Hi there,
This has probably been talked about before and I may just be getting desperate. I’m 20y/o female and was left bedbound for about a month in January 2018 and was diagnosed with ME/CFS/ I have since recovered significantly but have flare ups and I was sent to a neurologist but all my MRI, EMG and blood tests came back clear. I may just be really struggling to accept ME as a diagnosis because there is so little known about it/ I feel like the name ‘chronic fatigue’ doesn’t reflect the seriousness of my symptoms/ there is no treatment. It sounds terribly ridiculous, because of course I don’t want to be ill but at least if I had another illness I could try some medications etc instead of just being left. I guess my question is should I just try and accept M.E as a diagnosis even tho I have a lot of symptoms which fit into other things such as MS or do people have any suggestions/ other avenues/ anecdotes which might help. It has been nearly 2 years of being ill now…
My main symptoms are:
Persistent fatigue
Weakness particularly in my legs
Pain especially in my thighs and back
A feeling of tightness in my thighs
Feeling of being weighed down, a heaviness that makes in difficult to move
TIngling like fizzy water in my legs
Sometimes sore eyes
A really dry mouth
Headaches
Cognitive fog
Stiffness to the point where I can’t properly move my hands in the morning
Difficulty getting out of bed
Tinnitus.
Difficult balancing
Near blacking out when standing up