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@Justy I think so. I have experienced the excessive laughter, crying, high emotions. I don't like remembering my severe years and the anger, shock, despair, terror (of severe physical symptoms I was experiencing). The heightened nervous system made all these emotions felt much more extremely...

I haven't finished reading this but needed a break because I feel emotional reading this. He said some things I needed to hear about the microbiome and how changes in microbiome could alert the brain and cause sickness.

How does one describe PEM in the severe years? Layers and layers of PEM is only way I can describe it. I couldn't bear to experience those full-on years again.

Yes, I've experienced the different delay times as well. It all depends on what the exertion was (gardening, mental exertion, noise, etc. to name a few, is an exertion that brings on PEM quicker than other exertions for me). Then there is the 'accumulation' PEM that can happen over a period of...

Thanks for mentioning this @zzz I must read through the ICC definition again and refresh my memory. Good to see ICC has this 'Pene'. I hope they describe a weakness + exhaustion but I will check if they do. The weakness part should also be in the description.

I wonder if it is neuro-immune induced weakness that some of us are feeling as well. When my ME is severe, or I have accumulated too many "over-doings" over a period of time I experience as part of the PEM experience 'what feels like' a neuro-immune weakness. I barely can look after myself...

I saw a lady take a bad fall last year while walking with the Nordic poles. They tripped her up. So be careful with them. Anything we add to our walking like sticks, shopping trundlers, add risk of bad falls. Just a reminder to be extra careful when using these.

I get the drunk-like swaying as well. I have to concentrate while walking (although, I am so used to dealing with this now after 20 odd years of it, mostly since severe onset, 16 years ago). I use a shopping trundle a lot these days and I find leaning on it really helpful for stability. Wish I...

At the moment it is mornings and evenings for me. In my severe years it was only in the evenings where I felt a hour or two more energy (not every day though). I had a strange weakness in my legs in the severe years which really worried me because it was a very unusual feeling of weakness. To...

. I've changed my vote to 'secondary progressive' because my ME 'remitting' is really just a slight easing in symptoms due to resting.

. Thanks @JaimeS I see I missed registering the explanation within the brackets first time round.:banghead:

I don't understand what 'primary' and 'secondary' mean in regards to this illness. So I'm finding it hard to work out which describes me most.

I voted the 1st one but it could be that I am the 2nd, 3rd or 4th. My ME has been progressive through mild to severe and now I don't know what is really happening at this stage of disease. I feel a worsening in some ways. Edit: Changed my vote to 'secondary progressive'.

I agree, a really important message @alex3619 . I should never have been smoking with ME. I am paying severely for all the years of smoking now. My parents were smokers well into their seventies. I am paying decades earlier than they - I know ME has helped caused me to be susceptible lung and...