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

AdamS

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I was piecing together my story with a Neurologist the other day and a few things occurred to me...

In the 2 years leading up to my big M.E crash (the one that left me unable to work), I had a number of strange episodes but was able to recover from them. In fact, I was working full time, lifting weights 4-5 times a week and going on nights out etc after these episodes...they all started after a stomach bug followed by a Staph infection w/ reactive cellulitis.

These are a few examples of the strange episodes i'm talking about:
  • I'd be walking through town and all of a sudden (literally within 30 seconds) it felt like all energy had been drained from every cell in my body, i'd go short of breath and lose all concentration. I sat down ate some food and made a full recovery after 30 mins. Woke up fine and could work the next day.
  • I'd be at work in the office and had to have a late lunch, all of a sudden i'd rapidly lose concentration and feel like I was in a dream. I knew it was related to energy, once I got some food I recovered. To combat this crash thereafter, I made sure I ate a snack at 11am every day.
  • At the gym, after a heavy weight lifting session I became unusually shaky, very short of breath and 'spaced out' - Took about 30-40 mins to recover, woke up next day fine and able to work.
  • 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
 
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Yes.

I had an infection and thought I was over it. I was working full time and life was full steam ahead.

Over the next few months I started to notice odd things like you described happening but I was busy and so just shrugged them off. I tried to ease up more and more but what I really should have done was STOP.

Looking back I realize that these things just happened more frequently until I got to the point where I simply couldn't physically carry on.
 

AdamS

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Interesting. It seems like maybe I never did fully recover from that stomach bug/infection then and eventually by trying to carry on with normal life, the episodes started to become more frequent until they took me down for good. Makes me think that the immune system is definitely involved somehow or an underlying low level virus. Maybe that's why people have had success with Valcyte etc.
 

dangermouse

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Yes. I'd had food poisoning and a bad infection (2 years later) with Cryptosporidium. I never felt right afterwards. I had sudden energy dips which left me spaced out and unable to string a sentence together.

I'd be walking with my mum and after around ten minutes I'd feel light headed, incredibly thirsty, like I was in a goldfish bowl. I'd be sweating profusely.

I never regained my former vibrant health, I just kept on going, pushing myself onwards.

After a day's work I'd often have to go straight to bed, intending to have an hour and then eat, but I'd then be there till morning and my next shift.

I should have stopped. But as most people do, I thought I'd just work through it.
 

Webdog

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Fluctuating brain fog, fatigue, memory and vision issues for 9 years before a severe viral infection when everything coalesced into full blown ME/CFS at age 15.

Dr. David S. Bell very well describes my experience:
Dr. David S. Bell said:
However during adolescence the symptom pattern coalesces into that of ME/CFS, so that it becomes possible to say that ‘in retrospect’ the illness began in early childhood. The cognitive symptoms from age 3 to age 12 are indistinguishable from attention deficit disorder, and this is another area that has never been adequately studied.

http://www.prohealth.com/library/showarticle.cfm?libid=28892
 

Johnskip

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I was piecing together my story with a Neurologist the other day and a few things occurred to me...

In the 2 years leading up to my big M.E crash (the one that left me unable to work), I had a number of strange episodes but was able to recover from them. In fact, I was working full time, lifting weights 4-5 times a week and going on nights out etc after these episodes...they all started after a stomach bug followed by a Staph infection w/ reactive cellulitis.

These are a few examples of the strange episodes i'm talking about:
  • I'd be walking through town and all of a sudden (literally within 30 seconds) it felt like all energy had been drained from every cell in my body, i'd go short of breath and lose all concentration. I sat down ate some food and made a full recovery after 30 mins. Woke up fine and could work the next day.
  • I'd be at work in the office and had to have a late lunch, all of a sudden i'd rapidly lose concentration and feel like I was in a dream. I knew it was related to energy, once I got some food I recovered. To combat this crash thereafter, I made sure I ate a snack at 11am every day.
  • At the gym, after a heavy weight lifting session I became unusually shaky, very short of breath and 'spaced out' - Took about 30-40 mins to recover, woke up next day fine and able to work.
  • 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
Definitely very similar Adam after working out
 

Johnskip

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@arewenearlythereyet Same as me, joint pain started creeping up, sleep started getting worse, then I started struggling to follow conversations as easily, but it wasn't enough to get in the way of anything until later on. Adrenalin could definitely have played a part.
I always said in adrenaline overdrive caused this it didn't happen overnight for me it has been happening for years creeping up on me I always said to myself I'm in tremendous shape aren't you suppose to feel better and once I got to a stage only being in the gym until this day if I get my Adrenalin pumping it might take a while but I feel good when I'm done different story pem to the max I believe I have been living in pem for a long long time
 

ash0787

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possibly but not as clear cut as what you describe, I had perfect health 1 year prior to the CFS sudden onset,
however 3 or 4 monthes before I had a problem where I suddenly developed panic attacks / general anxiety disorder, for psychological reasons not physiological, however this seems to have a knock on effect on my physical health,
particularly had trouble with temperature control all of a sudden, was drinking a lot of water etc which made me think I might have been developing diabetes or something, which I even checked with a finger stabber thing. But I mostly recovered from those problems after about a month, then got CFS suddenly after a very stressful event.

I don't believe I would have ever got CFS if I didn't have the anxiety disorder. I've had a lot of other bad stuff happen to me before which didn't trigger CFS.
 

Johnskip

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possibly but not as clear cut as what you describe, I had perfect health 1 year prior to the CFS sudden onset,
however 3 or 4 monthes before I had a problem where I suddenly developed panic attacks / general anxiety disorder, for psychological reasons not physiological, however this seems to have a knock on effect on my physical health,
particularly had trouble with temperature control all of a sudden, was drinking a lot of water etc which made me think I might have been developing diabetes or something, which I even checked with a finger stabber thing. But I mostly recovered from those problems after about a month, then got CFS suddenly after a very stressful event.

I don't believe I would have ever got CFS if I didn't have the anxiety disorder. I've had a lot of other bad stuff happen to me before which didn't trigger CFS.
I believe my anxiety disorder caused this
 
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"The symptoms were so Protean that had only one or two patients attended surgery, the nature of the illness might have been overlooked."

The article describes the great variety of obscure symptoms, possible link to Coxsackie B, and dismisses the psychogenic explanation.
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?

So edited my original response
 

edawg81

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

YES YES YES YES YES.

- Always had ADHD and feeling of low blood sugar crashing (better after eating), all tests normal
- 3-4 months of PVFS every or other year and every time I get a cold. Had this since mono, 10 years before onset (probably me/cfs), foggy, heart racing feeling.
- chronic migraines increasing in frequency over time, worst year before onset.
- decreased ability to workout (struggling with regular exercises but able to push through), most noticeable year before onset.
- periods of high physical anxiety, bad reaction to migraine meds and anxiety meds

Ever since I got sick last year my pre-onset symptoms are a walk in the park compared to my symptoms now. Before I wasn't well by any means but I could work out and hold down a full time job, even be social and travel. Now nada.

Good thread!