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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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Take the poll: What are YOUR sensitivies?

What are YOUR ME/CFS and co-morbidity sensitivities?

  • starches (corn, tapioca, rice...)

    Votes: 10 20.4%
  • grains (rice, rye,wheat, barley...)

    Votes: 19 38.8%
  • processed sugars (white sugar, corn syrup, maltodextrin...)

    Votes: 21 42.9%
  • meat proteins (chicken, beef, pork...)

    Votes: 2 4.1%
  • fish or shellfish proteins

    Votes: 2 4.1%
  • eggs

    Votes: 4 8.2%
  • veggies

    Votes: 3 6.1%
  • fruits

    Votes: 6 12.2%
  • fragrances

    Votes: 21 42.9%
  • smoke

    Votes: 15 30.6%
  • mold & mildew

    Votes: 15 30.6%
  • dust & dustmites

    Votes: 14 28.6%
  • other environmental (light, sound, cedar chips, cat litter...)

    Votes: 24 49.0%
  • temperature extremes (hot or cold weather)

    Votes: 32 65.3%
  • any others?

    Votes: 11 22.4%
  • I don't have any triggers.

    Votes: 0 0.0%
  • I don't think I have any triggers, but then again, I might.

    Votes: 3 6.1%
  • I think I probably have triggers, but I haven't pin-pointed them yet.

    Votes: 5 10.2%

  • Total voters
    49

Booble

Senior Member
Messages
1,397
I don't think mine is food related except for foods causing migraine aura (silent migraines).

I'll go with:
molds
dust/dander
pre-storm weather
doing more physical activity than what my body is used to.
adrenaline rushes *


*This can be caused by both startling adrenaline -- being awoken from deep sleep, a loud unexpected noise or "good" adrenaline from a great call with a client.
 

Rufous McKinney

Senior Member
Messages
13,251
Have you found cinnamon and cloves

in chinese medicine, they are considered heating...and I"m already overheated (inflamed). Garlic is heating also. I always cook the garlic fully. I rarely eat uncooked vegetables.

My main point is folks in the east view these foods differently from westerners.
 

Rufous McKinney

Senior Member
Messages
13,251
*This can be caused by both startling adrenaline -- being awoken from deep sleep, a loud unexpected noise or "good" adrenaline from a great call with a clien

I"ve noticed around PR that alot of comments are made about "running on adrenaline". I sometimes wonder what this actually means?

Mostly, I no longer have alot of external demands, so I don' t feel like adrenaline is an issue.

HOWEVER: the other day, I sort of laid down on my back on the sofa and nodded out (this is something I generally don't do, lie down on my back). I nodded out three times, and each time got wrenched back to conscious ness by the Monkey Startled Fall Out of the Tree reflex.

This suggested to me- its an example, perhaps, of how JUMPY our nerves are. I startle very easily.

So is this part of this "adrenaline" thing? I wonder.
 

Booble

Senior Member
Messages
1,397
I"ve noticed around PR that alot of comments are made about "running on adrenaline". I sometimes wonder what this actually means?

Mostly, I no longer have alot of external demands, so I don' t feel like adrenaline is an issue.

HOWEVER: the other day, I sort of laid down on my back on the sofa and nodded out (this is something I generally don't do, lie down on my back). I nodded out three times, and each time got wrenched back to conscious ness by the Monkey Startled Fall Out of the Tree reflex.

This suggested to me- its an example, perhaps, of how JUMPY our nerves are. I startle very easily.

So is this part of this "adrenaline" thing? I wonder.


When you got startled, did your heart race and if so how long did that last?

I learned the other day how I differ in this regard to non-CFSy hubby.
The other night he went to sleep before me and something came up and I needed to wake him up. The light was still on in the bedroom but he was sleeping. I stood over the bed and called his name. He was all confused and made fear-type noises. I said, "It's just me" and he looked at me with the most frightened look I've ever seen. Then he fully woke up, got up and his heart rate went right back to normal.

Conversely when he wakes me up out of a sound sleep, my heart starts racing and going crazy and it doesn't stop for hours. And then I feel like dog shit for days.
 

Rufous McKinney

Senior Member
Messages
13,251
When you got startled, did your heart race and if so how long did that last?

I did not really notice that- I suspect I may just not be quite as Heart Racy as some are.

My neighbor at my door last week with major grievance- that caused me a huge adrenaline attack, I probably was shaking for half an hour. But my heart didn't do that (race).

I learned the other day how I differ in this regard to non-CFSy hubby.

My husband goes out much more deeply than I- including he thrashes around alot and hollars in dreams. I don't do this. He is really hard to wake up.

my heart starts racing and going crazy and it doesn't stop for hours. And then I feel like dog shit for days.

well, interesting sucky symptom! I hope you can minimize that happening....like I hope to minimize running into my neighbor again.
 

Booble

Senior Member
Messages
1,397
I did not really notice that- I suspect I may just not be quite as Heart Racy as some are.

My neighbor at my door last week with major grievance- that caused me a huge adrenaline attack, I probably was shaking for half an hour. But my heart didn't do that (race).



My husband goes out much more deeply than I- including he thrashes around alot and hollars in dreams. I don't do this. He is really hard to wake up.



well, interesting sucky symptom! I hope you can minimize that happening....like I hope to minimize running into my neighbor again.


Minimizing running into neighbors is something we excel at. :)
 

Woof!

Senior Member
Messages
523
I don't think mine is food related except for foods causing migraine aura (silent migraines). I'll go with:
molds
dust/dander
pre-storm weather.

There is a spot for all three of the above in our poll. :)
If your migraines lead to increased ME/CFS symptoms, include them, too. If they don't, then don't.
Thanks for taking the poll!
 

Woof!

Senior Member
Messages
523
adrenaline rushes *
*This can be caused by both startling adrenaline -- being awoken from deep sleep, a loud unexpected noise or "good" adrenaline from a great call with a client.
The kind of adrenaline rush that results from being woke from a deep sleep or a loud unexpected noise reflect our body's fight-or-flight mechanism (something practically all creatures have for survival). Interesting in its own right, but even more interesting in FM patients (and ME/CFS patients, too?).

My FM was diagnosed long before my ME/CFS, and one thing I learned was just how many FM patients had histories of big scary events happening to them (one or more). Examples of this include: car accidents, sexual abuse, muggings and (in my case) a horseback riding accident in which my horse rolled over my head, leaving me crumbled in the dust (my fault, not his!). In all of these cases, our bodies go into a fight-or-flight, heart-pumping freak-out that seems to use up almost all available adrenaline. This adrenaline depletion is why, before I was diagnosed with FM, Addisons Disease had to be ruled out.

In other ways, it's a lot like PTSD, which I swear I got from having a beeper (OK, now I age myself) when I was a newly graduated intern on call every other day. For two whole years after I turned that damn beeper in after transferring to another position, if someone else's beeper went off across the room, my heart would race, my face would pale and I would crumble to the ground, not fainting, just unable to move.

All a good topic for another thread, so as not to go too far off topic here. I appreciate you mentioning it, tho!!
Lynne
 

Booble

Senior Member
Messages
1,397
The kind of adrenaline rush that results from being woke from a deep sleep or a loud unexpected noise reflect our body's fight-or-flight mechanism (something practically all creatures have for survival). Interesting in its own right, but even more interesting in FM patients (and ME/CFS patients, too?).

My FM was diagnosed long before my ME/CFS, and one thing I learned was just how many FM patients had histories of big scary events happening to them (one or more). Examples of this include: car accidents, sexual abuse, muggings and (in my case) a horseback riding accident in which my horse rolled over my head, leaving me crumbled in the dust (my fault, not his!). In all of these cases, our bodies go into a fight-or-flight, heart-pumping freak-out that seems to use up almost all available adrenaline. This adrenaline depletion is why, before I was diagnosed with FM, Addisons Disease had to be ruled out.

In other ways, it's a lot like PTSD, which I swear I got from having a beeper (OK, now I age myself) when I was a newly graduated intern on call every other day. For two whole years after I turned that damn beeper in after transferring to another position, if someone else's beeper went off across the room, my heart would race, my face would pale and I would crumble to the ground, not fainting, just unable to move.

All a good topic for another thread, so as not to go too far off topic here. I appreciate you mentioning it, tho!!
Lynne

I mention it because it triggers my ME/CFS systems for a couple days. Way more than any food or most of the other items on the list.

To your point about PTSD. My first introduction to my friend adrenaline was when my Dad had a heart attack. He was only 47 years old. I was in high school. It was late, late at night. My sister was home from college and had just come home (drunk). I heard my mum calling 911 and giving our address. And then she came into our bedroom and said, "Daddy thinks he is having a heart attack." And then in minutes the firemen were clomping up the stairs. My mother and older brother went in the ambulance. My (drunk) sister and I went down to the kitchen to try and sober her up. I started shaking uncontrollably. I had never done that before.
Hello, adrenaline. Nice (not) to meet you! My father survived and lived to 84. But I spent years and years and years having dreams with him in them, falling to the floor. Every time he showed up in one of my dreams he would fall to the floor. Clearly I was traumatized.
 

Woof!

Senior Member
Messages
523
To your point about PTSD. My first introduction to my friend adrenaline was when my Dad had a heart attack. He was only 47 years old. I was in high school. It was late, late at night. My sister was home from college and had just come home (drunk). I heard my mum calling 911 and giving our address. And then she came into our bedroom and said, "Daddy thinks he is having a heart attack." And then in minutes the firemen were clomping up the stairs. My mother and older brother went in the ambulance. My (drunk) sister and I went down to the kitchen to try and sober her up. I started shaking uncontrollably. I had never done that before.
Absolutely. Classic PTSD. Do you have FM, too?
 

Booble

Senior Member
Messages
1,397
Absolutely. Classic PTSD. Do you have FM, too?

I have no idea.
I don't even know if I have ME/CFS.

I make do as best I can. Fake it as best I can. Have good days and bad - good weeks and bad weeks. Sometimes it's good hours and bad hours.

I honestly think I was born with whatever. My mum was very sick with a bad cold virus when I was born. Or maybe the chicken pox as an infant. My brother had 2 little pox on him. My sister had a normal case. And little infant me had pox from head-to-toe. In my mouth. Up my private parts. What does something like that do to a little immune system. Who knows.

The only thing I'm pretty sure on is POTS and I didn't even know that was a thing.
 

Woof!

Senior Member
Messages
523
I make do as best I can. Fake it as best I can. Have good days and bad - good weeks and bad weeks. Sometimes it's good hours and bad hours.
I know that feeling! I know not everyone will agree with me, but I often feel it's God's way of reminding me I'm not in charge, and I can live with that.
 

Rufous McKinney

Senior Member
Messages
13,251
I honestly think I was born with whatever. My mum was very sick with a bad cold virus when I was born. Or maybe the chicken pox as an infant. My brother had 2 little pox on him. My sister had a normal case. And little infant me had pox from head-to-toe. In my mouth. Up my private parts. What does something like that do to a little immune system. Who knows.


Oh.....Hugs:hug::hug::hug:...

I was one very sick kid myself, and long to interview my now departed mother, on the chance some further explanations could be teased out. I'll have to try psychic channeling, now.

Because of the zero diagnosis and zero doctors helping, I had zero grasp that I had ME....until quite recently.
 

Booble

Senior Member
Messages
1,397
Oh.....Hugs:hug::hug::hug:...

I was one very sick kid myself, and long to interview my now departed mother, on the chance some further explanations could be teased out. I'll have to try psychic channeling, now.

Because of the zero diagnosis and zero doctors helping, I had zero grasp that I had ME....until quite recently.

Oh, thanks.
We weren't allowed to be sick kids in our family. You bucked up and went to school. And threw up on car trips.

I had something that I took while growing up that we called "Green Medicine." It was a liquid antihistamine. I loved my green medicine. Turns out they banned it later because it had some kind of cocaine in it. :rofl:;)
 

Woof!

Senior Member
Messages
523
With 29 people taking the survey so far...
More than 65% have increased symptoms with hot and/or cold weather;
More than 40% have increased symptoms with fragrances, grains and/or processed sugars
Almost 1/3 have their symptoms triggered by smoke and/or dust & dustmites, and
Almost 1/4 have similar issues with starches and/or mold & mildew.

Sound familiar?

PorkChop and I sure hope to get at least 50 people taking this survey. (That's PorkChop in my picture.) :thumbsup:
:rolleyes: Pass it on...