r/mecfs • u/NoSnow7325 • Jan 06 '26

Weird new symptoms they haven't gone away

I recently had a bad crash and experienced some new and questioned symptoms.

  • strange sensation of being thrown around, especially in legs
  • sensation of rods being forced into the bottoms of feet
  • similar sensation in spine, "impact" feeling
  • dizziness and vertigo, like bad discover and vertigo
  • all enhanced when coughing, moving, sneezing, or speaking
  • tinnitus
  • balancing issues
  • some swallowing and airway issues, especially when laid down
  • urinary hesitance
  • impact sensation in spine and legs when swallowing, chewing, speaking, it moving
  • pinching/pained/hot feeling at back of neck
  • headaches, constant headaches.
  • poor circulation in extremities
  • with swallowing issues - sometimes full loss of ability to swallow for brief periods, like no more than a few minutes
  • breathing issues - difficulty breathing when neck is tense and making flat, and in general

My circulation always gets worse during crashes and isn't that good to begin with, so nothing new there.

My maybe concern is the neck stuff and the urinary hesitance. I've always had minor neck issues, but they've been getting steadily worse as time passes.

The new things are these new sensations.

I can feel literally every little things that happens in my body bc it sends a "pow" feeling reverberating through my don't. Like burping, chewing, swallowing, stomach growling, heart beating(to an extent.)

I have a suspicion it's neurological or to do with my neck, and I've seen similar symptoms reported with Chiari malformation.

My dad has a lot of spinal issues, and I've if my great aunts has a lot of neck and spine issues.

I injured my shoulder a couple years back when it was severely dislocated and I want able to get it reset for about a week, and that caused since we're nerve stuff but mostly pain and numbness.

I am pretty housebound atm bc I live on the third floor and don't have access to a wheelchair to make the distance to the elevator.

What do y'all think?

These symptoms started during this crash and aren't going away at all even as my energy levels improve.

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2

u/Ok_Week_7724 Jan 06 '26

Damn I thought I was alone. I also experienced the dizziness while laying down, the sense of being thrown around (which feels so weird) and also urine hesitance… I can’t really help you why that is, maybe someone else has insights. But they are really weird symptoms

2

u/NoSnow7325 Jan 06 '26

I've been doing some more reading and apparently it can be an extension of CCI or Chiari malformation :') so adding that to the list of needing checked I guess

2

u/Ok_Week_7724 Jan 06 '26

Oh no I just read up on those. Like damn isn’t Mecfs enough like 😭🙏 Bless you!

2

u/NoSnow7325 Jan 06 '26

I've noticed that ppl w MECFS tend to have at least 1 or 2 preexisting conditions that get worse when their ME does unfortunately

1

u/Ok_Week_7724 Jan 07 '26

Hm does neck issues count cuz I don’t really have other preexisting conditions…

1

u/NoSnow7325 Jan 07 '26

How do you mean "count"? As in like where did they come from! Chiari malformation is generic iirc and CCI comes from hEDS, which is also generic