I’ve had CFS since my last year in high school. I’m 25 now, so about 8 years. I’ve been variously diagnosed and treated for mono, postural orthostatic tachycardia syndrome, lyme disease, and babesia (red blood cell parasite also from deer ticks). Nothing has really worked. I’m now skeptical that I ever had lyme disease/babesia though I am still pursuing babesia treatment since I have nothing to lose and might have it. (The mono diagnosis was definitely just incorrect.) I’ve never been well enough to work, go to college or live on my own.
My problem is overwhelmingly the fatigue/lack of energy, postural orthostatic issues to a lesser extent (stamina, ability to be upright or standing, mild cognitive issues from lack of adequate blood flow), and also mild neurological symptoms and a mild constant headache. I think if I could just get rid of the fatigue, I could live happily and productively with everything else.
My condition is mainly stable. I am still getting ever so slightly worse as the years go by, which is mainly evident in my increasing need for sleep (10 hours then 11 to 12 hours, now it’s at 13, which I rather begrudge) and an occasional new mild odd neurological symptom.
At this point, I’m working towards being independent on the assumption that I’ll never get any better. I hope that’s not the case, but I’ve spent a long time just assuming that everyone was right when they said that they’d find the cause and I’d get back to normal, and I need to get on with living.
I am on antidepressants and have mild-moderate situational depression, but it’s clear that depression is not the underlying cause.
I’m on medication to lower my heart rate and increase my blood pressure (postural orthostatic tachycardia syndrome, which I definitely have - basically my body doesn’t compensate for the effects of gravity on blood flow (specifically to the brain) in a healthy way. Don’t know why.)
It’s also recently (yay internet research) become clear to me that I have low blood sugar issues, and am preparing to test my blood glucose at various points during the day/after eating various types of food, after which I will see a dietitian so she can help me structure/balance my diet to best cope with the hypoglycemia. And of course if my home blood glycose monitoring reveals anything that can be diagnosed/treated, that will happen as well. Not really holding my breath on that one, though, since my bloodwork comes back pretty much normal too and although I’ve been diagnosed with various things that I do indeed have, they all turn out so far to be mild and basically side issues (celiac disease, mild sleep apnea).
It’s clear to me that food (and, like I said, blood sugar, I think) has a huge effect on my energy/fatigue levels, so I’m working mainly on eating an uberhealthy diet. I then plan to exercise as much as I can (within healthy limits, of course) with the energy boost I hope to get from the healthy diet, and hopefully doing both of those things will improve my functioning to the point that I can start really pursuing education/work and have a social life. Right now my main problem is not really having enough energy to prepare all that healthy food, but I’m slowly adding in healthy meals one at a time that are as simple/quick/easy to prepare as possible and am making progress.
(I’ve written on the dope about my brush with mental illness (schizoid personality disorder), which was exacerbated by my illness and has caused a fair amount of depression for me, but that’s another one of those side rather than main issues, in case you remember that and are curious if that could account for a lot of my fatigue via depression.)
Like you, my fatigue levels vary greatly throughout the day, and I’m really hoping to link that to blood sugar swings. Although I’ve been tested for diabetes and had my blood sugar taken as part of weekly bloodwork when I was on a picc line for iv antibiotics, I think it’s quite possible that I have issues with hypoglycemia that have never really been picked up on. One time, my blood sugar was in the 50’s when I had my weekly morning blood work (picc line) and several days ago, I used my home blood glucose monitoring thingie to test my blood sugar level when I was feeling particularly crappy and it was 53, so I think there’s hope for improvement there.
Anyway, definitely pursue the blood glucose thing if you feel it’s a problem. You can get a home monitoring device and record the blood sugar swings when you think you have them, to rule it out if nothing else.
And don’t get discouraged by my experience. All of my various doctors find my case to be quite unusually intractable.
Good luck.
Yeah, you’d think it would be the first thing they would suspect wouldn’t you? But despite repeated discussions, none of the experts seem to think I should be this tired all the time. Apparently it isn’t too unlike some forms of bariatric surgery and neither my surgeon nor my GP think that this is the cause.