Poisoned Feeling

I’ve started getting more and more this “poisoned feeling”. It seems to often coincide with PEM; and come up during sleep. And it’s just an absolutely awful feeling. My least favourite of the entire illness.

It sort of feels like a mix between an allergic reaction and food poisoning.

Anyone found ways to calm it down a little?

 

All I can say is that I have lived with this poisoned feeling since January 2011. Until I joined the ME-community I never met anyone who understood what I meant when I said I felt ”poisoned”.

In my case that feeling was constant for the first 13 years or so, now I have hours /moments/rare days when it disappears. During PEM it is … atrocious, I honestly feel like I’m dying. It’s unlike anything else. Sadly, during the past couple of years, I get anxiety from this feeling. It is overwhelming.

The only thing that has helped me lower the poisoned feeling is rest and LDN. I am very sensitive to meds, I can only take 0,4 mg LDN. I’ve been experimenting up and down with LDN many, many times, trying to find my sweet spot. I also gave up LDN twice or thrice (don’t remember exactly, I’ve been fiddling with it for years), and each time I noticed stronger poisoned feeling and longer/deeper PEM.

 

I sometimes feel as though something is missing, that there is a lack of something causing aspects of my ME but other times I also feel as there is something there that shouldn’t be (ie feeling poisoned).

It is hard to know how these subjective feelings relate to a physiological reality if at all..

In terms of an absence of something sometimes I feel I need to eat something but don’t know what. This is not the quite the same as being hungry as I can have this nebulous craving even whilst feeling full, though often something sugar based may help. But also at times I experience a sense of emptiness, mainly in my limbs but at times more widespread. Generally this is a sense of discomfort but at its worse it becomes painful.

In terms of feeling poisoned, at times I associate this with the sense of nausea that can come with PEM which I hate most when coupled with feeling hungry at the same time. I sometimes also wonder if at times the feeling of being poisoned is related to an as yet unidentified food intolerances. Most generally I associate this idea with the general malaise aspect of PEM where it feels that there is something in my system that shouldn't be there.

 

It's a horrid feeling. When in a bad crash it feels as if all the cogs in the body are shunting together - and not in a good way. No idea what it is but its as if the biochemical energy process just isn't working and pushing out goo

 

I've only had it for a few periods, but I agree it's the worst. It feels as if there's a pollutant or something that you need to flush out, but it doesn't go away.

We've had discussions about it in the past if you're interested having a look for them, @Yann04.

Meantime, you have my sympathy. It's horrible, and anyone who hasn't experienced it won't be able to imagine it.

 

I experienced the poisoned feeling in my very severe years (2 years) mostly every day. It was horrible. It felt like there was a buzzing vibration with it. Nausea, funny taste in the mouth. Not feeling like eating. I lost a stone in weight.

It did ease and become not as severe as the years passed (10-15 years). It was back in 2001 when I was very severe, so a long time ago. My memory is starting to fade with all the symptoms I experienced. It was all very traumatic and in a way I am glad I am starting to forget some things. But one thing I will never forget is that I never want to experience all the years of severe again.

I never knew what to do to treat symptoms. Just the painkillers for headache, I can't remember what else I did.

 

That pretty much sums up my life. Maybe check with your Dr that your liver and kidney is not affected. Sometimes this poisoned feeling can come from serotinergic drugs if you are on them. This was worsening the situation with me years ago. The sleep disturbance was the worst for me in a partial awake state feeling sort of poisoned or infective and I could not move. When really bad sometimes low dose tramadol helped a little. My sympathies.

 

They only recently discovered the brain's drainage system, a bunch of tubes that has been labelled the glymphatic system. Its function correlates with cerebral blood flow. If we don't get enough blood into the brain, we can't get the rubbish out of there. Cerebral blood flow is very much compromised in patients with POTS which includes many people with ME/CFS.

I wonder if the poisoned feeling might literally be a build up of molecules and metabolites in the brain that are not meant to be there.

The glymphatic system is supposed to mostly work at night. I wonder if its failure might be why we have "unrefreshing sleep".

Because this system is only newly discovered it has not been studied much. I'm always attracted to ideas that haven't been studied much yet because I feel that if our problem was in well-understood domains it might have been understood sooner.

Just a hypothesis!


The glymphatic system
Hashmat Ghanizada 1 , Maiken Nedergaard 2
Affiliations

• PMID: 40122623
• DOI: 10.1016/B978-0-443-19104-6.00006-1

Abstract
The glymphatic system, a brain-wide network-supporting cerebrospinal fluid (CSF) and interstitial fluid (ISF) exchange, is essential for removing metabolic waste from the brain. This system's proper functioning is crucial for maintaining neural health and preventing the accumulation of harmful substances that can lead to neurodegenerative diseases. This chapter explores the glymphatic system's mechanisms, its dysfunction in various neurologic disorders, and potential therapeutic strategies. Recent discoveries reveal the glymphatic system's involvement in aging, sleep, cerebral edema, and conditions, such as Alzheimer, Parkinson, Huntington diseases, amyotrophic lateral sclerosis, small vessel disease, hydrocephalus, migraine, stroke, traumatic brain injury, and psychiatric disorders, where impaired waste clearance contributes to disease pathogenesis. Moreover, therapeutic interventions targeting glymphatic dysfunction present promising avenues for mitigating the effects of neurodegenerative diseases. The chapter underscores the potential of integrating glymphatic research into broader clinical practices, offering new strategies for disease management and prevention.

 

Research at Harvard a few years ago found that sleep was essential for "brain detox". I wonder is some of the effect of some antidepressants is due to sleep enhancement and also whether side effects at outset may involve be some form of nerve "detox". Same with GABA ergics.

 

I get a ghastly poisoned feeling when I try to sit up which I have to briefly every day to put a bra on I know of no treatment. I guess it's for me it feels like a toxic or stress response of cells when they're very unhappy. It feels like something is being released into the system but could be a lack of enough of something too?.

 

Do you mean what others call a mast cell reaction?
Does it occur after eating or certain activities?

 

I think that’s what I’ve previously called it. But I’ve tracked a lot and it doesn’t seem to have any relation to eating or eating histamine rich food, which a lot of people say it does for them. I’m still unsure if antihistamines or mast cell stabilisers help, I want to do an RCT on myself but really dont have the energy to set that up.

So until that I’m just going to assume it’s part of ME, and not assume a mechanism, although it does seem to be more common when overexerting, thus the hunch of it being linked to PEM.

 

Had this feeling last night and this morning, first time in a couple months. Absolutely unbearable.

 

I don't know if this is relevant, but I've experienced something similar to what you're descrining in two separate incidents that actually involved low levels of carbon monoxide (CO). I felt violent nausea, dizziness/vertigo, diarrhea, and headaches.

I think I'm some sort of canary in the coal mine for CO--both cases involved a tiny leak (once from an incorrectly capped pipe in the kitchen after my family's gas stove was removed, another from a gas stove knob that wasn't completely in the 'off' position). In both cases, the amount wasn't enough to trigger the CO alarms and I was the only one in the house with symptoms.

In the first instance, I had been feeling absolutely awful for several days after we got a new electric stove. My mom happened to schedule an inspection from the gas company since we were also planning some upgrades to the old boiler system at the same time. I didn't even know they came by--my room was upstairs on the other side of the house and I was sleeping most of the day because I felt so awful.

Apparently the inspector found a just-barely-detectable amount of CO coming from that capped pipe in the kitchen and they replaced it with a new cap. By the time I woke up a couple hours later, I felt a million times better. I went to go talk to my mom and that's when she told me what happened with the inspector.

Thankfully I had the windows open the whole time while I was feeling awful. I realized very quickly that I felt much better when there was a breeze in the room, though I was so out of it I didn't put 2 + 2 together as to why that might be. I assumed it was just another issue of temperature sensitivity.

The second time it happened (in a different house a few years later), I started feeling awful after dinner and assumed I got food poisoning. I noticed that I actually felt less dizzy when I was sitting on the toilet, which was right next to an open window. This time I realized what might be happening so I forced myself to crawl into the kitchen where I found the knob slightly turned. Threw open all the windows in the kitchen and immediately felt better.

 

In your case, it's probably not carbon monoxide directly. But carbon monoxide poisoning is thought to affect people through two mechanisms: interfering with distribution of oxygen via hemoglobin and inhibiting one part of the electron transport chain for generating ATP. (Interestingly, cyanide also works by shutting down the electron transport chain).

My pet theory was that one or both of those mechanisms might be slightly impaired in my ME/CFS, so it required much less CO for me to start getting symptoms compared to others. But if you're having another issue that interferes with the same downstream mechanisms (and it gets worse with PEM), it might result in similar symptoms without actual carbon monoxide exposure.

 

Interesting experience. I wonder how different it would feel it I could feel both.

We don’t have gas in our building, heating and stoves are electric, so I don’t think it’s the case here.

 

Yes probably not CO, but other things can affect the same things that CO affects.

are you symptoms similar to mine (extreme nausea, dizziness, etc.)? I’m not sure if I’m interpreting “poisoned” correctly.

 

It feels like there is poison in your blood and every cell of the body. It is unbearable. Unbearable at very severe ME for me.

 

Has anyone who experienced this poisoned feeling gotten relief from IV saline?

I know it would be hard to access especially when feeling so horrible, so not sure what the chances are that someone has already tried it.

Just asking because it is sounding similar to what an acquaintance described when she ended up having lactic acidosis from other health issues.

not saying that’s what anybody is experiencing or that those treatments will help—I’m not a medical professional. But it might fit the picture for very severe pwME if there’s any merit to cellular metabolism dysfunction in ME/CFS.