I have been thinking lately that when I am telling my Drs, physio etc that I have fatigue that they are interpreting this as “Sleepiness” and realising I maybe need a new word or phrase to properly convey what I mean. As the conversation then goes to my quality of sleep, which is 98% currently (tracked with WHOOP device and apple watch on the other wrist)
When I say fatigue I mean whole body, not sleepy, my limbs, torso, my mind are all tired and energy spent. Is this how you would describe the fatigue you feel? Do you explain it in a better way than I can? Perhaps closer to muscle fatigue after a marathon??
Fatigue is also a core reason my GP is “98% sure I also have chronic fatigue” (ME) and by years end will pursue getting a formal diagnosis. I do fit All of the symptoms listed for this but also the fatigue is the majority of it and wondering if my Fatigue is experienced differently?
For context I am 18 months post FND diagnosis, sudden onset with viral infection, most of my progress I made was 6months-14months post. I seem to be stuck with about 4good hours per day.
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Zozo87
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Hi Zozo87, I experience extreme fatigue too, not all the time but I have some very bad days. Usually my fatigue comes with headache (sometimes so bad that I can't function), so I take crazy amount of painkillers, and it makes me think that medication is causing fatigue, but it gets to the level where I am dragging my feet, lifting my arm is an effort, I am talking slowly and calmy... I wake up next day and its improved and I am still on the same dose of medication, so makes me confused. Do you experience something alongside fatigue, like pain or weakness in limbs? Maybe explaining DRs how you feel in depth would help
Hi, I to have FND affects walking , talking and thinking. I have had 2 GP's tell me its possible ME and one sent me for tests with MCATTS physio for assessment unfortunately the person I saw was" you don't want another label" so she just gave me exercises to do (physically I cannot do them) and that was it. I always describe it as my body is tired not sleepy, I can sleep for up to 30 hours at a time and still feel tired. here in England its hit and miss, my FND took 18 months to get a diagnosis and that was down to the neuro-physio. She wrote on her notes to the neurologist that she thought I had FND and the neurologist agreed. but the diagnosis for ME is still on going , still sleeping long hours (average 12-16hrs) , aches and pain whole body. so here its a case of finding the right person to a. give a diagnosis b. help and treatment. good luck in the future . kevin
I have the same problem when I mention fatigue immediately the doctor goes to sleep issues…. They can’t help themselves it’s easier to blame sleep then deal with your issue.
Yes I have CFS and know all about fatigue. I sleep for 8-10 hours with very little deep sleep (mostly REM and light, so barely asleep), so sleep efficiency is very poor. You need a full PSG / Polysomnagram test to establish what sleep phases you go through. Most sleep monitor watches or Apps assume a standard ratio of sleep phases, so knowing how long you are asleep tells you little. I don’t recognise the tester you mentioned, but if it’s only movement and not EEG, you will never know. MSLT is also useful test.
Also worth bearing in mind that if you don’t reach deep sleep phase, you won’t enter the muscle paralysis state, which naturally relaxes all of your bodies muscles overnight ready for a new day - Hence you should feel rested and relaxed when you wake up. If not, we are on the same journey.
I saw a new neurologist earlier this week and said one of my symptoms to whatever is wrong with me is brain fog her response was "what you call brain fog might not be what I call brain fog, so I don't know what you really mean" - I think sometimes doctors are just being difficult for difficults sake!!
Being a fellow FND warrior, think I understand you when you use the word “fatigue”. However, I have found that docs don’t. I describe “fatigue” as “my life’s juices leaving me.” Alternately, as a person bleeding out and progressively losing functions of the mind and body. It seems that one of those two phrases helps with understanding.
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