• 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.

    To become a member, simply click the Register button at the top right.

Need help-Dysautonomia and fatigue

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Can anyone tell me, does Dysautonomia cause severe fatigue? I slept from 3 am last night until 4 pm today. I would get up, get breakfast and go back to bed. I am exhausted, dizzy, can't stand for long. I am weak. Does anyone else know if Dysautonomia can do this?

I see a neurologist tomorrow. I am scared as after 30 years of having what is CFS, I have never had this. It's a fatigue that I can't even describe and it's more like severe inability to be "up." as in sitting up, etc.

I have POTS so I know that is part of it, but I was not diagnosed by TTT. I was diagnosed by just standing up and sitting down and due to the fact that my BP is 90/54 and sometimes lower.

I am just crushingly exhausted and all I want to do is sleep. My MCAS is severe at the moment also.
 

Cort

Phoenix Rising Founder
Can anyone tell me, does Dysautonomia cause severe fatigue? I slept from 3 am last night until 4 pm today. I would get up, get breakfast and go back to bed. I am exhausted, dizzy, can't stand for long. I am weak. Does anyone else know if Dysautonomia can do this?

I see a neurologist tomorrow. I am scared as after 30 years of having what is CFS, I have never had this. It's a fatigue that I can't even describe and it's more like severe inability to be "up." as in sitting up, etc.

I have POTS so I know that is part of it, but I was not diagnosed by TTT. I was diagnosed by just standing up and sitting down and due to the fact that my BP is 90/54 and sometimes lower.

I am just crushingly exhausted and all I want to do is sleep. My MCAS is severe at the moment also.

Absolutely it can cause severe fatigue. I don't know that it's the cause of your new fatigue but the autonomic nervous system can affect many things. Of course dizziness is common - that's probably the POTS cutting in.

The immune system can cause enormous fatigue as well. Problems in the brain as well.

Good luck with the neurologist - please report back.

https://clinicalposters.com/blogs/health/dysautonomia-not-laziness

Dysautonomia Can Affect Digestive, Skeletal, Respiratory and Cardiovascular Systems
SOMETHING IS OBVIOUSLY WRONG. You know you’re sick but family, friends and perhaps even physicians disagree. Your eyes may be dry; vision is blurred. You have headaches, dizziness (vertigo), fatigue, excessive thirst (polydipsia), intestinal issues (reflux, nausea, constipation, diarrhea), slow or rapid heartbeat (tachycardia), excessive sweating (hyperhidrosis), perspiration depletion (anhidrosis), nerve pain or numbness (paresthesia or neuropathy), and joint pain (arthralgia or myalgia).

So why might a physician fail to put the debilitating symptoms together and diagnose dysautonomia?
 

Sing

Senior Member
Messages
1,782
Location
New England
I have a lot of dysautonomic problems with ME, but as they have worsened, my fatigue level has not. My fatigue level is no more than it was at the beginning of this illness decades ago when I had no hypotension at all, for instance. However, if I am in a crash due to P.E.M. or going into or fighting a viral infection, I will definitely be much more fatigued. What you describe sounds like a “flare” or a “crash”, but those terms are general. I think you are smart to try to get this checked out and hope you can get some answers. I am also interested in what you learn!
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
If you're still experiencing this, I'd suggest getting your iron level checked. Or just start taking iron (a highly absorbable kind). This sounds exactly like what happens to me when I start getting low on iron. Iron deficiency is common, but especially wreaks havoc for me because of ME. Climbing stairs, even standing up from sitting makes my thigh muscles burn so intensely that I can hardly stand it, I get cold sweats, I get more air-hunger than usual, get shaky and feel like I'm going to pass out when standing (more so than usual, I mean, lol).

Hope you're doing better.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I have a lot of dysautonomic problems with ME

Hi @Sing

Just a quick note: I recently discovered that wearing a compression belt around my waist helps considerably with my dysautonomia. I also recently started wearing compression socks, and the two of them combined have probably lessened my symptoms by around 50% or so. -- Hope you're doing well... :)
 

Sing

Senior Member
Messages
1,782
Location
New England
Hi @Sing

Just a quick note: I recently discovered that wearing a compression belt around my waist helps considerably with my dysautonomia. I also recently started wearing compression socks, and the two of them combined have probably lessened my symptoms by around 50% or so. -- Hope you're doing well... :)

Thanks for the note @Wayne ! have noticed too that a compression belt can help, as well as the socks, but I can’t wear them more than say an hour for the belt and two for the socks. My body reacts with a muscle spasm if I were the belt too long. I guess I am contracting something whiile I wear it, because my abdominal muscles do this if I do repetitive contractions for any reason (no abdominal exercise as a result). As for the socks, my sensitivity to the type of fabric gradually kicks in and gets the aching going in my lower legs. I have small fiber neuropathy so this aching response is either part of that or some part of a central sensitization because I get this increasing aching if I were most kinds of fabrics, earrings, elastic in underwear—anything irritating to the nerves on my skin.