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@Marky I don't think your going to be able to continue with this. I've tried many times with strength training at home. There is something in our muscles that triggers PEM when we try to strengthen them. It's just not worth going through the severe PEM's and the weird scary symptoms you get...

Sounds like you are overdoing @Marky and getting accumulation PEM but always important to get your heart checked by a doctor as you have done, even though they don't know the cause. Get a second opinion if you can if you still feel uneasy about possible heart problems apart from ME. I love...

Patients who are at severe levels of ME (especially) don't want to hear discussion of deconditioning, it's an insult and very distressing to the very sick. They are in a desperate situation where slight exertion makes their symptoms even more intolerable. There is no choice but to rest...

Are the profoundly severe unable to walk to the bathroom? There was a stage during my illness where I could only just walk to the bathroom and back to bed. I understand the tube-fed who are bedridden would be profound but just want to clear up whether being able to walk to bathroom comes under...

I don't like using the word 'mild' either. My cognitive symptoms were severe and I was experiencing PEM but I was still able to work in those earlier years although as my ME progressed I was having to lie down all evening and then when I hit very severe ME everything changed. For me, my ME has...

Yes, I was the same. I couldn't bear to be touched. I thought I was going to die many times and I didn't call an ambulance because I was too ill and couldn't bear them to talk to me or touch or give me strong medication. I was even unable to think because my head/brain was so sore and felt...

Regarding sleep, I had severe insomnia getting only 4 hours sleep and a lot of nights no sleep at all. I was also not able to tolerable medication because the side effects made me feel worse. So I went through those years with no help for sleep because I couldn't bear any side effects that...

Being allowed to rest. There is not enough rest for the severe types of ME and that is why it takes years to get to moderate. It's a long slow catch up because you are a long way in minus. I'm still thinking about what else helped me.

Up to page 5 already and I have only read the first post in this thread a few hours ago. I want to post but will have to read everyone's post afterwards otherwise I am not going to be capable of saying anything. I don't know if I am in sync with what the thread is about but..my thoughts on this...

@arewenearlythereyet My brain symptoms in ME are an inability to learn and retain information. I can no longer take in a lot of information, whatever I do learn I forget quickly. Also I find I need people to remind me about something so that I can actually remember it. So I do have difficulty...

@Perrier Thanks for being a wonderful Mum. I have my wonderful Mum with me too. I didn't think I would ever come out of those severe years because it just went on and on, year after year without any seeming improvement. But after many years I started to notice some change. Hugs to you and your...

I wonder if your blood pressure is dropping too low @alex3619 you probably have checked for this though? I'm thinking of you.

This might be too long for some to read. Sorry for this. Yes, there are similarities to having a flu and overdoing and the flu worsens severely. Except that the ME PEM has many more symptoms, so many and severe. Now that my ME is more moderate I can do more before stirring up PEM symptoms...

Very hot sore throat at the beginning of my ME and POTS onset and the same at my very severe onset.

I had just turned 48 when I experienced my first missed period. This hormonal change hit me very hard. I felt weaker physically, more unwell, began experiencing hot flashes that became very severe a few years later. I began having unpleasant side effects to antibiotics. Not everyone seems to...

@ScottTriGuy I experienced severe rigors a few years ago. The deep shaking is deeply nauseating. I was also breaking out in a hot sweat all over too, going from one to the other. I had lung problems at the time. I do experience bouts of what you described above with my ME. If I have been...

NZ time Saturday 11.A.M. I will donate again in the next few days.

Welcome @Annaiom It was good to hear your experience and I'm pleased to hear you found one that suits. I'm looking forward to getting one now.

Yes, I'll say @Wonko

@ProudActivist Thanks, I'll keep that in mind when I'm trying the chairs out so that I don't get one that is not long enough to rest my feet on properly.