Gut Symptoms As Part Of PEM

[Machair]

Does anyone find that during PEM they experience gut symptoms- If so what do you notice the most and how do you treat it?
I have had ME for 27 years and have found it to be the case that during crashes my gut really gets irritated, constipation diarrhoea and wind bloating and stomach pain all occur and seem to go hand in hand with everything else.

 

[hapl808]

Yep, all of the above. Around 27 years here as well coincidentally, and I've noticed that acid reflux is one of my first indications of a crash. Besides that, just general digestion problems like you said - doesn't matter if the crash is precipitated by cognitive exertion or physical exertion. Same guy symptoms.

Some things like slippery elm or marshmallow can slightly improve symptoms, but I've found nothing at all that helps stop them.

 

[Nord Wolf]

During PEM I too have the gut crashes. Constipation, bloating, abdominal cramping, lowered appetite, and spleen energy crashes. Nothing I’ve tried helps. The only thing that reverses it is recovery from PEM. It is rather new for me within the past 2 years. I’ve had M.E., dysautonomia/PoTS for about 16 years and the digestive piece with PEM just started a couple years ago, but much more pronounced in the past year.

 

[sunshine44]

Thank you guys for sharing your stories. I’m in a very severe crash and my gut is mostly completely paralyzing? Or shutting down since covid. I’ve had a lot of crazy stuff but this is next level not being able to eat but bites and drink much. I have no thirst today. And difficulty drinking much yet ivs aren’t going great atm either.

Nothing I’m doing is helping.
It seems to be pem related.

I started recovering but home health ordered iv saline treatments and it seems that although I’ve had 7 bags in 4 weeks in hospital, now by body is rejecting them with violent crashes. 170 hr many times since yesterday. Liquid poop keeps coming out yet I have no energy to keep tending to this. Especially overnight. Trying to rest. Hard to do when like this and wait this out. Dr thinks maybe last 2 bags were run way too quickly. This new service has run them faster than I’ve ever seen. Apparently this can be an issue with dysautonomia and I certainly didn’t know. Nurse didn’t either! Ugh.

This is such a brutal freaking illness. Such a bizarre illness.

 

[Rufous McKinney]

This is such a brutal freaking illness. Such a bizarre illness.

My stomach is shut down this Am. I don't seem to get heartburn for which I am so grateful.

This hasn't happened quite like this ever before, causing me to feel extremely anxious which isn;t helping any of that.

Digestion going bad can CAUSE the PEM. Egg chicken chicken egg.

The wind is energetic, but I have lots of that. and recently it's quite obviously coming from the small intestine. Up real high.

Huge cramps up there right now. Bye

 

[sunshine44]

My stomach is shut down this Am. I don't seem to get heartburn for which I am so grateful.

This hasn't happened quite like this ever before, causing me to feel extremely anxious which isn;t helping any of that.

Digestion going bad can CAUSE the PEM. Egg chicken chicken egg.

The wind is energetic, but I have lots of that. and recently it's quite obviously coming from the small intestine. Up real high.

Huge cramps up there right now. Bye

I’m having all of the above plus sharp stabbing pains when I try to sit up on intestine and very painful cramping etc.

So sorry rufous.
Seems these viruses really got to us.

I’m quite agitated as well. Due to 170 hr so often and this gi shutdown. This….is not fun. I can relate so much.

Please hang in there 😩🙏
My dr and nurse said they really aren’t sure what’s happening to me rn. Comforting. But hey, at least I have medical care now.

 

[sunshine44]

Yep, all of the above. Around 27 years here as well coincidentally, and I've noticed that acid reflux is one of my first indications of a crash. Besides that, just general digestion problems like you said - doesn't matter if the crash is precipitated by cognitive exertion or physical exertion. Same guy symptoms.

Some things like slippery elm or marshmallow can slightly improve symptoms, but I've found nothing at all that helps stop them.

Serious Acid reflux for me as well is one of my first indicators. Like the kind that awakens me in middle of night choking on. Ugh. So sorry for all of us. Brutal brutal illness. I like marshmallow root too although like you littke relief for this pem gut stuff. Seems I just have to pull away from so much and let time do its thing.

Do you find any antihistamine supplements or meds assist? I have not for acute issues but wondering sometimes.

 

[hapl808]

Serious Acid reflux for me as well is one of my first indicators. Like the kind that awakens me in middle of night choking on. Ugh. So sorry for all of us. Brutal brutal illness. I like marshmallow root too although like you littke relief for this pem gut stuff. Seems I just have to pull away from so much and let time do its thing.

Do you find any antihistamine supplements or meds assist? I have not for acute issues but wondering sometimes.

Exactly the same. The acid reflux coughing and burning is my first indication that a crash is coming - before the rest of the symptoms arrive.

I have yet to find anything that really helps much. Tried: Allegra, Zyrtec, Claritin, Pepcid, cromolyn, quercetin, ketotifen, Pepto, mastic gum, vitamin C, reishi, AHCC, fenugreek, chlorella, probiotics, marshmallow root, aloe vera, slippery elm, allicin, andrographis, and so forth.

 

[sunshine44]

Exactly the same. The acid reflux coughing and burning is my first indication that a crash is coming - before the rest of the symptoms arrive.

I have yet to find anything that really helps much. Tried: Allegra, Zyrtec, Claritin, Pepcid, cromolyn, quercetin, ketotifen, Pepto, mastic gum, vitamin C, reishi, AHCC, fenugreek, chlorella, probiotics, marshmallow root, aloe vera, slippery elm, allicin, andrographis, and so forth.

Wow.

Yeah. I hear you SO much.

 

[Blazer95]

I found only one Thing to partially Stop my increased Heart rate and its sodium-cromoglicate (antihistamine didnt Work either)

For my Reflux and Heart burn i have to Take pantoprazole 20mg daily.

It works Not great but atleast IT does Work.

 

[kangaSue]

Thank you guys for sharing your stories. I’m in a very severe crash and my gut is mostly completely paralyzing? Or shutting down since covid. I’ve had a lot of crazy stuff but this is next level not being able to eat but bites and drink much. I have no thirst today. And difficulty drinking much yet ivs aren’t going great atm either.

I'm seeing a lot of new post-viral gastroparesis members in my Facebook gastroparesis groups whose onset of gastroparesis followed getting Covid-19 (so post-viral gastroparesis).

 

[sunshine44]

I'm seeing a lot of new post-viral gastroparesis members in my Facebook gastroparesis groups whose onset of gastroparesis followed getting Covid-19 (so post-viral gastroparesis).

This is unlike anything I’ve ever experienced.
I had bad gi stuff with covid in 2022 but this far surpasses. I believe it.