Thanks @Pyrrhus , i dont think it was causing but def making things harder to handle. I am still very concerned honestlyzc like terrified, but im certain its my body unable to exist without pem sort of thing like pysically, but i am now laying on a yoga matt on the floor and i hope this will improve things. I wonder if this signals eds or blood flow=better=surgery mogjt be good for me. I did the same when i was working at amazon. From hiking shoes to those skin shoes with improvement. We’ll see how it goes longer term but i think helping so far. Beds imperfect. Id sleep on floor if not for cdfs. You y need weeks of adjustment.
thanks for saying so friend, i am having a hard time atm, clearly heh. Hope it starts to turn around.
oh and i also ordered a little pool for float therapyzz. Hopefully my body can get into neurteal and healing soon.
@bensmith Sorry you're enduring this distress. ME/CFS can inflict some very distressing symptoms that many cannot even comprehend. I'm afraid I cannot offer any suggestions to relieve your vibration sensory, except to say you're not alone experiencing them. I've experienced these episodic inner tremors for a couple of years or more. I live in earthquake country, and I could not tell the difference between a M3 rumble and my tremors, until after a minute of it not passing that I realised it wasn't an earthquake!
It used to bother me because my ability to sense motion was very sensitive, I used to race cars and motorbikes and motion sensing it a critical skill to have to maintain control. I accept now this pastime is past-time, something I can only enjoy watching from the couch, so I don't let it bother me anymore.
I do suggest this symptom might be related to cranial instability, not necessarily CCI but related to connective tissue disorder that destabilizes the neck region. For me this tremor sensation began around the same time as my neck issues became more prominent and a few new symptoms emerged. That's my guess. Hang in there buddy.
As nearly as I understand your problem, the vibrations you're feeling are a not uncommon symptom, usually referred to as 'internal shaking', or sensation of internal tremors. They're generally related to forms of medications that screw with your brain, ie, anti-d's, anxiety drugs, and sometimes abx, as well as any number of recreational drugs.
They can indicate a a disregulated nervous system, or cortisol that's too high or too low, and sympathetic overdrive.
You might want to ask your Dr for a cortisol test to see if your values are out of whack.
@YippeeKi YOW !! pk ty. My doctor knows, ill see what she says. Why i think its related to physical pushing is because when i lay in a new position it goes away for a time, or if im asleep i tbink. But maybe
That is eelated to what you are saying. It woeeies me i feel like its pushing me down farther.
Hm i felt a bit better laying in the floor but getting back into bed and my mental is a lot lower. Cant talk much either. Hm. I am very scared! I am def getting worse. This is suxha. Terrible and sxary disease. I cant believe i maxe a mistake and could lose all functioning and die : (
i was doing a bit better earlier in the crash which scares me very miuch. I havent been conversation likited to this degree or light sensitive in months. Hope i get better soon.
i regret pushing very much in this moment. Its unreal how careless one can be. I knew how dangerous this disease was. I was brainwashed by recency bias.
i know i cant say dor sure but it feels like im declining intineither absolute hell or death ; (. I keep getting worse and cant stop im trying so hard.
if i get a third chance ill never mess up again i swear ; (
im worried its shaking from adrensiline. If i cant even lay in bed without a push then i wonder if thats how its keeping me going. And why i jeep sliding. Which is prob jot goofs
Is there something i need to do to prepare? My local doctor didnt even know what long covid was much less cfs. Dr levine was like you need to worm witj your local doctor to mamabd serios care but how do i do that? I literally cant cut anutbing else out. I lay down and rest all day drink eat pee poop. I get on phome some but i dont think thats the make oe break pount. Maybe 10 mins a say or 20 to talk to yall thats it right now. Its like my nody needs to be in space.
like i think this is out of my control now : /. I dont know what else to do if i cant rest to pull up.
walls are closing in fast, within days i think!
the weirdest paet is that the crash didnt seem that serious at first, def way less intense than my furst crash into severe/cfs.
Try to hang on however you can til we all figure it out for you
I dont yet know your whole history. But so far, given how acute your symptoms are:
If you think from covid, can yku ask for plamophoresis? That will bring quick relief if its from
Your own sntibodies attacking itself (secondary to covid). My understsnding is this has been done igG woukd be slower
Second big thing, if you think from
Accident involving neck, could you have a cfs leak? Can you present at Er and ask them to test?
I have smaller suggestions but you are in no position to do small things right now.
(Do you have one advocate you trust to be a go between)
Another that helps me with the fits and hallucinations is alcohol. I’m assuming you poss can’t handle it but if you can it’s the only thing that’s got me through the sleep stuff and into a 4 hour sleep this evening
A beer: has really helped me in the past ...the hops. Beer has a rather nice calming effect- not get drunk (altho since I dont drink beer often, I'm thinking about one I enjoyed while in the throws of anxiety- ..I certainly was slightly light headed in that This Feels Good way.)
We had rented a lovely room at a really nice hotel near Yosemite, and we got into the room and its next to the elevator and the wall is vibrating and I can hear this vibration and its entering my physical body and so I told my daughter: I can't stay in this room. We call the lobby. They seem to have no idea where another room might reside. Even tho they possess 100s of them.
Here is this giant beer I am to consume, and I'm really anxious right now- traveling, not home, exhausted, and i just don't tend to do well in that setting. I'm mad i have to nurse this beer and we don't have a room still.
(the large suite was changed to tiny room near another elevator, but no vibrating). so it was pretty close to similar to I took half a Xanax.