• 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.

Auditing How You Feel

cmt12

Senior Member
Messages
166
In general, I have found that the solution to a problem becomes more clear as I gather more accurate data points that I can use to help make better decisions. I'm wondering if you guys feel this applies to this illness.

If you were to focus more on feeling how your body feels and noticing sensations or symptoms that you wouldn't have otherwise noticed, is that extra information useful enough in the long run to make up for the temporary annoyance of being more aware of an uncomfortable sensation?

I suspect everyone agrees that being completely disconnected from your body is not optimal since you won't be able to accurately assess any treatment options, right. But where does that optimal point of scanning your body and taking inventory reside? If you were to take more moments out of the day to audit how you're feeling, could that extra information increase your chances of making better decisions in the long run? If some is good, is more better?

When I attack a problem and am gathering as much data about that problem as possible, usually as I'm doing it I don't realize how that data will be useful later on. Could this be true of this illness as well? That feeling our bodies more often for symptoms may pay off later in ways we are unaware of in the present?

*Note that I'm not saying think about how we're feeling since this is one step removed -- and therefore less accurate -- than feeling how we are feeling.
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
In general, I have found that the solution to a problem becomes more clear as I gather more accurate data points that I can use to help make better decisions. I'm wondering if you guys feel this applies to this illness.

Yes. It's how I got to treat this disease. Gather as much bodily data as possible, logging even the silliest of things. Often it turned out there were connections I could not have phantomed just with just reasoning.
I'll give examples at the end.

There's a problem with constant monitoring and scanning the body. It's noticing everything and thinking everything means something. Too much focus breeds worries.

We may forget that the body has physical, mechanical routines and they come with scrapes and gurgles and discomfort which are normal. Especially digestion is such a process, for example. You're brushing twigs against your inner skin (intestine lining) after all...

So I'm with you: gather data but beware of attaching worry to everything.

Complexing factor: my body messes up my mind. Neurotransmitters make me very unhappy at times. I should not trust how I feel. When in these moods I should stay away from trying to interpretate date or trying to understand the ilness.

So: timing the interpretation of the data needs to be done wisely.
When the timing is not good all thougths about the ilness should be parked and abandoned. Focus should then be on the here and now and on something pleasurable.

Examples of weird data that turned out to be logical:
- food log showed vanilla-flavouring would result in severe life desperation a couple of hours later?? Explanation: vanilla receptors in the brain react bad to vanillin.
- after taking a shower I had to lie in bed for an hour, often without the strength to towel myself dry. Explanation: homeostatic intolerance for change in temperature plus standing upright, adrenal insufficiency.
- garlic is linked to 3 AM insomnia? Explanation: my MAO A doesn't break down noradrenaline (=norepinephrine), cells fill up with ammonia, smallest physical stress leads to surge in noradrenaline which sticks around for a long time.
- treating Zinc deficiency had me barking mad. Explanation: Copper Dump.
- one hour after eating I get so incredibly tired, I need to lie down. Explanation: that's when the stomach starts to release food bits into the duodenum for uptake. This takes a lot of energy and also requires the CNS modus known as Rest & Digest (opposite of Fight or Flight). Since I seldom reside in R & D naturally I need to lie down and relax to get effective digestion.
 
Messages
93
Location
UK
It's very useful to look at patterns over the long-term, for example I became convinced I had symptoms of salicylate sensitivity, but after a while it became apparent it was just a phase I was in, if I hadn't kept clear notes then I'd probably still think I had it now.

As for getting to hung up on body scanning, just acknowledge it, write it down immediately, then let it go. I use the notebook app on my phone and then put everything in my A4 diary. It helps if you can eat a similar routine of your safe foods for a while, then you rule out food as the culprit to some extent.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Complexing factor: my body messes up my mind. Neurotransmitters make me very unhappy at times. I should not trust how I feel.
Yet, I assume that it was noting how you felt at various time that made you aware of this.