Hi,
Apologies for the long post, and thanks for those that take time to read, much appreciated!
So as mentioned in my introductory post, I've had chronic fatigue syndrome for around 10 years, of unknown origin, wiped out mentally and physically all of the time. I can't engage in any kind of strenuous physically activity, or my body effectively shuts down, as is the case for everyone I expect. This was extremely difficult at the beginning, but I have learnt to accept the reality over the years, after pursuing every avenue I could. I don't really have many days where things are a lot worse than others, but feel like I'm constantly living on my absolute limits, where it is difficult to function, particularly when stress, continuous noise and just generally what occurs normally when life happens. It however remains extremely frustrating, and even more so with two young children and another on the way
"Brain Fog":
My main question today concerns 'brain fog', and I have read many things over the years, but have only recently wondered if I have actually been experiencing this as many others seem to be. I have been living with various cognitive difficulties, for about the same time as the CFS has been around, however, for whatever reason I had put these down to an unknown cause, unrelated to CFS.
The way I have seen 'brain fog' described by some are some of the following: heavy feeling in their head, a slowness of thoughts, inability to string thoughts together, difficulty finding words, difficulty speaking with others, confusion, all seemingly fitting with the analogy of being in a thick fog, but in the mind. These are in addition to being unable to focus, retain new information and short term memory problems, people at times forgetting what they did only seconds before, or unable to recall other past memories; all of which seemingly experienced during times of 'brain fog', so in the context of being in a fog, as mentioned above.
For me personally, I have big difficulties with short term memory. Without writing things down, it's almost certain that I will forget what I needed to remember. I need to record all meetings, because if not, there is absolutely no way I can retain or will be able to remember what is being spoken off, even a short time after the meeting has finished. It's often the case that I will do a simple task, such as washing my hair, but immediately after doing so I will have no memory of doing it and so will end up making a decision to do the task again, just in case. I used to read a lot, but can now no longer retain or remember what is written.
However, for me this is a constant state, and has been for many years, with no real fluctuation in the things I have mentioned. I cannot relate to any sense of feeling like I'm in a 'fog', slowness of thought, confusion, inability to string thoughts or words together etc. I do however know someome who used to complain of having brain fog, and at the times he said it was bad he would struggle with slowness of thought, seemed exhausted, struggled to find words, slurring words at times, and fitted exactly the description of 'brain fog' that I have seen users mention on forums. I also know someone else with fibromyalgia, who has fibro fog, and describes things exactly the same way. This person mentioned that when they were in a 'crisis' they wouldn't have any of these symptoms, until the 'fog' descended, and would remain until the 'fog' lifted.
I would be really interested to know if there are others here who have CFS, and who have the problems I have mentioned with short term memory and retaining information, but are not experiencing any 'fog' or the other symptoms mentioned above?
"Thoughts":
My mind is also completely silent vitually all the time, so I don't have thoughts entering my mind unexpectedly, unless I am putting them there. When people talk about racing thoughts or similar, this is as far as possible from my day to day experience, and again has been the case for about 10 years or so. It is actually quite peaceful in that sense, and I would now struggle with the idea of any thoughts just appearing in my mind randomly, uless I actually wanted to think about something and so initiated some. My wife will often mention that she sometimes cannot 'switch off' due to the number of thoughts she has having while lying on the bed at night, such as tasks she needs to do. Again, I haven't experienced anything like this for about 10 years. It's silent when I hit the pillow and sleeping is never a problem. I am however unable to meditate on a topic, as my mind doesn't allow me to do so, no matter how hard I try. It's simply impossible.
Can anyone else relate?
"Emotions":
I also experience what can best be described as as a kind of disconnect, when it comes to feeling, in terms of my interaction with people and the words around me. I still feel of course, but it just seems to be in a more detached, restricted way, compared to how they were before all this started, as that was completely different, and probably normal then. When I say 'detached', I don't mean that in any sense like feeling like I am out of my body or anything even similar, but just that I don't feel like I am connecting with the emotions or moment as fully as I could be, and so emotionally things are dull. I also don't seem to experience the same pleasure in the things I used to, and this has been a constant for years so.
With all of the above mentioned, I feel quite peaceful most of the time, and not depressed or anything like that, but thought that here would be a good place to share everything and to see if anyone else can relate to my experiences? I'm sure I have CFS, but at the same time wondering about the things shared, and whether they are also caused by this condition.
Look forward to reading any comments.
Thanks!
Apologies for the long post, and thanks for those that take time to read, much appreciated!
So as mentioned in my introductory post, I've had chronic fatigue syndrome for around 10 years, of unknown origin, wiped out mentally and physically all of the time. I can't engage in any kind of strenuous physically activity, or my body effectively shuts down, as is the case for everyone I expect. This was extremely difficult at the beginning, but I have learnt to accept the reality over the years, after pursuing every avenue I could. I don't really have many days where things are a lot worse than others, but feel like I'm constantly living on my absolute limits, where it is difficult to function, particularly when stress, continuous noise and just generally what occurs normally when life happens. It however remains extremely frustrating, and even more so with two young children and another on the way
"Brain Fog":
My main question today concerns 'brain fog', and I have read many things over the years, but have only recently wondered if I have actually been experiencing this as many others seem to be. I have been living with various cognitive difficulties, for about the same time as the CFS has been around, however, for whatever reason I had put these down to an unknown cause, unrelated to CFS.
The way I have seen 'brain fog' described by some are some of the following: heavy feeling in their head, a slowness of thoughts, inability to string thoughts together, difficulty finding words, difficulty speaking with others, confusion, all seemingly fitting with the analogy of being in a thick fog, but in the mind. These are in addition to being unable to focus, retain new information and short term memory problems, people at times forgetting what they did only seconds before, or unable to recall other past memories; all of which seemingly experienced during times of 'brain fog', so in the context of being in a fog, as mentioned above.
For me personally, I have big difficulties with short term memory. Without writing things down, it's almost certain that I will forget what I needed to remember. I need to record all meetings, because if not, there is absolutely no way I can retain or will be able to remember what is being spoken off, even a short time after the meeting has finished. It's often the case that I will do a simple task, such as washing my hair, but immediately after doing so I will have no memory of doing it and so will end up making a decision to do the task again, just in case. I used to read a lot, but can now no longer retain or remember what is written.
However, for me this is a constant state, and has been for many years, with no real fluctuation in the things I have mentioned. I cannot relate to any sense of feeling like I'm in a 'fog', slowness of thought, confusion, inability to string thoughts or words together etc. I do however know someome who used to complain of having brain fog, and at the times he said it was bad he would struggle with slowness of thought, seemed exhausted, struggled to find words, slurring words at times, and fitted exactly the description of 'brain fog' that I have seen users mention on forums. I also know someone else with fibromyalgia, who has fibro fog, and describes things exactly the same way. This person mentioned that when they were in a 'crisis' they wouldn't have any of these symptoms, until the 'fog' descended, and would remain until the 'fog' lifted.
I would be really interested to know if there are others here who have CFS, and who have the problems I have mentioned with short term memory and retaining information, but are not experiencing any 'fog' or the other symptoms mentioned above?
"Thoughts":
My mind is also completely silent vitually all the time, so I don't have thoughts entering my mind unexpectedly, unless I am putting them there. When people talk about racing thoughts or similar, this is as far as possible from my day to day experience, and again has been the case for about 10 years or so. It is actually quite peaceful in that sense, and I would now struggle with the idea of any thoughts just appearing in my mind randomly, uless I actually wanted to think about something and so initiated some. My wife will often mention that she sometimes cannot 'switch off' due to the number of thoughts she has having while lying on the bed at night, such as tasks she needs to do. Again, I haven't experienced anything like this for about 10 years. It's silent when I hit the pillow and sleeping is never a problem. I am however unable to meditate on a topic, as my mind doesn't allow me to do so, no matter how hard I try. It's simply impossible.
Can anyone else relate?
"Emotions":
I also experience what can best be described as as a kind of disconnect, when it comes to feeling, in terms of my interaction with people and the words around me. I still feel of course, but it just seems to be in a more detached, restricted way, compared to how they were before all this started, as that was completely different, and probably normal then. When I say 'detached', I don't mean that in any sense like feeling like I am out of my body or anything even similar, but just that I don't feel like I am connecting with the emotions or moment as fully as I could be, and so emotionally things are dull. I also don't seem to experience the same pleasure in the things I used to, and this has been a constant for years so.
With all of the above mentioned, I feel quite peaceful most of the time, and not depressed or anything like that, but thought that here would be a good place to share everything and to see if anyone else can relate to my experiences? I'm sure I have CFS, but at the same time wondering about the things shared, and whether they are also caused by this condition.
Look forward to reading any comments.
Thanks!
