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Thanks for this. This has helped me to understand my immediate PEM which was most intense naturally in my severer years. I would get an immediate headache, nausea, exhaustion came with it. I don't know whether OI has the exhaustion as well as PEM. I also got immediate aching of sinuses, flu like...

I very much agree with this. I was working in my early ME, getting symptoms, feeling ill, something very wrong. I tried to carry on and 6 years later collapsed bedridden with very severe ME. It was the most terrible spiral I wouldn't wish on anyone.

This is a good example of how cognitively overwhelmed I get. There is too much to say, describe and then I have all the stages of ME in my mind as well. Which one should I describe. I've been thinking of this thread all week, how am I going to do it. This is where I have to go easy on myself and...

I agree with this. PEM is so much more discernable in the severer levels. Patients with early ME should be given symptom lists like, unusual exhaustion, needing to lie down, feeling very ill, fluish like symptoms etc. OI could be present also, so a symptom list for this.

Some quick thoughts having only glanced. For me, delayed PEM was so much more transparent when in my severer levels because I was experiencing it over and over for years. So it was clearly experienced. At my moderate level now I don't get that delayed PEM intensity anymore. I still get ME...

I've still got to post on this thread. It could take another week yet. I'll delete this post when I am able to post my experience.

I have to guard myself and recognize when things are hitting too hard. Take a break. I avoid threads that are too much. I am better at doing this these days and I also am better at recognizing when to take a break.

I don't understand all this but at my very severe onset I had one abnormal IgM. A week or so later it was normal.

I did the 24 hour urine cortisol test in my first year of very severe ME. I remember there being very specific instructions which I followed. They didn't find anything wrong. My ME symptoms were at their worst too.

I've watched videos on YouTube where passengers were not wearing a seat belt at the time of accident and it is horrendous what happens to a body. The impact can smash you through the windscreens flying out onto the road like a ragdoll. Even at my sickest I wore a seat belt. I had major...

I think you are describing the 'no choice but to lie down'?

Same here Evergreen. The OI was my first symptom as well and also tracks alongside my ME in severity with the odd worsening bouts.

If you were to stand for a minute or two in the shower would you have to spread your feet wide apart for balance and for the feeling/need to try to hold yourself up? I'm just curious if others experience that in the shower as well. I don't know if this is to do with my OI or some other symptom.

My blood pressure was low in my severer years Sasha. Maybe that was contributing as well.

Yes, I know what you mean here. I've had that too in my severer years. It's not just a problem with standing, there is sitting, even lying down you can feel a crushed weight. There is much to this illness that it can be overwhelming trying to explain all the situations and it can be hard to...

The need to lie down comes from what @Utsikt mentioned as number 3." Feeling of being under many G". The body starts to weigh very heavy and pulls down on you. I don't know what causes it.

Yes, this POTS describes me. The lightheadedness and dizziness symptom I would describe as a feeling of a head heavy of water and I have to turn my head slowly because it feels like I am all at sea. I would put exhaustion instead of fatigue. All the cells in the body felt crushed and exhausted.

I have to be very careful how I move my head. I think I accidently gave myself a tilt table test in my first year of very severe. I moved my head too far backwards and was immediately violently sick. I slept for 8 hours, woke at midnight and then slept until morning. What was interesting about...

I just had a quick flick read of a couple of posts at the beginning of this thread about 'profound ME' where the very severe cannot get out of bed to go to the toilet. They are bedbound. I had two years of ME where I would call myself very severe. I do wonder whether we should have another name...

I can only glance over this thread at the moment as I am trying not to provoke worsening symptoms. Feeling better today though. For me, I think reading and scrolling affect the muscles in the eye, causing PEM?. I remember in my severer years scrolling was just awful, so something about movement...