I'm trying to track my activity & symptoms to see if i can pace a bit better after a recent unexpected deterioration. I know it will sound daft to non sufferersm but i cant remember them all - which is a symptom in itself. I know i have seen many lists of symptoms in the poosibility of ME after covid thread in the last few months, but i just feel too ill to trawl through the whole thread looking & was wondering whether anyone had any to hand that they could link to for me pleas?
I recommend keeping a food/activity/symptoms journal, as detailed as you feel up to. As you've found, human memory, even without ME, is too fallible for accurately remembering such data. A list of symptoms will help start that, but I don't have a convenient one. Search for the criteria for ME/CFS; that will give the important common ones. I have symptoms that I didn't have back in 2001, but I'm not sure which are from ME and which are just from ageing or other factors.
Hi yes am keeping a journal - thats all in hand - have looked at a few & am modifying for my own use. I just recall seeing people post detailed lists of ME symptoms recently, on social media, really long ones - in discussions/comparisons between long covid & ME. So i was hoping someone here who is either not ill or has a little more in the tank, might have one/some eaily to hand. No worries if no one has anything, but you all know how it is, by the time i have searched I will have nothing left to do anything with it.
Here's one of the most comprehensive lists I've seen so far: https://www.hfme.org/themesymptomlist.htm
A few more: https://me-pedia.org/wiki/List_of_symptoms_in_ME_CFS https://www.stonebird.co.uk/symptoms.html https://ammes.org/symptoms-of-mecfs/
https://twitter.com/user/status/1314291742229762050 https://twitter.com/user/status/1309698623962259456
I always look for "dizziness" in lists of ME symptoms. It seems like it shows up maybe 50% of time. Perhaps that's how often it shows up in patients. I wish it showed up in lists more often. People just can't grasp how incapacitating it can be when it's chronic. "Lightheadedness" tends to sound trivial, possibly because many people experience transient lightheadedness from drinking, standing up too fast, or even just from laughing. Being pinched doesn't sound too bad either, but imagine that pain going on 24-7-365.
True spinning vertigo is the worst. I don't know how it's possible to function at all with that. I think the general term "balance problems" or "balance impairment" should probably be used in lists of ME symptoms. The more specific terms are easily confused with one and other. My concern is that, even if one has many other ME symptoms, balance impairment can be so disabling that, if you don't see it on a list of ME symptoms, you might doubt ME as a possibility. I did that back in the 1980's because there was no mention of "balance problems" in the coverage of Lake Tahoe. Then someone went on national television and said that 80% of the patients in her large CFS support group had balance problems*. [*ETA: After checking, I changed 2/3 of the patients in the support group to 80%. Also this was prior to the coingage of "CFS," so she actually headed an "EBV" support group at the time.]
The spinning type vertigo in my experience is a viral onset. I eventually stop spinning, but the equilibrium imbalances remain for several months. Since my onset was sudden viral vertigo, I think I may have some sort of injury in my vestibular system. The other equilibrium issues are more pronounced when in PEM. When not in PEM I still have to be careful not to look up or down too fast. I can no longer blow-dry my hair with my head upside down since becoming ill. And there's also ataxia
spatial disfunction hardly makes you think about walking into door frames and other things simply because your brain cannot recall just how much space your body occupies it is one of the weird symptoms i get when in pem
They are exactly what i was thinking of @mango thanks so much yes the spatial & proprioceptive stuff is so weird - its one of my most pronounced & noticable 'only significant while in PEM' type symptoms. Also one of the symptoms that imho makes an utter nonsense of the 'it's deconditioning' theory. How can doing more than you are used to make you suddenly feel as if you are hanging upside down,unable to walk in a straight line or start walking into door frames. The whole vestibular dysfunction is something i wish was looked into more.
A slightly different kind of symptoms list by Dr Hng: For those of you who are unable or unwilling to visit Facebook, the same list is available on Google Drive:
