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For me gut symptoms are a downstream symptom as well. The worse the ME, the severer the PEM. I had a lot of awful stomach nausea in my severe/moderate-severe years of ME also but this was also a downstream in my experience. But having experienced a permanent microbiome change (not the gut area)...

I feel it around the back of the kidneys as well, a very sore uncomfortable feeling like you don't have much strength there to hold yourself up much longer. Yes, as soon as I lie down and have back support it slowly goes away.

Yes, a very significant change occurred for me also. I cannot tone up the way I used to since ME. I get PEM severe and get very sick from trying to strengthen my muscles. Another example of this is carrying heavy things - it brings on severer ME symptoms, so it is confirmation in another way. I...

I went through the experience of anorexia but didn't get to the severe skin and bone situation but I did get very thin. I was 15 years old. From my own experience something very subtle happens to the brain and very quickly too. It only took 3 months to lose the weight by eating healthy food...

I voted that I haven't experienced tinnitus that I can recall. I've only experienced a sound that is like the tone of a telephone before you ring the number. And I get this very rarely and it only lasts a few seconds. I don't think I have ever had an ear infection either. My parents are...

The subject of donating blood came up on a neighbourly site I joined for my area a few weeks ago and there were a lot of Kiwis who posted that they could not donate blood because they had lived in the UK during those years.

I keep reading GWAS as Gulf War.. so it has been confusing for me. I would love to be able to participate in this study. I am in New Zealand though. It would be great if we could have a cohort that are a mix of patients from all around the world as one cohort group. I've never been in a ME...

@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...