Are there symptoms you had in the early stages of ME that you no longer get?

Ditto. It was a real problem since my job was 85% phone calls.

I still get a sore throat and swollen glands with PEM flare ups though.

In the early stages, when feeling extra poorly (with PEM on PEM, or what I call “rolling PEM”), I used to get a nagging dry cough that lasted for weeks. It was extra aggravating when the coughing fits led to vomiting. Now it only happens occasionally with more severe crashes.

 

I didn't even know there was a lymph node directly under the chin until I got M.E.! Discovering it was quite a surprise. Mine hasn't blown up for a while, although the ones on the side of my neck and in my armpits often do.

I used to get this really bizarre sensation a lot of the time, always when sitting upright. I'm not sure I can even adequately explain it, but it was like my body was sinking into itself, and I was becoming simultaneously very heavy and very compressed into a small space. It wasn't painful, and it didn't stop me from being able to move around, it was purely some kind of sensory hallucination. The closest thing I've been able to find to it in medical literature seems to be the fabulously-named Alice in Wonderland Syndrome, which is associated with EBV and migraine. I'm now about 5 years into M.E., and it was a moderately common feature for at least the first 2 years. I don't know when it stopped. The wikipedia page for it also mentions loss of limb control, which might be of interest to those of you with "missing limbs".

 

Wow, thank you for pointing this out @feeb ! Ever since I got EBV (over 20 years ago now), I've experienced the sensation of either my body or my head expanding in size. It always seems to happen at night as I'm trying to go to sleep. For example, my head will feel like it is growing rapidly in size like a balloon until it reaches the ceiling. The result is that I get the sensation that I'd be able to look down from the ceiling at my comparatively tiny body if only I turned on the light.

It's nice to know there's a name for this very odd symptom:

 

@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 overdoing it way too much I get retching and being sick a little (usually don't have much in my stomach due not being able to eat at this point) and diarrhoea. I am very weak with it. I dread getting this because of the weakness, it is just awful.

I hope you have improved since? I find sipping on some lemonade helpful in getting my strength back quicker.

 

Good to know you've lived to tell the rigors tale, that provides me some comfort. I have recovered from that episode, but it took a few days - it certainly was a lot of 'exertion' in a short period.

I suspect that mine may have been triggered by the crumble in a piece of apple crumble pie, or maybe the crust, although I only ate a few bites of the crumble or crust because I know sometimes I'm a delicate flower, but I did hoover all the apples. I've been heavy keto the last few days out of fear of a repeat.

 

For 6 months i occasionally got a sudden pressure-feeling in my head, that has not happened since. I also woke up a lot after falling asleep and it felt like my veins were pulsating, i dont know how else to describe it other than that all symptoms have been remarkably consistent, and correlate with what functioning level im on at any given time. the worse it is, the more symptoms i get. in bad periods the stomach gets involved, and i also get anxiety like episodes. The orthostatic intolerance also gets way worse to the point where I struggle to walk distances. My neck tenses up bizarrely, and I have to concentrate real hard to continue walking

 

Extreme knock out exhaustion,in the earlier years,in some ways I miss it as I now just feel more demented and wired but that’s partially due to the antidepressant stimulating what’s left to stimulate