cman89
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What symptom, if you could have it completely resolved, do do you think could have the biggest impact on quality of life?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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What do You think is your most disabling symptom?
- Thread starter cman89
- Start date
Hell...Hath...No...Fury..
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Brain fog / general cognitive short circuiting
cman89
Senior Member
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- Hayden, Idaho
Cognitive more so than ANS stuff?
PEM and general weakness / lack of stamina / physical energy
Also the increase of all symptoms in the morning. This has caused so many problems in finding and keeping work when the other symptoms were low enough for me to even try.
the infections - sinus and the flus that go on for a year
if one had a magic wand...
Also the increase of all symptoms in the morning. This has caused so many problems in finding and keeping work when the other symptoms were low enough for me to even try.
the infections - sinus and the flus that go on for a year
if one had a magic wand...
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Hell...Hath...No...Fury..
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Definitely. When my POTS is normalized with meds, this creates catatonic brain fog. So for me i'd rather keep the 150bpm and a slightly better functioning brain.
TigerLilea
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Lack of energy.
ahmo
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Also cognitive energy. I'd dearly love to exercise 3 times a week, instead of once every 3 weeks. But my daily life is possibly more affected by my limited cognitive abilities. Well, maybe both equally. My other symptoms are reasonably well controlled at this point.
trails
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Cognitive, also...without question.
halcyon
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POTS/NMH and PEM are by far the worst and most disabling. I could live a relatively normal life with all the other symptoms.
CFS_for_19_years
Hoarder of biscuits
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Lack of energy. My preferred manner of existence is lying in bed. With more energy I could be up and about more.
Jennifer J
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My chemical and scent sensitivity with angioedema reactions. I'm practically a girl in a glass bubble. I have not been able to find a different home to live in with many years of trying. Can't be in most buildings, vehicles, or even out amongst nature if there's any kind of fragrance. Limits people I can be around, things I can own, what I can eat and medications, too.
Then I would say as @ukxmrv:
Then I would say as @ukxmrv:
This has me bedbound most of the time.
alex3619
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- Logan, Queensland, Australia
Lack of energy for activity is bad, and brain fog or a lack of cognitive energy is bad, but the cognitive holes are worse. There are some things my brain does badly, for moments, or not at all. Like 3D geometry. I sometimes cannot open an open plastic bag. Or acting on plans. I can plan the heck out of things, but then start to do them and ... cannot figure it out. Or math. I used to tutor and briefly teach some math at the university level. I have times when I cannot count to 3. Those holes are subtle, I only find them when I try to do something and nothing is there. These are however fundamental limitations and I cannot work around them. Its even more confusing as the severity waxes and wanes, so sometimes I have a small capacity, and at other times none.
Mary
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PEM, which has limited me to 3-1/2 hours of light activity a day for 15 years, and lack of energy production in general. Amazingly, I don't have brain fog or cognitive issues --
*GG*
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I agree, PEM is better than is used to be, perhaps that is because I don't work anymore? Do feel weak /lack of stamina (dare I say fatigue?), on the day after exercise. If the pain, not significant was gone, that would be nice ass well!
Do have brain fog the day after doing aerobic as well.
GG
Dechi
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Permanent, 24/7 muscle weakness and insomnia. Rid me of those 2 and I would be good to go !
taniaaust1
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I cant answer this question as I have several different ones so severe they prevent me from being able to leave my house without support and even if one fixed one, their would still be the others so I still wouldnt be very functional. Extremely disabling MCS, POTS, PEM and brain problems.
* MCS (I can collapse while out due to this and its severely limiting as I just cant have just anyone into my home and a chemical hit can leave me in such a confused unfunctional state where I cant do anything. Once while out and getting hit with a chemical I didnt even know any more my address where I'd lived for 17 years so couldnt get home).
* POTS (makes me have to have someone push me in wheelchair if out). Leaves me struggling to cook as I struggle to stand for long.
* the brain memory problems.. like as if I have Alhemizers
I need help just to go out and make sure I'm not trying to leave the house not dressed properly, or dirty and without things like my keys. Back when I could still walk when out, I had support workers have to several times pull me off of road as I forgot I was crossing a road while I was crossing it and almost got hit by cars. Leaves me struggling to cook.
* the PEM (Im hit with this very fast and severely if Im able to do things and the consequence of this can leave me unable to even roll over in bed). this one probably "feels the worst" then any of the others when hit with severe PEM, I hate feeling terribly ill. Huge restriction on how much I can do or I end up felling like Im dying (feeling poisoned)
I found out the other day the hard way that I PEM badly right thought the next day if I have to focus for 90 mins (I think my thinking limit is only about an hour a day eg if I have a visitor here and are trying to talk to them, Im really struggling and starting to get unwell after about a hour of face to face chat (far faster if Im on a phone as that takes more focus).. I havent timed that but that's my estimate.
I dont get to physically PEM much though as the POTS very quickly stops me from being able to reach that point with activites. Its hard to PEM with over physical activity when one is having to use a wheelchair which you cant push. So I guess currently the brain stuff is PEMing me more
I really do not know which of those things for me is worst as they are all horrific issues, its like asking someone to choose between being blind or having their legs amputated, which do you prefer? lol.
(in the past sleep problems would of been on that list too, my sleep issues at one point were so bad that I was going for up to 4-5 days without no sleep at all and completely was unfunctional, actually getting halluncinations due to that. You can not function without sleep)
* MCS (I can collapse while out due to this and its severely limiting as I just cant have just anyone into my home and a chemical hit can leave me in such a confused unfunctional state where I cant do anything. Once while out and getting hit with a chemical I didnt even know any more my address where I'd lived for 17 years so couldnt get home).
* POTS (makes me have to have someone push me in wheelchair if out). Leaves me struggling to cook as I struggle to stand for long.
* the brain memory problems.. like as if I have Alhemizers
I need help just to go out and make sure I'm not trying to leave the house not dressed properly, or dirty and without things like my keys. Back when I could still walk when out, I had support workers have to several times pull me off of road as I forgot I was crossing a road while I was crossing it and almost got hit by cars. Leaves me struggling to cook.
* the PEM (Im hit with this very fast and severely if Im able to do things and the consequence of this can leave me unable to even roll over in bed). this one probably "feels the worst" then any of the others when hit with severe PEM, I hate feeling terribly ill. Huge restriction on how much I can do or I end up felling like Im dying (feeling poisoned)
I found out the other day the hard way that I PEM badly right thought the next day if I have to focus for 90 mins (I think my thinking limit is only about an hour a day eg if I have a visitor here and are trying to talk to them, Im really struggling and starting to get unwell after about a hour of face to face chat (far faster if Im on a phone as that takes more focus).. I havent timed that but that's my estimate.
I dont get to physically PEM much though as the POTS very quickly stops me from being able to reach that point with activites. Its hard to PEM with over physical activity when one is having to use a wheelchair which you cant push. So I guess currently the brain stuff is PEMing me more
I really do not know which of those things for me is worst as they are all horrific issues, its like asking someone to choose between being blind or having their legs amputated, which do you prefer? lol.
(in the past sleep problems would of been on that list too, my sleep issues at one point were so bad that I was going for up to 4-5 days without no sleep at all and completely was unfunctional, actually getting halluncinations due to that. You can not function without sleep)
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Marc_NL
Senior Member
- Messages
- 471
Cognitive (migraine / brain fog / memory) is my biggest issue as well.
An other problem is that I’m so easily distracted and randomly start googling words I read here on the forum (if I'm not sure about their meaning
)
An other problem is that I’m so easily distracted and randomly start googling words I read here on the forum (if I'm not sure about their meaning
)
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Right now if I could magic away the MCAS it would improve my quality of life - going anywhere is so hard due to fragrances/smoke/chemicals and it means I don't tolerate drugs well - had another pseudo seizure yesterday after taking a drug I take regularly and keeps me functioning.
Absolutely brain fog. I've seen major improvements since I started taking L-5-MTHF, but I still have a ways to go before I'm properly 'fixed'.
It was especially notable when I had to cut back on my dosage due to problems in the company that supplied it. I was on 1/8th of a regular dose for about a week or so and I experienced serious regression in terms of my symptoms.
It was especially notable when I had to cut back on my dosage due to problems in the company that supplied it. I was on 1/8th of a regular dose for about a week or so and I experienced serious regression in terms of my symptoms.