How Do You Crash? An ME/CFS and Fibromyalgia Inquiry

[Cort]

In Jen Brea's recent Refinery interview she stated

When I crash, all my systems can’t work. It's sudden, and I won't know that I have it until I start getting symptoms. It depends how bad it is, but oftentimes I'll just be completely immobilized.

[bimg=fright|no-lightbox]https://www.healthrising.org/wp-content/uploads/2015/02/ME-CFS-Crash.jpg[/bimg]That brought to mind Julie Rehmeyer whose body responds to mold sometimes by becoming suddenly paralyzed. She literally cannot move.

I have a different way of "crashing" or, in fibro-speak "flaring" however. My crashes or flares come on gradually and worsen over time and then get better.

That made me wonder how many different types of crashes or flares there are.

Hence this poll

 

[Seven]

I have different type of crashes:
1) Too much activity: this kind triggers the pain and sleep issues.
2) Inmune is overactive: somebody in the family will break a virus a few days later. I can always predict somebody will get sick. This type triggers lymph issues, malaise, flu like.
3) Too much inflammation: my colitis can send me into a crash. This is the type that will leave me paralyzed. Also reactions to meds and foods. This will affect sleep also. Malaise is more burning, tingling, brain symptoms like speaking, dropping everything I grab....

 

[Billie]

There is another kind of crash: When you have life events that are difficult for anyone. I am in a big crash through the death of a
loved older sister, who has been around all my life, she was 16 when I was born. CFS/ME and grief are very poor bedfellows. No chance
of diversion. Yet this grief must be felt, as it is your love, but it takes its toll. Then the flu came as a diversion, and there is an epidemic
in Australia; the thing I don't want to do is go to hospital or have a vaccine. So, face the facts, big crash, not back to square 1 which
would be unbearable, but a big crash of all symptoms returning with a vengeance. Very hard to have any acceptance, very hard to surrender.
It is as it is. I am submitting this to show the diversity of reasons a person would crash, and it is given in good faith, and hopefully to
help anyone else. Billie

 

[Seven]

1) Too much activity: this kind triggers the pain and sleep issues.
2) Inmune is overactive: somebody in the family will break a virus a few days later. I can always predict somebody will get sick. This type triggers lymph issues, malaise, flu like.
3) Too much inflammation:

1) Extra rest like adding a nap at noon, GO to bed earlier, energy boosters increase: like more COQ10 ( I will take an extra 400mg), Increase d-ribose or energy supplement.
2) For this type I back off of all pills, and be very careful on foods, Eat bone broth. Let my immune system settle (do not add log to fire).
3)Eat green and avoid inflammatory foods, worst case scenario, take advil every 6h.

 

[Billie]

sorry to hear of your loss @Billie and you are right big life events can cause big extended crashes I would agree with you there

Thankyou Molly, I appreciate your understanding

 

[Cort]

Forty percent of people - crashes can come on suddenly. I think that's amazing!

 

[Cort]

There is another kind of crash: When you have life events that are difficult for anyone. I am in a big crash through the death of a
loved older sister, who has been around all my life, she was 16 when I was born. CFS/ME and grief are very poor bedfellows. No chance
of diversion. Yet this grief must be felt, as it is your love, but it takes its toll. Then the flu came as a diversion, and there is an epidemic
in Australia; the thing I don't want to do is go to hospital or have a vaccine. So, face the facts, big crash, not back to square 1 which
would be unbearable, but a big crash of all symptoms returning with a vengeance. Very hard to have any acceptance, very hard to surrender.
It is as it is. I am submitting this to show the diversity of reasons a person would crash, and it is given in good faith, and hopefully to
help anyone else. Billie

Sorry to hear that Billie! I'm sorry for your loss.

For whatever reason emotional stuff just takes a bigger physical toll. I am very familiar with that. Our bodies just aren't as resilient as they used to be.

Thanks for sharing that.

 

[Zapped]

My crashes are a kind of aura, like a migraine coming on. If I've only pushed a little too far I can hit the sofa and shut down stimuli and it will hold steady and gradually diminish, maybe later in the day, with residual.

If I have pushed too far the aura starts and progresses to an all encompassing lability, where I need sofa rest when it hits, right after efforts, and lasts from a few days to a week, plus. Maybe on second day I can walk to the mail box - and each day add a little more up time and light activity.

I would venture a SWAG that the affects of a cras are cumulative, such that I don't go back to the pre-crash state of health???

 

[Homina]

crashes can come on suddenly

It is really hard to know when it's coming but if I am doing more than I normally consistently do and don't slow down, it comes. If I keep track I can predict I think
But I don't feel worse before a crash I feel pretty good
Then
One day I wake up and there is no gas in the tank

 

[JustAmanda]

Interestingly I have noticed that my PEM has followed a pattern over the years. For example currently my cognitive function will start to deteriorate, if I don't rest right away this will also affect me physically in that I become clumsy. Some hours later/during the night I'll get the next stage, the crash proper.

At one time, when I was pretty good at about 70%, the first sign a crash would come later was that my right thumb would spasm; past time to go lie down!

To some extent I can use this to avoid worse crashes. Anyone else get anything like that?

 

[Abrin]

Forty percent of people - crashes can come on suddenly. I think that's amazing!

I can't speak for anyone else but I know with me that adrenalin will sometimes stop me from noticing that I am slowly crashing and then when it finally happens it is like hitting a wall.

 

[Homina]

I can't speak for anyone else but I know with me that adrenalin will sometimes stop me from noticing that I am slowly crashing and then when it finally happens it is like hitting a wall.

That sounds right
Thanks

 

[Farmgirl]

Forty percent of people - crashes can come on suddenly. I think that's amazing!

I am sometimes surprised when the crash hits, even though it happens everyday, and worse if I do more. I find it strange that it still comes as a surprise to me that I cannot move. I think there is always some far off hope that I will wake and move and live ...like most everyone else.

My husband and I laugh and when I "over-do" ...sometimes I drive myself real hard to reach a goal so I can feel "normal". He pretty much lectures me...you are gonna overdo...but I don't listen...then I am down laughing at how stupid I am!

 

[sophie]

My crashes are gradual, in the sense that I begin with an "overwhelmed" feeling about all the things i need to do, as if I suddenly can't cope, feel more exhausted than normal. At this point i drop some stuff/activity (my good level of functioning is about 30-40%) to create bigger rest patches, however I then think that means i can replace the stiff i've dropped with other things (makes no sense i know). I then splutter on for a bit like a car running out of petrol, getting gradually worse, but still trying to hang on to doing some things, this can go on for a few weeks to the point where i finally hit the bottom. That means being bed/housebound for as long as it takes, crying sometimes with frustration but also resigned to it in a way.

Then usually bumping along the bottom for weeks, being bed and housebound until i start to feel something shift. At this point having to be extrememly careful not to set myself back, but as it starts to lift i feel as if I have come out of a horrible bad dream that i didnt think would ever end, and promising myself that I will never allow myself to let that happen again. But I do as its ALWAYS in retrospect that I see what has happened, rarely when i'm on my way to a crash.
xxxxx

 

[sophie]

There is another kind of crash: When you have life events that are difficult for anyone. I am in a big crash through the death of a
loved older sister, who has been around all my life, she was 16 when I was born. CFS/ME and grief are very poor bedfellows. No chance
of diversion. Yet this grief must be felt, as it is your love, but it takes its toll. Then the flu came as a diversion, and there is an epidemic
in Australia; the thing I don't want to do is go to hospital or have a vaccine. So, face the facts, big crash, not back to square 1 which
would be unbearable, but a big crash of all symptoms returning with a vengeance. Very hard to have any acceptance, very hard to surrender.
It is as it is. I am submitting this to show the diversity of reasons a person would crash, and it is given in good faith, and hopefully to
help anyone else. Billie

I totally agree with you about this, and what an extremely difficult thing for you to have to deal with, I really felt for you when I read this. The toll that must have taken on you is immense xxxx