This is how I am different

[optimist]

@Mij wrote something interesting in this regards here: http://forums.phoenixrising.me/inde...ople-get-really-well.34385/page-3#post-535595

 

[optimist]

it might be very important to stop "taking advantage" of good days with enthusiastic activity, and instead to scale back to something you can handle without any symptoms resulting at all.

If you do come down with a nasty virus at any point, strap yourself into bed for as long as you can bear it, and don't be in a rush to get back to work/school/exercise. Sufficient rest might make the difference between staying in the mild/intermittent category and moving into the moderate/severe category.

These are tough ones to manage, but thank you for pointing that out!

 

[Mij]

Hello friends!

I have been pretty much back and forth with myself of what I am 'having' - is it ME or is it something else. When I read many of the posts here I can relate to so many situations and symptoms, but still I seem to differ. There are days when I must sleep several times, can't think, super brain fog, wired/stressful, irritable throat and nose, flue like feeling, feeling very down. Fortunately those days have gotten more rare.

Then there are days when I can actually go to work for a few hours and take a run in the forest and feel quite good, but still quite mentally fatigued and stressed out. These days are also not very common, but they happen.

Mostly I am somewhere in between. It's like I go from very, very bad, to almost close to remission. When people ask me "How have you been lately", I often reply "Like a JoJo".

I do not get muscle pains as I see most in here do. And I am not sure about the PEM. Once in a while it seems that I have it, but mostly I do not.

Does this sound like ME to you?

You tagged me so I came to your thread. I haven't read through all of your posts but I'll comment on what you wrote in the particular post. How long have you been ill? I did not experience PEM for the inital years of illness only because I didn't do any exercise or exert myself. The PEM started after I started to feel much improved and started exercisinng. I know what PEM is, it's very distinctive. I don't have pain but the symptoms are very distressing- I have to stay in a lying down position until it subsides, it takes around 2days recover unless I do something really stupid like run 6miles.

So if you are able to do some exercise and not feel too bad after then don't be fooled because I didn't at first either, the PEM gradually got worse the more I did. I did not understand what was happening to me back then so I continued to exercise because I eventually recovered from the PEM. The damage might be permanent long term.

 

[optimist]

You tagged me so I came to your thread.

Yes, I was a bit sly

How long have you been ill?

My memory is a bit messed up, and it gets worse... but I think its getting a few months past 3.5 or 4.5 years... I can't remeber anymore actually.

The PEM started after I started to feel much improved and started exercisinng.

That's what Valentijn and Justy is warning me about. These are very important testimonies from you guys! Thank you!

 

[SickOfSickness]

Try natural antivirals, natural antibiotics, cleanses (to detox liver, intestines, and other parts), and prebiotics if you have not.

 

[MeSci]

Can't remember if anyone has said this here, but it's worth repeating anyway.

One major difficulty with identifying PEM is that it can develop between one day and maybe as long as 7 days after the activity that caused it.

When my illness has been worse, the PEM has arrived a day after overexertion.

When I have been at my best, it seems to have taken up to a week to appear, and is then so mild as to be hard to be sure whether it is PEM at all.

Currently it seems to be about 2 days. So I tend to feel fine the day after the exertion, but ill the day after that, then gradually improve over the next 2-3 days.

At least one person has reported the opposite pattern - that it comes more quickly when they are better.

 

[optimist]

Try natural antivirals, natural antibiotics, cleanses (to detox liver, intestines, and other parts), and prebiotics if you have not.

I've tried olive leaf extract so far and that made me exhausted...

maybe as long as 7 days after

If this is so, then my JoJo COULD in fact be PEM...

 

[MeSci]

If this is so, then my JoJo COULD in fact be PEM...

Not sure what you mean by 'JoJo'. Same as yo-yo?

 

[optimist]

Not sure what you mean by 'JoJo'. Same as yo-yo?

Haha, yes That was the local way of spelling. My bad :thumbdown:

 

[jann1033]

Before you jump to ME/CFS have your dr rule Out other things like lupus, chronic infection,maybe eveN RA, MS depending on your symptoms. Many chronic illnesses cause fatigue to varying degrees but many are also .treatable.
No one here can diagnose you, just guess and your health is too important .
I reread your initial post and you mention stress or stressed out a few times. Anxiety disorders can cause physical symptons, so can depression. you really need a good check up to see whats going on.

 

[Little Bluestem]

If you don't think you have what many of us here have, you don't want to get to the point where there is no doubt that you do if you can avoid it.

Thanks for the good advice!

I quite agree. Despite not knowing what my problem was and doing pretty much everything wrong, I almost recovered. If I had just known to give my body half a chance, I might have.

 

[Little Bluestem]

My memory is a bit messed up, and it gets worse... but I think its getting a few months past 3.5 or 4.5 years... I can't remeber anymore actually.

Cognitive dysfunction is also a symptom of ME, although probably of other illnesses as well.

 

[taniaaust1]

Before you jump to ME/CFS have your dr rule Out other things like lupus, chronic infection,maybe eveN RA, MS depending on your symptoms. Many chronic illnesses cause fatigue to varying degrees but many are also .treatable.
No one here can diagnose you, just guess and your health is too important .
I reread your initial post and you mention stress or stressed out a few times. Anxiety disorders can cause physical symptons, so can depression. you really need a good check up to see whats going on.

I was thinking the same when he/she mentioned being very stressed out when not being sick at all but then he/she also said

"almost all of august I had almost just good days and I took full advantage of my energy every day, with out any PEM. I thought that I was on my way out. Then, I got the flue and was set back a lot when it was over. But, I had a slight upward going trend the following weeks. Then I was hit by another flue, and now I am pretty much back to where I was a year ago... "

That I think is a good distinction from symptoms possibly coming from mental health to ME issues, clearly more then just mental health or stress issue... classical ME issue. Pity so many doctors arent so easily able to make distinctions.
...........

Optimist, it sounds like you have a very mild case of ME/CFS, do take care, if you are feeling ill at all whatever you do, dont go pushing yourself.. rest. A flu or virus could trigger it off worst but as the others said ME crash may also appear as a flu or virus too.

My ME started off like viruses. Whenever I got stressed or didnt look after my body ie too many late nights studying.. I'd get a "virus" (well that is what I thought).

It took over 8 months of getting a virus on and off before I realised there no way I could of been getting different viruses so often (doctors kept on telling me"you've caught another virus" every time I went in to them, feverish, glands up, aches and sore throat.. but they never could tell me exactly what the virus was). I'd be in bed for 5-7 days with "this virus" and then I'd be completely fine again back to my sports etc (so I didnt notice any PEM).

I got a visit with this virus more and more often and it started lasting longer and longer, instead of being in bed with virus for 7-10 days every few months, then it was 10-14 days every couple of months...

I started researching and found out I probably had CFS thou at that point of time based on reincurring virus to pressures of exams, late nights doing assignments etc, I didnt have it full time, I didnt get it to physical exercise at the time. It only went full time when it got worst.

Unfortunately by the time I worked out what was wrong with me, it was too late and I crashed so badly I was bedridden for 9mths.

 

[optimist]

Anxiety disorders can cause physical symptons, so can depression. you really need a good check up to see whats going on.

I concider myself to be of very good mental health. There are certain suplements that can hit me with anxiety attacks, but I am positive these things are symptoms, not causes.

he/she

Didn't you see the tie?

Thanks for your inputs @jann1033, @Little Bluestem & @taniaaust1! I appreciate all the feedback.

I have just been pointed to the possibility of B12 deficiency by one lovely member here on PR. I've been checking my blood test results from the last years, and lo and behold - 2011: it was 140 (when I got sick, the onset), 2012: 270, late 2013: about 340... I now understand that this is all very low, and if there is too much folate in the body, it can even conceal a severely low S-B12 level... each blood test has been done by a different doctor, and none of them has suggested this to me

But, I also understand that if this is it, it can be easily corrected - ohhh, how I wish, hope and pray for it to be the answer...

 

[Liam]

Hey,

I'm quite newly diagnosed with CFS and I am exactly the same as you. Some days I actually sleep and can do some cool things the next day and even feel like I'm on the mend. Like my body has finally got something it needs. Then I can't sleep well for days and get tremendous bouts of head pressure, fog, intermittent pains and anxiety. It's not as debilitating as what some have but certainly inhibits fluent every day life and happiness substantially.

I was recently found to have cesium and thallium poisoning as well as toxoplasmo gondii antibodies. Also some strange additional mycology and bacteria in the gut. Strangely, it's as if I'm recovering naturally judging by the results and may have been for months. I still get sick, however. Planning some chelation for the metals.

Maybe your situation is similar?

I think CFS is unique to many which makes it so hard to identify causes and recover from. Location, diet, parasite exposure, toxin exposure, genetics, mineralization, lack of electromagnetic grounding, lack of spiritual connection for many years, emf sensitivity all seem like contributors and causes. Some people have a real tough time in many areas and my heart goes out to them.

 

[MeSci]

Hey,

I'm quite newly diagnosed with CFS and I am exactly the same as you. Some days I actually sleep and can do some cool things the next day and even feel like I'm on the mend. Like my body has finally got something it needs. Then I can't sleep well for days and get tremendous bouts of head pressure, fog, intermittent pains and anxiety. It's not as debilitating as what some have but certainly inhibits fluent every day life and happiness substantially.

Those symptoms sound to me like post-exertional malaise (PEM) - a key symptom in ME. The days you feel good may be because your body has had something it needs - namely rest. The PEM would be because you overdid things due to feeling better.

There are few people on here who cannot relate to this. We do it/get it all the time, unless we pace activities meticulously. It's frustrating and tedious, but sadly necessary.

 

[optimist]

Hi @Liam! We might be a bit similar then! I haven't really had too much improvements yet, other than the period in August. But now I am almost worse than I was before I got better then... Do you have any food intolerances?

 

[Little Bluestem]

@Liam, in case MeSci wasn't sufficiently clear, PEM is NOT a good thing. You need to pace you activities on your good days so that you do not get it. If you don't, you could wind up like some of us long-termers. Search on 'pace' 'pacing' and 'anaerobic threshold' for more information.

 

[MeSci]

@Liam, in case MeSci wasn't sufficiently clear, PEM is NOT a good thing. You need to pace you activities on your good days so that you do not get it. If you don't, you could wind up like some of us long-termers. Search on 'pace' and 'anaerobic threshold' for more information.

'Pacing' might be a better search term; otherwise you will get lots of hits relating to the infamous, misleadingly-named 'PACE' trial.