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Poll: What is your most disabling symptom?
Peter T
Senior Member (Voting Rights)
I voted, but don’t really feel any one symptom is the most disabling, rather it is a constellation of a number of issues. Especially as all in the list above vary with each other.
I put cognitive impairment as that is what is frustrating me the most at present, but another day I might have picked another answer.
I put cognitive impairment as that is what is frustrating me the most at present, but another day I might have picked another answer.
Jonathan Edwards
Senior Member (Voting Rights)
Old age.
Voted fatigue after much deliberation, because I experience that more often and it stops me, but when the fatigue isn't there the PEM I get from doing too much is more disabling than the fatigue would have been.
Keela Too
Senior Member (Voting Rights)
PEM
I’d love to be able to sometimes “push through” and not be concerned about the potential long-term after effects of doing stuff. Of course the other items in the list are distinctly unpleasant when they are playing up. However, I regard them as markers to make me slow-up and warn me that I am probably pushing my limits again.
It’s the threat of what PEM can do that makes me self-limit. And even so, I still sometimes do too much and have PEM aftereffects that make me worry I’ve overshot my threshold.
Currently I think I can get away with doing a bit more as a supplement I’ve just found (turmeric, curcumin, ginger & black pepper) seems to mean I can recover more easily from a busier day, but I still know I can’t be too reckless! PEM stinks, because experiencing it means I have over done it, and that’s like drawing back the trigger on a sort of Russian Roulette, where the outcome cannot be known.
I’d love to be able to sometimes “push through” and not be concerned about the potential long-term after effects of doing stuff. Of course the other items in the list are distinctly unpleasant when they are playing up. However, I regard them as markers to make me slow-up and warn me that I am probably pushing my limits again.
It’s the threat of what PEM can do that makes me self-limit. And even so, I still sometimes do too much and have PEM aftereffects that make me worry I’ve overshot my threshold.
Currently I think I can get away with doing a bit more as a supplement I’ve just found (turmeric, curcumin, ginger & black pepper) seems to mean I can recover more easily from a busier day, but I still know I can’t be too reckless! PEM stinks, because experiencing it means I have over done it, and that’s like drawing back the trigger on a sort of Russian Roulette, where the outcome cannot be known.
MarcNotMark
Senior Member (Voting Rights)
Other poll about symptoms:
https://www.s4me.info/threads/if-yo...ur-me-cfs-symptoms-which-would-they-be.19187/
Wyva
Senior Member (Voting Rights)
I see PEM as a collection of symptoms instead of a single symptom, so I didn't even realize it was in the list, I just went straight for cognitive impairment. 
Anyway, out of the single symptoms, cognitive impairment is the worst for me because 1) It is one of those symptoms I always have, even without PEM, it is just not as bad. 2) If my body was affected but my cognitive performance was not, I feel I could still do a lot of things: online work, a lot more online advocacy, keeping in touch with people via the internet instead of dreading it etc etc etc. But with this constant brain fog all of that is taken away and everything is a struggle. My cognitive PEM is really bad and this is my biggest hurdle with this disease, that whatever I try to do cognitively, it always feels kind of like mental torture with these very rusty cogwheels in my brain and then there is also a price if I actually do some more demanding mental work. I could accept the physical limitations as I fluctuate between mild and moderate and I'm not severe but it is a problem that I cannot properly use my brain on top of that.
The worst for me was when I wrote articles on my website about ME/CFS quite regularly + the letters to the medical authorities etc and it took so much out of me that I just completely stopped doing anything for about a year, abandoned the whole project. I disappeared from here too, maybe some of you remember it.
Anyway, out of the single symptoms, cognitive impairment is the worst for me because 1) It is one of those symptoms I always have, even without PEM, it is just not as bad. 2) If my body was affected but my cognitive performance was not, I feel I could still do a lot of things: online work, a lot more online advocacy, keeping in touch with people via the internet instead of dreading it etc etc etc. But with this constant brain fog all of that is taken away and everything is a struggle. My cognitive PEM is really bad and this is my biggest hurdle with this disease, that whatever I try to do cognitively, it always feels kind of like mental torture with these very rusty cogwheels in my brain and then there is also a price if I actually do some more demanding mental work. I could accept the physical limitations as I fluctuate between mild and moderate and I'm not severe but it is a problem that I cannot properly use my brain on top of that.
The worst for me was when I wrote articles on my website about ME/CFS quite regularly + the letters to the medical authorities etc and it took so much out of me that I just completely stopped doing anything for about a year, abandoned the whole project. I disappeared from here too, maybe some of you remember it.
Ash
Senior Member (Voting Rights)
I put cognitive impairment. Because although I think pain is up there with it, as is OI for stopping me doing stuff, I am in rolling PEM and have very high fatigue, it’s the cognitive impairment that means that I can’t manage my condition well enough to improve it.
I can’t write letters as I to used to or get through all the disability phone calls that must be made. I can’t plan. I can’t monitor or keep track of anything. I forget to drink sometimes even I forget how to drink. I can’t take my medication on time or sometimes all.
I remember Terry Pratchett when he was a little way into his dementia saying he could still write stories and have discussions with people perfectly well but he couldn’t work out how to put on his own trousers they just confused him. I remember that really hit home as being just like me. I didn’t forget how to dress but I didn’t forget many other things.
Like how to open doors and stuff.
I got myself checked at a neurologist to see if I had super early onset dementia or something, they laughed at me and said I had demonstrably high cognitive capacity, because I’d written a decent letter outlining my cognitive difficulties which they told me wouldn’t have been possible if I actually had cognitive difficulties. It had taken me quite some time to write the letter.
I passed this neurologists memory tests, but my processing was slow, which at least made them begin to acknowledge that I was having to work harder with normal stuff, and start believing my self reports of difficulties in a way that they hadn’t found themselves able to do without watching me lose capacity in front of them as the appointment progressed.
I can’t write letters as I to used to or get through all the disability phone calls that must be made. I can’t plan. I can’t monitor or keep track of anything. I forget to drink sometimes even I forget how to drink. I can’t take my medication on time or sometimes all.
I remember Terry Pratchett when he was a little way into his dementia saying he could still write stories and have discussions with people perfectly well but he couldn’t work out how to put on his own trousers they just confused him. I remember that really hit home as being just like me. I didn’t forget how to dress but I didn’t forget many other things.
Like how to open doors and stuff.
I got myself checked at a neurologist to see if I had super early onset dementia or something, they laughed at me and said I had demonstrably high cognitive capacity, because I’d written a decent letter outlining my cognitive difficulties which they told me wouldn’t have been possible if I actually had cognitive difficulties. It had taken me quite some time to write the letter.
I passed this neurologists memory tests, but my processing was slow, which at least made them begin to acknowledge that I was having to work harder with normal stuff, and start believing my self reports of difficulties in a way that they hadn’t found themselves able to do without watching me lose capacity in front of them as the appointment progressed.
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I chose cognitive impairment, but PEM worsens cognitive impairment if I try to do too much. Nearly everything I need or want to do requires at least moderate cognitive capacity. So its the most disabling, affecting even physical tasks either directly or indirectly.
In the early 80s I would have picked GI issues. In late 80s through early 2000s I would probably have picked pain. In the early 90s I might have picked PEM for a few years, though I did not have an understanding of PEM then. In the mid 90s I was in a continual crash cycle, though it was the pain that disabled me the most. So was it PEM, or pain?
More recently a collapse of my circadian rhythm made sleep much more a problem. Good news here is my cataract surgery has improved my sleep patterns, though I am still evaluating this.
This disease has not just variability between patients, but variability over time, and with changing circumstances.
In the early 80s I would have picked GI issues. In late 80s through early 2000s I would probably have picked pain. In the early 90s I might have picked PEM for a few years, though I did not have an understanding of PEM then. In the mid 90s I was in a continual crash cycle, though it was the pain that disabled me the most. So was it PEM, or pain?
More recently a collapse of my circadian rhythm made sleep much more a problem. Good news here is my cataract surgery has improved my sleep patterns, though I am still evaluating this.
This disease has not just variability between patients, but variability over time, and with changing circumstances.
Yeah circadian is restricting you might have some level of energy most days like me but if you’ve got your best level for the day available for a couple of hours from 2am you can keep on top of indoor stuff like washing clothes, the dishes, shopping delivery orders. but it’s no use for getting a urine sample to the Drs by 11.30 or a dentist appointment
Wonko
Senior Member (Voting Rights)
Cognitive impairment is the most 'damaging' symptom of ME for me. I can't organise things in my own head enough to get things done - a simple (and i do mean simple - but one step up from beans on toast) recipe can take me months to get a day where it's possible to even attempt let alone be edible - and of course the process of doing a 'new' thing, even badly, probably especially badly, often crashes me for a considerable time.
That's simple everyday stuff, more complicated stuff - I can;t even organise my thoughts well enough to put down notes/fragments so someone else can help me with things - things currently that need doing are summary of a couple of conditions for GP - to get referred - notes for PIP questions so someone can help me to turn them into answers etc. (that one's been going on for years).
So, CI stops from doing things, or even being capable of doing enough so someone else has a place to start in asking pertinent questions so that they can help/do things for me.
It is the thing that is most likely to do me serious harm.
Obviously day to day it's PEM, pain, fatigability and of course sleep issues. GI issues recently reared their ugly 'head' again, all severely limiting what I can physically do - but the thing that's causing me the most worry/concern, and is likely to cause me major issues, impacting on other symptoms, and, probably irrelevantly, having been costing me around half the income I should have had over the last several years, and likely to cost me roughly half the income I currently have, is cognitive impairment.
That's simple everyday stuff, more complicated stuff - I can;t even organise my thoughts well enough to put down notes/fragments so someone else can help me with things - things currently that need doing are summary of a couple of conditions for GP - to get referred - notes for PIP questions so someone can help me to turn them into answers etc. (that one's been going on for years).
So, CI stops from doing things, or even being capable of doing enough so someone else has a place to start in asking pertinent questions so that they can help/do things for me.
It is the thing that is most likely to do me serious harm.
Obviously day to day it's PEM, pain, fatigability and of course sleep issues. GI issues recently reared their ugly 'head' again, all severely limiting what I can physically do - but the thing that's causing me the most worry/concern, and is likely to cause me major issues, impacting on other symptoms, and, probably irrelevantly, having been costing me around half the income I should have had over the last several years, and likely to cost me roughly half the income I currently have, is cognitive impairment.
oldtimer
Senior Member (Voting Rights)
In the previous poll I chose cognitive impairment and headaches. This time, with only one choice, I'm choosing pain. My constant tension headache is severe a lot of the time and I feel that the brain fog would go away if only the headache would. Can't trust feelings though.
alktipping
Senior Member (Voting Rights)
Nausea seems to be missing the constant feeling of being ill just grinds me down . I chose pem because every time i have a serious crash it means years of worse functioning.
Peter T
Senior Member (Voting Rights)
At present I am mostly not experiencing significant nausea, but I definitely can relate to it, as I had a number of years when it was pretty constant. The trifecta that really got me was feeling both hungry and nauseous but with no energy to try to navigate this dilemma to try to find something to eat that would moderate the hunger without exacerbating the nausea.
If I could eliminate just one symptom it would probably be cognitive impairment, on the basis that it is the most frustrating, humiliating, and distressing symptom.
But it is not a question that can really be answered neatly. They are all bloody awful. Any one of them would be serious on its own.
They also come more-or-less as a package for me. The relative contribution can vary, but overall they largely rise and fall together.
But it is not a question that can really be answered neatly. They are all bloody awful. Any one of them would be serious on its own.
They also come more-or-less as a package for me. The relative contribution can vary, but overall they largely rise and fall together.
Andy
Retired committee member
My take is that all the other symptoms are bad enough, but what adds additional disability is PEM. I either overexert myself in trying to overcome, however temporarily, the restrictions put on me by the other symptoms and trigger PEM and have my low functioning level forcibly reduced, or I limit myself in an attempt to avoid PEM in order to achieve a more consistent, but reduced, level of functioning. Either way, I can't do as much as I potentially could.