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ME/CFS and dysautonomia

Messages
79
Is it possible to have ME/CFS without dysautonomia? There are people with ME without orthostatic intolerance, does it mean that ME isn’t autonomic dysfunction?
Maybe people who have ME and dysautonomia have two different diseases?
It’s possible to have fatigue/rapid muscle fatiguability without PEM, but energy levels can be pretty normal, so I’m confused.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Is it possible to have ME/CFS without dysautonomia?

Since the diagnostic criteria do not require the presence of dysautonomia, it could be possible:

ME/CFS: Diagnostic Criteria
https://forums.phoenixrising.me/threads/me-cfs-diagnostic-criteria.86943/

However, note that there is a whole lot more to dysautonomia than just orthostatic intolerance. From aerobic exercise intolerance to vision problems to irritable bowel syndrome, there are many other different types of dysautonomia:

What Exactly is Dysautonomia?
https://forums.phoenixrising.me/threads/what-exactly-is-dysautonomia.86647/
 

Rufous McKinney

Senior Member
Messages
13,251
It’s possible to have fatigue/rapid muscle fatiguability without PEM, but energy levels can be pretty normal, so I’m confused.

I think its possible...or in mild and earlier stages, these types of aspects can be far less intense.

I was mild for 40 years and those types of symptoms were not intense for me at that time.

Now they are quite intense. Im considerably worse, four years ago probably picked up Virus #2.
 

Rufous McKinney

Senior Member
Messages
13,251
I guess I never knew anyone with ME who did not have orthostatic intolerance of one form or another.

I decided I had "impossible" (the doctors said) recurrent mononucleosis. So then I"d experience sort of collapses.

If I get sick, I get worse sick than other people so that occurred. It always felt very lymphatic.

I'd have no energy after I cooked the Turkey, but I cooked the turkey,

CFS was not something I assigned to myself, I decided this eppstein barr just lives in me and must reactivate.

It was around 2010 (after 40 years) I decided I must have this more FANCY named thing, And then it all got alot worse and then it got REALLY BAD over six months..

So I had a severe worsening over sick months which is really odd.
 

Rufous McKinney

Senior Member
Messages
13,251
This was posted earlier today by Bateman Horn Center......

I need to figure this out. I am now assigned: FIGURE THIS OUT.

Anxiety & PTSD in PASC and ME/CFS

August 23, 2022 Bateman Horne Center has partnered with the University of Utah Health to conduct a Long COVID and Post-Viral Syndromes ECHO (Project ECHO).

This series delivers information to healthcare professionals utilizing short didactics and case-based learning to enhance their ability to manage patients with long COVID, ME/CFS, FM, and related comorbid conditions. *It is important to note, that this presentation focuses on how dysautonomia and sympathetic overdrive can present like anxiety and/or post-traumatic stress disorder.

This does not rule out the existence of anxiety and PTSD, but rather informs on how these conditions can co-occur or be misdiagnosed. The patient is strongly encouraged to work closely with their care team to determine the best course of action for their patient-specific needs.* Brayden Yellman, MD, addresses anxiety and PTSD in those with PASC: - Prevalence rates - Systemic review of symptoms in those diagnosed with long COVID - Understanding how COVID-19 could cause dysautonomia - Reducing sympathetic nervous system signaling - Approach to care and treatment - Understanding how sympathetic overdrive impacts sleep

 

Rufous McKinney

Senior Member
Messages
13,251
I got to around 12 minutes.......wonder if I will ever make it to: some recommendation for feeling better.

I have experienced agoraphobia for around twenty years, started in pre menopause when the restorative sleep was taken.....it seemed.

I don't have panic attacks hardly ever.

I feel its strongly tied to being this sick. Then, expected to function in a normal world when in fact your too sick to do so, generates tremendous internal state I would describe more as:

Dread
Deep Trepidation
Unsettled, deeply.

and it starts up days before the actual REASON I have to go do something and I am too sick to go do it.
BEFORE...anticpating and dreading. There is the DREAD.

Then the PTSD arises- because I can no longer rely upon my body to come through for me. My body has at times betrayed me.

Thats very real. My dental consultation the required reviewing ALL THIS ILLNESS (as it affects my mouth and teeth)....in a two hour appointment led BODY SHUT DOWN ENTIRELY (vomiting every twenty minutes for days and days). Sixty days to recover.

And somebody expects me to get in an airplane and fly to a foreign country?