Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I get this too and find it unnerving when out. At home I have the bed nearby but when I am out I have a regular line of thought going on as in this, "I hope I make it" " I hope I make it home" "I hope I can get across this road alright". To every one passing by me I probably look just fine. I do take the trolley with me a lot now and find it good for leaning on slightly for balance.Does anyone else get a swaying feeling like if you had been on a boat? I seem to notice it more when i am sitting still.
How are you in shopping malls? I feel instantly off balance the moment I enter one. I have huge problems with large buildings with high ceilings. There is something about that whole space that has a huge affect on me.Not so much when I'm still, I feel like I list or weave when I'm walking outside and have a large visual field. I also have a really hard time when driving and hitting bumps and my head bobbing up and down or around, so its weird whether it is originating from within me in response to negotiating the environment or as a result of the movement related to being in motion... It makes driving especially overwhelming, setting off a sympathetic reaction and really adding to my experience of fatigue... I too have wondered if its vestibular and am thinking of checking that out but it really feels autonomically related as in, neurologically struggling to process sensory stimuli and motor coordination. Anyone else have this?