP I was sent to A&E as I was struggling to stand, see or talk properly. Had CT scan and lumber puncture, all ok. They gave me a massive dose of migraine medication (never had migraines before, and they said it was the most medication they've ever given someone) and after 15 hours the pain was bearable enough and I was able to go home. It took me a few months to recover - I was bedridden for weeks, diagnosed with PVFS, eventually returning to work after 3 months. The knock on effect was that I couldn't cognitively work to the same standard (I was an assistant Structural Engineer, just starting out) and I found the pages of calculations incomprehensible. I gave that job up to do something simpler!
Fast forward a few years and a year before my ME diagnosis I had a bad case of summer cold and hayfever; woke up unable to control my breathing. Spent 2 days in hospital on a nebulizer but took 3 months to get back to work. I was exhausted from it, and a couple months later contracted Glandular Fever, and 6 months later had dx of ME. Ever since then I get the exact same experience as you - my wife says I 'zone out' and she can see I've gone pale and just not responding very well.

 

[tinacarroll27]

Diagnosed with IBS 6 years before the ME and then developed joint and muscle pain. About the same time I started to notice my hair thinning, About 4 years before the ME I developed really bad seborrheic dermatitis and started to get a lot of allergies (urticaria ). Then the IBS got worse and I developed Interstitial cystitis. About 2 years before the ME I started to have a lot of trouble regulating my body temperature (Hot flushes and not menopause as I was too young). A couple of weeks before the ME I started to get dizzy spells and panic attacks. Then woke up one day with a high fever and some kind of infection and that was the started of the ME. My ME was sudden onset with an infection but when I look back I was having a lot of issues for years before.

 

[PhoenixDown]

My ME is slightly different to everyone else's, I have injuries instead of PEM. Between 2001 and 2006 I had unexplained injuries that healed with time, then in March 2007 I injured myself and never healed. My body has deteriorated ever since then with each exertion lowering the threshold for further injury. I'm now very severe and bed bound. I have to type this on my phone because I can't type on my laptop with out getting worse.

 

[Aurator]

My ME is slightly different to everyone else's.

Everyone's ME is slightly different to everyone else's.

I had some severe injuries prior to getting ME, but don't assume any causal connection between the two.

I also experienced a sustained episode (lasting about a week) of extreme and unexplained fatigue and malaise that started during a cycle race I participated in about six months before I got the URT infection that coincided with the beginning of my present illness. What the connection is, if any, between these two I have no idea, but it's odd how the symptoms that occurred during the bike race were quite unlike anything I had experienced before and very like the symptoms I have had since getting ME.

 

[Frustrated]

I had one strange episode but other than that I was completely healthy and normal beforehand. About 4 months before my viral onset I had a weird episode lasting over a week where I felt suddenly very fatigued and unwell for no obvious reason and pretty much didn't leave my bed for the whole time.