Although I have many of the of the same symptoms that everyone else has here, the splitting headaches, weakness, muscle pain, insomnia, and the complete disorientation and “brain fog”, I have some unusual symptoms. I am not writing this to complain or voice out, but in the hope that maybe someone reading this blog, a patient or doctor, might recognize something and set me with a path/treatment to take.
Here are some of the unusual symptoms. Besides for the above, my condition has also affected vision, sleep, breathing and chest. When my vision issues feel the most predominant I feel that that must be the cause and when I get 10 hours of sleep and wake up in pain with the back of my head feeling week and heavy I feel that that is the cause. And when I fall asleep while struggling to breathe only to reawaken a few seconds later to take another breadth I feel that that is the cause.
My symptoms vary from time to time, always one specific pain being dominant (possibly being the cause of different sleep cycles). (It is almost as if my brain is working at 40% where it takes shifts to supply different functions.) There are times that I am struggling to remember a simple process, formulate my words and remember basic information about myself and my head doesn’t hurt, while there are times that that my head is on fire feeling as if it will split open but I can think clearer. And there are times that I feel that if my vision would be able to refocus and “push forward” everything would be okay and times that I feel that everything is caused by the heaviness at the back base of the head.
· The first onset of my CFS was its affect on my vision. I felt that I could not think while I was wearing glasses and before I had a chance to buy new ones I started “not sleeping” and had become disoriented 24/7. I feel that the muscles/vision is causing the disorientation and if I refocus (by pushing my vision forward) where everything becomes blurry I am seeing “better” and more naturally with less pain. Needless to say, I have seen many many eye doctors.
· The back of my head (near the base) feels as if it weighs a thousand pounds. I often have to hold it with my hands to keep it up. It feels as if something ( a chemical, a sleep function) is missing and if I could only supplement it I would be fine. This usually occurs when I sleep a lot, and if I were to sleep 10 hours this feeling is the worst. It kind of feels as if my brain is getting beauty sleep while missing the real sleep, causing a larger imbalance than if it did not sleep at all.
· My chest feels very tight. I often have an easier time sleeping at a desk or car than in my bed. There are many times that I am falling asleep at my desk studying and when I lie down in bed my mind is clear and I cannot even start to sleep. This is possible caused by stress (maybe) and that maybe my chest has tightened as a default without an actual trigger. My chest is tight even when I am not stressed out and my mind is clear. I feel that maybe my CFS was started by stress and later that took over as being the norm (with whatever chemicals that are released also being released constantly even when I am relaxed). (Although I have taken stress reducing medicine to no avail.)
· My breathing runs at an interesting cycle. There are many nights that I spend hours trying to breathe deeply and am constantly awakened by my own breath. My mind starts falling into a deep sleep with my breathing also starting to become slower and deeper but it takes some physical strength to breathe deeply and that wakes me up. I drift into a deep sleep only to be awakened to take the next deep breath (possibly because my chest is tight). This sometime goes for hours (and is not fun). There are other times that I lie in bed and my body doesn’t start the “falling asleep – start taking deep breaths” mode. On the contrary I need to mentally tell my brain to breathe. It is not as if I am afraid that I might stop breathing or my mind is too full of thoughts (as I have been asked by numerous doctors). Rather the natural deep breathing cycle does not come and I need to consciously take that deep breath.
· And sleep. I feel that I do not go through real sleep. Yes I dream but I can still think in my dreams and am sometimes even conscience of my breathing. Not that the dreams make sense but I can still analyze and make decisions in my dream process. The few times in the past fifteen years where I have slept well (sometimes only for a half hour or so) where I woke up refreshed and feeling great, I remember them as times that the dreams were deeper and “realer” involving emotions and not just a deep “space out” that it currently feels like. I also remember that in the beginning of those deep sleeps, I kind of felt a massage at the back base of my brain. It is hard to describe, but then again most people probably go through it every night that they don’t even take notice of it. It feels as if either part of my brain is not sleeping or that some (chemical?) activity that is supposed to take place during my sleep is not.
I feel that my condition might be a mix of the last two bullets. I think that for some reason my body/brain tries to start up the deep breathing process, which constantly wakes it up. As my brain starts to desperately need sleep it takes over the breathing process, semi-consciously forcing the breathing. At that point it reaches sleep but cannot get a restful sleep as it needs to run the breathing. It then develops into this mode that it takes care of the breathing (at which point I could fall asleep after only 45 minutes or so) but then for days it does the semi-conscience breathing. Every so often I am able to break out of the cycle where my body tries to do the deep breathing by itself and when it can’t the brain takes over. My goal would then be to figure out how to break the cycle in order to restart the natural deep breathing and then be able to breathe normally. I know that much of this paragraph might not be physiologically possible, but this is what it feels like. It is very likely that something else that is more plausible is occurring, but it seems to a non-medical person as such. If you are reading this please keep that in mind, that I can only describe what it feels like and not how something like the above is medically happening.
I do not know if my condition is the cause of any of the issues above, or if they are the symptoms of a global issue or even a completely different sickness. It is also possible that I have two problems and each one is causing the second one not to heal.
I apologize for writing such a long post, but the Al-mighty has many messengers and you might be one of them. If anything has resonated with anyone, or they heard of a way to deal with one of the symptoms, please leave a post or email me at firstname.lastname@example.org.