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I experienced a lot of loss of appetite in my severer years. I felt sick and poisoned and I remember describing somewhere where it felt like three different types of nausea that I would experience. Possibly on top of each other at times. I lost a stone in weight at my very severe onset and...

I personally don't like questionnaires for the reason I remember vividly how terribly sick I was to go through the torture of a questionnaire. To me PEM is a worsening of symptoms and easy to understand when very ill, if that was explained to me.

PEM feels acute in the severer years.

This will be very hit and miss diagnosing by doctors but if the doctors were to give patients information on ME and tell the patient to see how their symptoms are aligning with the information over time could be helpful in the longer run.

It's the best interpretation I have heard of my experience of ME PEM. Finally, I could see my experience in the way others were also experiencing ME. This is a hard illness to do on your own without medical understanding of what is happening to us in our bodies with ME. When you get ME you have...

. Same here Sasha. I was working fulltime when I got ME. I first noticed something had changed cognitively and I was having unusual exhaustion and feeling very unwell. I could not work it out. I ended up on the terrible spiral to very severe ME. I wish there had been well known knowledge about...

This is just my out loud thought processing of 'rationing'. The ME itself has already done a major job of rationing drastically our ability to do a normal days activities. So we start at a forced level of disability and have to ration further to hold at a level or to get over a PEM and in...

I agree with this too. I had ME already before my very severe ME flu triggered onset. I assume the bone pain I felt was from the flu because I know the person that I caught the flu from. I was visiting their place and he said he was really sick with flu and aching bones. The pain I felt in my...

I've only had one very painful experience with bone marrow and that was at my very severe onset ME which was triggered by the only flu I can remember ever having. For two days I had severe aching/drawing out pain from one of my shin bones. It felt like it was coming out of the center of the bone.

I missed everything that went around this year. Masks have done their job well for me as usual, along with sanitizing hands when out. I don't know how many times I have sat close to people with obvious beginnings of a cold or Covid and still did not catch anything. I haven't had a cold since...

Weirdly, I experienced more 'pins and needles' before I got ME than I have since ME.

I wouldn't be surprised if some women go on to get ME after endometriosis. The female reproductive system and the number of women with pain and changes. I often think there is so much to be found and no one seems interested.

Apart from the ME I often think the human body is geared to be too nervy? Or is life too busy, too much to do and we don't slow down enough and let some things go. My mother when she was alive would notice when I was walking too fast, she would say to me, 'slow down and walk in the grace of God'.

. I can't remember where there was an earthquake recently but we had 2 emergency alerts for possible tsunami warning here in NZ. One of those alerts went off at 6am. I have cash, stored water and whenever the weather is rough boil water for the flask so I can have a cup of tea if the power...

To me it sounds like we are getting 'hot'. Closer to what could be going on here.

Sorry, I don't understand this last part. You mean you don't think it is necessary to pry into our full history of illness or did you mean prying into something apart from that?

A bad cold triggered my ME onset. I did have a rare reaction to a medication for an infection 10 years beforehand that caused a permanent change in homeostasis whether this was a stepping stone along a path to ME I don't know. Nothing has helped except pacing to keep from worsening.

I can't get my head around that right now Mij.

Do you feel like your brain function is normal after a rest? I feel like mine is a permanent change that doesn't go away it just worsens when I have overdone or there is too much of other triggers. Then I have to rest but it never goes back to a normal function that I can tell. It is either...

I have the visual problems too. I couldn't watch the TV at very severe ME, still don't tolerate flashing lights and programmes on TV where they change from frame to frame so quick you haven't time to focus well on each. Scrolling on facebook is beyond me and I prefer to use my laptop than a...