Past 1 Year BFS: Fatigue Experience?

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BFSDiner

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For those of you who had BFS for more than 12 months:1) Did you deal with generalized fatigue that made you feel as if you had zero energy and/or a flu during the first several months?If So ....2) Did this fatigue last several weeks and months, sometimes coming and going in bouts?If so ....3) Has this fatigue completely stopped now that you're past the 1 year mark, though you continue to twitch and maybe have other symptoms? Has the fatigue completely gone, never to return?Just trying to determine how common this is, because it was my experience. I often find myself feeling so thankful because I remember those days in the first 6-10 months where I was just laid out. Unable to function in life. Convinced that my social life was over. That I would never feel 100% again. Because it was lasting *so long*.Longer than any bug, or flu I had had in the past.I'm so thankful that all of that is behind me. Maybe its something I can reassure others of when they come here.That its "Something most BFSers get in the first several months, ride it out, its only temporary"Is that advice we can give to people?Thanks for any input.-BFSB-
 
After 3+ years dealing with this stuff I think I qualify to answer this. MY answer - Yes, Yes, Yes!!!I felt everything from cramping, twitching, mouth issues, speech seemed off, felt like I couldn't talk or chew correctly, back pain, finger and toe dancing(twitching), muscle pain, big twitches, many twitches all over, tingling, numbness, clumsy, cold affected hands, felt like I couldn't walk right, felt like I couldn't stand right, balance off, brain fog, swallowing difficulty, burning tongue, MAJOR mouth and eating issues( have resolved),tight forearms, calves, hands, shoulders, neck, fatigue, felt like I needed to sleep very day, every few hours. Muscle fatigue with minimal exercise or muscle use, cold spells, hot spells, dis-coordination, The list goes on and on.In case your wondering if I got checked out at all. Well, within the first 2 years I had 4 emg's, 3 MRI's, every blood test known to man( maybe not that much but I'm sure they took at least a gallon out). I had a full rheumatological work up, neurological work up, cardiac work up, immunological work up, metabolic work up, thyroid work up, Lyme, fungus, heavy metal, etc… I had maybe 4 different neuros, I also stuck with the best diagnostic neuro in our city for 1.5 years. I was monitored by neuro, rheumatologist, immunologist for a full year after I was told I was fine by all of my doctors. I'm also a paramedic so I have a pretty strong base of physiological and body process knowledge( this worked against me)I know your symptoms seem real and hell, they are definitely there but the reality is that after a full investigation by a doctor and especially a specialist resulting in a disinterested doctor means that whatever you have is a 99% guarantee to be from stress and anxiety. Stress and anxiety is a common thread with almost all of us on here and it's really probably the only thing that could cause such a wide variety of symptoms that would perplex the docs. Some will get *beep* that I said that but Just read through the forum posts and tell me you don't see it.Your wondering " could this really be from anxiety and stress" and your doctors are wondering " what in the heck else but anxiety and stress could cause all these issues".I hope that helps"Gods loves you and his plans for you are good" Have an awesome and hopeful day
 
I can remember a few weeks where I would wake up in the morning and be glued to the bed with fatigue. I could hardly lift my head off the pillow til about 11am. During the day I had trouble climbing stairs and would lose my breath easily. This is when I was thinking thyroid issues. Somewhere during that time I developed flu like symptoms for 2 days with terrible body aches, crazy fluctuating temp... went up to 103 down to 95 the next morning and back up to 102. Had terrible night sweats in which I'd wake up feeling like I was dropped in ice water. But it was gone just as quickly as it came. Mark
 
Well one thing is for sure, we have experienced something very, very strange.Totally breaks all the rules of known medicine.Severe, even obvious visual symptoms, without a single abnormal test result.Which is why doctors probably feel justified to tell us that we're making it all up.Though they never should say such things.
 
1) Did you deal with generalized fatigue that made you feel as if you had zero energy and/or a flu during the first several months?- Yes, I definitely did over the first few months and I can tell you this is very common with many over the years (you probably already know that). I wouldn't say my fatigue was severe like flu (when my bones ache), but I certainly felt like zero energy, tired, sore and would feel muscle burn prematurely doing routine activities (ie: hold a coffee mug). 2) Did this fatigue last several weeks and months, sometimes coming and going in bouts?-Mine lasted a couple months I believe, and definitely came/went. As time passed it improved so the "went" become more common until it disappeared. 3) Has this fatigue completely stopped now that you're past the 1 year mark, though you continue to twitch and maybe have other symptoms? Has the fatigue completely gone, never to return?-The fatigue never returned for me and I have felt 100% for years and years. In my experience (and many, but not all, other long term vets), this fatigue was one of the crazy, unexplained symptoms that comes with BFS. I believe it stems from our minds. I wouldn't say it is "just anxiety", but I believe many of my symptoms, although 100% real, were a direct result from my mind. Once I got past my fears and accepted the truth that I was "okay", many of these types of symptoms improved and disappeared. I don't believe its a coincidence that those BFSers I see struggle the most/longest with symptoms tend to exhibit the most severe anxiety and fears of "something else" (ie: ALS) that linger in the background. Good questions and you can probably find some old threads that might include solid feedback from old timers. You probably searched already and I expect the best threads are buried behind a thousand threads that mention "fatigue", which has been a popular subject over the years.
 
I feel more fatigued now than I did over two years ago when this started for me. Not sure if my two year status makes me a vet or not (guessing that it does). But, I have also cut out caffeine, so that doesn't help at all. I have to take a short power-nap (20 mins) every day to keep myself going for the rest of the day. I just have such a hard time getting out of bed due to the horribly drained feeling I have every morning (or after a nap) - regardless of how much I sleep. I have had sleep issues my whole life, and I'm pretty convinced, like Fibromyalgia patients, that I don't get enough restorative sleep. I seem to spend most of my time in REM sleep, dreaming.
 
Just to add to this... during my period of abnormal fatigue, I was also in the midst of a severe bout of dysphagia which had me struggling to stay above starvation levels. Then again, my activity level was pretty low as well. I was normal again by early this past summer (still twitching but mainly in my legs) and tried taking rhodiola which shot my energy levels through the roof.
 

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