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    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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Messages
81
Location
Indiana, US
So I had an allergic reaction back in February and then had this awful, god awful, feeling. It was not PEM, but what essentially was happening was I would almost get these like adrenal rushes from my stomach. And it would cause me to feel super hyper, like I would be talking super fast and everything and just generally frantic. Also this very uncomfortable gut feeling would come in waves and also trigger facial flushing with it. The bad gut feeling came and went rapidly all day, waxing and wanning, but it ALWAYS got worse after I ate or drank anything, sometimes I would immediately feel it after eating. After 10 days it fully went away thank God. I just got over the flu now (whole house had it, not PEM) and now it's coming back a bit. It kinda comes and goes infrequently though, some days I get none, others a few times in the morning, etc. It's very very uncomfortable, one of the worst feelings I have ever felt, it's like imagine the butterfly feeling when you see someone looking at you with a knife in the dark. It's like that but 5x as worse and can happen randomly and even rapidly back to back. It's extremely unsettling and makes life hell on top of another hell.

Has anyone found anything to help this symptom or know what's going on? It feels like it's autonomic, I do not know if it's dopamine problems or what, but I do want it to stop.

Also, just before this happened, changes in my digestion slowly happened. My stool always used to be a type 3 or 4 with minimal gut problems. Eventually it got a bit lighter over time, but now I only poop like once a week and it's dark green. I'm seeing a GI doctor soon about this. Additionally neuropathy which seems to be non length dependent has also appeared a bit before this new symptom. That's for another thread though.
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I used to have INTENSE feelings like that. They happened intermittently.............I have no idea what the cause was or I didn't notice if something triggered it. The sensation was so intense and uncomfortable it just felt like any minute my body would explode. After the episode was over, my body would be so exhausted from the rush that I would immediately fall asleep.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
It would probably be difficult to figure out the cause of that. ME seems to affect brain cells differently in different parts of the brain in different individuals. In your case, it might be affecting connections in whichever part of your brain involved in those feelings. It could be affecting hormone levels. It could be affecting gut function, which in turn feeds back to the brain.

If it were my problem, I'd try to pay attention to any factors that affect the symptoms, and use that to minimize the problems, even without knowing why it works. I've accidentally discovered several treatments that worked well for me, but I still don't know why/how they worked.
 
Messages
81
Location
Indiana, US
It would probably be difficult to figure out the cause of that. ME seems to affect brain cells differently in different parts of the brain in different individuals. In your case, it might be affecting connections in whichever part of your brain involved in those feelings. It could be affecting hormone levels. It could be affecting gut function, which in turn feeds back to the brain.

If it were my problem, I'd try to pay attention to any factors that affect the symptoms, and use that to minimize the problems, even without knowing why it works. I've accidentally discovered several treatments that worked well for me, but I still don't know why/how they worked.


Well, quite unfortunately this happens in cycles and waves and I stick to an extremely strick schedule. Exertion doesn't cause it. Food doesn't cause it. It seems to be entirely random. So yes it is going to be hard to find that out. Unfortunately, I'm already bedridden, so this on top of bedridden is making me really want to just jump off a cliff (but I don't have energy to find a cliff or jump lol).
 
Messages
81
Location
Indiana, US
I used to have INTENSE feelings like that. They happened intermittently.............I have no idea what the cause was or I didn't notice if something triggered it. The sensation was so intense and uncomfortable it just felt like any minute my body would explode. After the episode was over, my body would be so exhausted from the rush that I would immediately fall asleep.

Its awful it feels like your gut is going to burst. They went away on it's own though? It sounds like? It seems to me like it's some sort of peripheral nerve dysfunction in the gut/brain. No idea what triggers it and doesn't though.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
It seems to be entirely random.

If it happens in cycles, it could be that a slight improvement changes your level of brain activity or autonomous body functions, which in turn triggers the ME mechanisms to make you feel worse again. Since you're limited in what you can do, you could experiment with different types of mental activity: meditation, puzzle solving, creation, etc. Maybe you can find a correlation with that.

Since gut abnormalities seem to be involved, your thoughts can affect gut function, and vice versa. Stressful thoughts may change digestive function differently than relaxing thoughts. These are possibilities to keep in mind when trying to see correlations.