• 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, 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.

Random Flares

Carrigon

Senior Member
Messages
808
Location
PA, USA
I hate random flares. I woke up today in a massive flare out of nowhere. No reason for it, I didn't really do or eat anything yesterday that would cause this. I'm just in a massive flare up.

I feel like someone is ripping every nerve cell out of my body. My head hurts, the light hurts, I'm in pain all over. I've got the fatigue of the dead. And I'm cold. It's going to be like ninety out today, and I'm cold. I've actually been cold for like two months. This whole summer, I'm always freezing. I have to keep turning the air off because I'm too cold and it's painful on me.

I am so sick today, I just want to curl up under a warm rock and not move.

I just wish it wasn't so unpredictable. You just never know when you'll be hit.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,103
Location
australia (brisbane)
Random flares, i pictured someone from the 1970s with a big afro jiving down the street, lol. Sorry i couldnt resist, hopefully u get a laugh, it sometimes help.

I know where your coming from though, out of no where, its not fare, u can understand it more if u have some sort of fun or do something productive and so have to pay for it but not when u have been resting up, u basically have nothing to show for it, bugger! All i can suggest is try and find a good cocktail of meds for sleep if u use them and try and sleep it off like a hangover, or maybe alot of good relaxing herbs like valerian, withania etc etc, i also have a high dose injection of b12 when im like this, not sure if it helps but cant hurt and b12 can help with nerve type pain as well as an antioxidant that can help overcome a 'crash' 'flare'.

I feel for you as i have just gone through a cycle of constant headaches onto an insomnia patch, its hard to ride it out but it will end, hopefully soon.

cheers!!!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Sorry you are worse than usual. This thread reminded me of when I had a Major flare about 2 years ago, I am still recuperating from that!

GG

A gentle hug for you.:hug:
 

lansbergen

Senior Member
Messages
2,512
I hate random flares. I woke up today in a massive flare out of nowhere. No reason for it, I didn't really do or eat anything yesterday that would cause this. I'm just in a massive flare up.

Can you remember what you did 7 to 10 days ago?

I noticed my flare ups started 7 to 10 days after I overdo.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
I just got one last nigh Carrigon. Up till now I thought my flares were only associated with PEM but I guess not. I've been trying to recover from a flareup for the past month so I haven't done any activity. Now I'm as sick as I was when my CFS kicked into high gear earlier this year. For me it feel like an awful sinus infection. Fever, facial pain, ears so plugged I feel like my head is going to explode, sore throat, fever of about 3.5 degrees, watery eyes, facial pain and so on. At least with flares from PEM there is some feeling of control of the symptoms but with random ones even that is gone. I do have another condition that has been acting up and I wonder if the stress on my body from that set off this flare. Either way random flares are not fun, hope yours improves soon.
 

Valentijn

Senior Member
Messages
15,786
Are random flares really random? Or triggered by something we just haven't figured out yet? I crashed last week, even though my activity levels weren't higher than usual, etc. But I did spend a couple hours intently trying to follow a conversation in Dutch (which I don't speak very well).

I'm pretty sure my neurotransmitters are somehow connected to my orthostatic intolerance, since treating the one has helped the other immensely. And I know glutamate (an excitotoxin) specifically is involved in learning. So maybe something happens when my brains spends a couple hours intently trying to store new info/create new connections, due to the high excess of glutamate, which in turn has an effect on ME symptoms?

Maybe MCS is involved in a similar way ... there's tons of glutamate receptors in the olfactory area. What happens when you have too much glutamate to go with it, and get exposed to certain smells?

I'm a bit glutamate-fixated lately, but it gives me something interesting to think about :p
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
The thing is, we are exposed to so many chemicals, toxins, radiation, all kinds of things every day in our world. It's in our food, our water. Just everywhere. It can be from second hand smoke, a neighbor cleaning with chemicals, anything. And it will set us off. When you are hypersensitive like we are, that's the problem.