taniaaust1
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brain fog hits again, I just went to like someones post not realising it was my own... took me a bit to realise why there was no like on that post for me to click.
What do You think is your most disabling symptom?
- Thread starter cman89
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Marc_NL
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The good thing is that you liked your own post.
Would be odd if you were looking for the "report" button
.
Last edited:
trishrhymes
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PEM for me because it's when I step over that very thin and shifting black line into PEM that all my other symptoms come roaring in at high volume for days or weeks at a time and puts me to bed for the duration.
I can cope with most of my symptoms most of the time providing I stay within very restricted limits of physical activity, helped lately by wearing a fitbit that tells me when I've moved too much.
It's the knowledge of what PEM does to me, and the observation over years of push-crash cycles that it's inescapable, that restricts my life so much.
I can cope with most of my symptoms most of the time providing I stay within very restricted limits of physical activity, helped lately by wearing a fitbit that tells me when I've moved too much.
It's the knowledge of what PEM does to me, and the observation over years of push-crash cycles that it's inescapable, that restricts my life so much.
Sidney
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Every one of these is an old companion.
Sidney
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I guess the Multiquote option was too difficult for me to get right...
worldbackwards
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The kind that turn up at the wrong time, pinch all your money and call you a twat.
I'm crying with relief at landing in a place I belong. No one else understands, could possibly comprehend it. Lying in bed, unable to talk, read, tolerate noise or light, locked in my own mind for hours, in agony, sometimes 3 days of a migraine. That's my worst PEM.
Otherwise, I just feel like I'm dying. Beyond exhausted. Aching all over. Every movement slow, like moving through mud. That's everyday. Brain fog, cognitive problems, word and maths deficits - yep. Not pleasant. But I don't care anymore. I just want to not feel like I'm dying.
Otherwise, I just feel like I'm dying. Beyond exhausted. Aching all over. Every movement slow, like moving through mud. That's everyday. Brain fog, cognitive problems, word and maths deficits - yep. Not pleasant. But I don't care anymore. I just want to not feel like I'm dying.
JAH
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Fatigue, fatigue, fatigue, fatigue, fatigue, fatigue
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It depends on what day you ask me this question. I wake up every day not knowing what to expect, although I know I'll be sick. Joint and muscle pain is a given, but it's not as bad some days as others. I wake up every day feeling like I'm hungover, have the flu and worked out too hard. And I wake up exhausted.
Fatigue, PEM and weakness are constant, and those are all getting worse lately. I've been pushing myself to go to the dentist in the last few months to take care of some painful/important issues. I never feel up to doing it, but I force myself. I'm housebound except for doctor and dentist appointments now, but I'm a on a trajectory where I can easily imagine being bedridden and unable to leave the house.
The idea of being in that state and suffering from tooth pain compels me to tackle my dental problems while I still (barely) can. Back in April, I went to my dentist, who I like very much, for the first time since getting sick. I tried to explain to him what had happened to me since contracting this illness, and that I might need to ask him for special accommodations like cancelling at the last minute, or booking double appointments so I could get 2X the work done so I could take fewer trips out of the house.
He's a nice guy and we have a cordial relationship, but he was very uncomfortable as I told him this. He told me I should postpone my dental work and focus on getting better (LOL). I took a break from seeing him for a couple of months, then went back in. I take about two hours to get ready, getting dressed, putting on jewelry and makeup and doing my hair so I can appear as normal as possible to put him at ease.
My partner drives me right up to the front door of his practice, and he is very punctual. If I get there early, I wait in the car to go in, thus avoiding sitting in the waiting room and expending energy on sitting down and then standing up from one of the very low waiting room chairs. (Damn you, mid-century modern furniture!)
Then I pretend I'm not sick, in order not to frighten him and make him feel disinclined to treat me. "Hey doc, how was your vacation?" He just got back from a lovely anniversary trip to New Zealand, BTW, and liked it so much he'd consider retiring there!
Anyway, I went to see him today, and the preparation and performance took so much out of me that I was afraid I was going to pass out walking the few steps to and from the car. I won't even get into climbing the stairs to my third floor flat afterward. I know that PEM from this visit will make holding my head up a challenge for the next week, and then I go back to him for a follow up next Friday.
But back to the original question. Some days my most disabling symptom is gastro-intestinal pain and distress. Sometimes it's respiratory issues. Sometimes it's sensitivity to everyday stimulus like someone having a quiet conversation with me -- I can't take it! Fatigue, pain and PEM are pretty much a constant, but they vary in intensity. I was beginning to experience cognitive issues a few months ago but LDN seems to have helped a lot with that.
I apologize for this ridiculous, lengthy rant. I feel like every time I post on this forum it's meandering, lengthy and veering off-topic to the thread. But I don't know a single person IRL with this disease, and I know you guys get it, so I feel I'm among friends and you'll indulge how annoying I am. IRL I'm pretty quiet, less annoying and don't talk this much.
Fatigue, PEM and weakness are constant, and those are all getting worse lately. I've been pushing myself to go to the dentist in the last few months to take care of some painful/important issues. I never feel up to doing it, but I force myself. I'm housebound except for doctor and dentist appointments now, but I'm a on a trajectory where I can easily imagine being bedridden and unable to leave the house.
The idea of being in that state and suffering from tooth pain compels me to tackle my dental problems while I still (barely) can. Back in April, I went to my dentist, who I like very much, for the first time since getting sick. I tried to explain to him what had happened to me since contracting this illness, and that I might need to ask him for special accommodations like cancelling at the last minute, or booking double appointments so I could get 2X the work done so I could take fewer trips out of the house.
He's a nice guy and we have a cordial relationship, but he was very uncomfortable as I told him this. He told me I should postpone my dental work and focus on getting better (LOL). I took a break from seeing him for a couple of months, then went back in. I take about two hours to get ready, getting dressed, putting on jewelry and makeup and doing my hair so I can appear as normal as possible to put him at ease.
My partner drives me right up to the front door of his practice, and he is very punctual. If I get there early, I wait in the car to go in, thus avoiding sitting in the waiting room and expending energy on sitting down and then standing up from one of the very low waiting room chairs. (Damn you, mid-century modern furniture!)
Then I pretend I'm not sick, in order not to frighten him and make him feel disinclined to treat me. "Hey doc, how was your vacation?" He just got back from a lovely anniversary trip to New Zealand, BTW, and liked it so much he'd consider retiring there!
Anyway, I went to see him today, and the preparation and performance took so much out of me that I was afraid I was going to pass out walking the few steps to and from the car. I won't even get into climbing the stairs to my third floor flat afterward. I know that PEM from this visit will make holding my head up a challenge for the next week, and then I go back to him for a follow up next Friday.
But back to the original question. Some days my most disabling symptom is gastro-intestinal pain and distress. Sometimes it's respiratory issues. Sometimes it's sensitivity to everyday stimulus like someone having a quiet conversation with me -- I can't take it! Fatigue, pain and PEM are pretty much a constant, but they vary in intensity. I was beginning to experience cognitive issues a few months ago but LDN seems to have helped a lot with that.
I apologize for this ridiculous, lengthy rant. I feel like every time I post on this forum it's meandering, lengthy and veering off-topic to the thread. But I don't know a single person IRL with this disease, and I know you guys get it, so I feel I'm among friends and you'll indulge how annoying I am.
IRL I'm pretty quiet, less annoying and don't talk this much. taniaaust1
Senior Member
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dont worry, I dont use that automatic multi quote thing either (if I multiquote i do it manually with typing in the code stuff), someone once explained it to me but it was too much on my brain at time. I dont learn new things easily
taniaaust1
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good idea. I havent been able to get to dentist for quite a while now (lack of support people) and I have teeth which are starting to get sore at times.
Unfortunately thou it isnt your intent and I do understand why you are doing what you are with him, its also giving him the impression that this illness isnt too bad and that we can get over it fairly easily.
New Zealand I just love too.
I relate to this. I am only 4 months in ..in the pvfs stage vs a cfs diagnosis yet. These flu symptoms are horrid. Ive never trued anything for them
You think i should try antiviral ? Do you still get ?
2Cor.12:19
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F.A.T.I.G.U.E.
Mimicry
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Nausea is the most disabling and distressing symptom for me. I've had it on and off for ~5 years or so, sometimes accompanied by gastroparesis, and it's been worse for the last year again. I've given up dairy products and alcohol completely because they immediately make it worse.
Edit. Oh and of course soooo many supplements and meds that help with other symptoms (including creatine, LDN and pentoxifylline) seem to make the nausea and stomach upset worse!
Edit. Oh and of course soooo many supplements and meds that help with other symptoms (including creatine, LDN and pentoxifylline) seem to make the nausea and stomach upset worse!
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the sick feeling
In order, probably: the PEM crash from any cognitive or physical exertion, general crushing fatigue, baseline brain fog, severe muscle weakness and muscle pain from any physical exertion, constant heat stroke feeling, migraines, nausea, etc.
If I could just fix the PEM crashes from cognitive exertion and the baseline brain fog, that would allow me to at least work from home and socialize on the phone, etc.
If I could just fix the PEM crashes from cognitive exertion and the baseline brain fog, that would allow me to at least work from home and socialize on the phone, etc.