(Update : there is mast cell involvement as a cause for all of this something that I did not know yet when I wrote this. See post “There is mast cell involvement” )
This illness gives you truly an incredible amount of symptoms. Seriously, if it all sounds crazy I am the first one to say so, but that is what you get with this illness. When I was at my most ill absolutely nothing worked right anymore in my whole body. These are some of the things I have experienced. And no, nothing is made up or over-exaggerated. I am happy to say that I managed to make some of these symptoms less or go away, see it more of a list of everything I noticed over time. Hopefully in the future I will go into more detail about it and how it all developed and so on. More on the specific brain / neurological / mental health / general functioning symptoms later.
Some of the things that are commonly associated with ME / CFS :
– Severe fatigue, post-exertional malaise, exercise intolerance
– Pain literally everywhere / touch sensitive / very low pain tolerance
– Muscle aches / pain / fatigue / repeated exercise impossible / fybromyalgia-like things
– Sort of sudden stabbing / pricks and needle like feelings happening in the body / muscles
– Joint pain (quite severe general problems)
– Shortness of breath
– Generally feeling unwell / sick
– Sore throat / inflamed mouth practically constant / difficulty talking for long
– Tender / swollen lymph glands mostly neck practically constant
– Sleep disturbances : I never feel rested / refreshed anymore no matter how much I sleep. Pattern all messed up / variable. Hypersomnia but also insomnia in between. Drowsiness.
– POTS / orthostatic intolerance – like things, woozy when standing up, strong increase heart rate picking up later.
– Balance problems (was also not even walking straight).
And of course the :
– Complete and general dysfunctioning in life. Anything resembling a normal life is gone.
– Alcohol intolerance / strange reacting to. (Well I can already tell you that at least this one makes perfect sense if you think about it when you already have an endogenous acetaldehyde problem).
-Digestive tract problems. For a while severe. Mostly diarrhea (And the digestive tract is what it is all about).
Some other mostly physical symptoms :
– Permanent red face and severe episodes of face flushing on top of that with associated feelings
– Permanent red skin from head to toe
– Severe sweating / sweating episodes
– Dry eyes / dry mouth (thought I had Sjogren syndrome)
– Stiff neck ( could not look behind / park my car difficult)
– Burning / slightly itchy skin sensations
– Eye problems : floaters, strange vision / difficulty focusing / became more far-sighted.
– Headaches. Mild and was bearable but at one time I was very worried to develop migraine.
– Polyneuropathy / nerve numbness (confirmed by EMG)
– Gerd symptoms / acid reflux / strong increase stomach acid
– Strong increase food reactions / effects
– Coughing all day
– Arteries / veins visual changes / problems / strange blood flow problems
– Low almost flat-lined saliva free cortisol levels during the day
– Heart rhythm changes / palpitation-like things
– Strong increase acne
– Developed fungus nails on all toes at once and something looking like a patch of athletes foot
– Mild gingivitis
– Eczema (legs , itching lower legs)
– All the nerves of my teeth hurt
And this list is far from complete….