• 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.

Can someone help me interpret this please.

xlynx

Senior Member
Messages
163
Location
London, UK
Hi Fresh Eyes,

Thats a good point, I have noticed that quite alot of my flares start with a burst of emotion.

There are so many factors to take in and as time is passing with cfs I am better able to accept the symptoms because I have some pretty good justification for them which removes the extra stress of thinking why.

What still amazes me though is every time the emotional or the physical symptoms hit me I cant believe just how bad they make me feel. Even if I only had a 2 minute break before the next wave I still get amazed.

How can anyone ever understand what its like to live with cfs when I forget whats its like after 2 minutes. :D
 

Jody

Senior Member
Messages
4,636
Location
Canada
xlynx,

That is so true, in my experience as well. As familiar as I am with my illness, my symptoms, etc. , when I am doing better for a time, but then have a relapse ... I am shocked by what these symptoms feel like. The physical sensation of them. Horrible.

And yes, I have forgotten just how bad it really feels when I am really sick. Done this many times in fact.
 

Jody

Senior Member
Messages
4,636
Location
Canada
Hi xlynx, Your situation sounds so familiar, especially the part about trying to figure out what you've done to cause it! I have a bit of a different take on the emotions. I've found that, for me, the first symptom of a flare is always "emotional". I've come to realize that's just the first sign of the physiological, chemical shift in my body. It might be a pounding heart or a cold sweat, which my mind interprets as "I feel afraid" or whatever - but it's just a chemical symptom.

That said, everybody else is right too about pacing, food, and the thing just having a life of its own, too! :)

fresh eyes,

This is I think an important thing to keep in mind.

The "emotion" is not really ... an emotion. It can be a physiological reaction of the body which ... feels like a certain emotion.

For instance, re-copying a four point list for my husband some years ago set off what "felt" like an anxiety attack that lasted for a couple hours. Had to go to bed, felt like I would vibrate to pieces.

Was I afraid of anything on that list? No. They were groceries. Had I worn my self out coming up with this list? No, they were recopied from a different list.

Was I worried about him going to the store? No, I wanted him to go buy the groceries. :)

Physiological reaction that "felt" like fear.

Gluten can do this to me too. Or sugar. I can "feel" terrified, with my stomach in knots, on the verge of hysterics. Physically induced. "Feels" like something else.

Helps to keep in mind what it actually is, and that it will pass. Sometimes, psychotherapy has its place. And sometimes, like here with what we're talking about on this thread, it doesn't.

The body is one wild piece of work.:rolleyes:
 

xlynx

Senior Member
Messages
163
Location
London, UK
Hey Jody,

I have had the same thing with sugar.

I tried to make stevia chocolate once, lol dont do it, bitter isnt the word it was nearly as bad as mud :D.

My doc told me its because I have an candida overgrowth and have been trying anti fungals for 3 weeks, cant say its done anything for me except make me worse. In your opinion are anti fungals worth perusing?

Sorry I know its another question, dont want to drive you mad!:eek:

Im like a eager apprentice lol :D
 

Jody

Senior Member
Messages
4,636
Location
Canada
LOL

xlynx,

There's alot to figure out, and you've found a source of some possible answers.

I know you have lots of questions. :D

I don't have experience with anti-fungals, so couldn't say on that.

But I have had good experience with low-carb/ high protein / high (good) fats eating. By cutting out starches and most carbs (including the so-called healthy whole grain -- they are not healthy for me) I starved candida and lost 40 or so lb. over a period of a year or so (that needed losing, I'd put on a ton of weight). Gone down from 200 lb. 7 yrs ago, to 145 - 150 lb. Plus, my symptoms receded due to the diet change.

I still get flares and crashes. But the change in diet has definitely made me more stable and less inclined to crash. And, less likely to get physiologically created anxiety etc.
 

xlynx

Senior Member
Messages
163
Location
London, UK
Hey Jody,

Thanks for that, I also find that high protein gives me such a boost, if I eat lots of protein it improves symptoms.

Going to save some questions for later otherwise Im going to give the forum fatigue! :D
 

Jody

Senior Member
Messages
4,636
Location
Canada
xlynx,

Or you could give YOURSELF extra fatigue too, if you overdo it. :)

Don't worry about wearing me out, or anyone else here. We can always just ... log off the forums, turn off the computer and walk away. Okay, it's not quite as easy as it sounds.:rolleyes:

So if you have more questions, go ahead and ask. If we're not up to it just then, we'll do it later. And maybe in the meantime someone else will have wandered by with an answer for you.

The beauty of forums. :)
 

Lily

*Believe*
Messages
677
Don't hold back -

Don't hold your questions on our account, xlynx. I think people quite like to answer questions when they can. Helps all of us feel like we are contributing something. I know that for some, it's the only thing that makes our existence meaningful anymore.

There's also only so much one can absorb in a day and you may feel your'e at your limit, but I just wanted you to know that it makes people feel good to help out when they can.

See you around:)
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
How can anyone ever understand what its like to live with cfs when I forget whats its like after 2 minutes.

I know, right? I'm the same way after 6 years. I feel better for a day and it's like, Why don't I have anything to do? And it's because I've had to cancel everything for the last 6 years! Classic CFS weirdness. :D
 

xlynx

Senior Member
Messages
163
Location
London, UK
Hey thank you both for that :)

This forum has replaced my local bar.

I will be flooding the forums again shortly :D

Going for a snooze (no meditation this time just in case!)

Take care
 

xlynx

Senior Member
Messages
163
Location
London, UK
Hey fresh eyes,

Lol, I have discovered that, I made a plan the other day for 2 hours in advance and had to cancel.

The best part is how do you tell someone you dont really know sorry I cant make it because of my cfs. I always make up some excuse like I think I have the flu lol.

Cya
 

blackbird

caged.
Messages
100
Location
UK
Apart from a week in bed recently, I've been fairly good recently.

...and start to wonder if it's all real.

Good job I've got a symptoms diary for the last 8 months or so. Will have to have a read back I think.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Weather?

I do agree that diet and emotions can play a part. However, I don't think anyone mentioned the weather. The only time I know for sure that a crash is coming is when a front is moving through. I don't know how many others have this issue but It took me along time to figure this out. My husband noticed this pattern before I did.