Describing a Flare

People always ask me to describe a flare. And since I'm in one today, I'm going to describe it.

Woke up like I had no sleep, so the fatigue is on. Fatigue so bad that I cannot walk across this apartment, can't do anything but sit or lay down. Fatigue in the limbs, trouble moving arms, they feel like lead weights.

The pain feels like someone is ripping every nerve cell out of my body. It's bodywide pain. Everything hurts, my joints, my flesh, every single part of me is in severe, screaming pain. Even my fingers as I type this, they hurt, the joints hurt.

I have the sound and light sensitivity and when I'm flaring like I am today, every sound, even the sound of the clocks ticking in my apartment are killing me. Sound hurts. Light feels like someone is just stabbing knives into my eyes. It's almost like having a migraine or a bad hangover, but without the headache. You know, Edgar Allen Poe described this disease perfectly in The Fall of the House of Usher. I always thought he must have known someone with it, all the way back then.

Brainfog, sort of fogged, like I was drugged. Can't really process anything, can't do anything, phone calls are out, can't concentrate on any one thing for very long.

Stomach problems, the IBS seems to usually coincide with all this or a POTS attack. Usually feel like I'm going to collapse in the bathroom. Although, there is always this feeling of not knowing if you're going to puke, pass out, or have to use the toilet.

POTS/NMH blackout feeling. Stand up and OMG, better sit right back down cause it goes black behind my eyes and I'm gonna faint. Sitting right back down isn't a choice, the legs just kind of collapse on down, can't get up.

And in general, feeling like I could just fall asleep right here, but I'm in too much pain to sleep. I also get weird severe cramps, sometimes it feels like something is just plain moving around, like Alien. You kind of feel like one of these days an Alien is going to pop on out of you. But since they never found one on any of the CFIDS/ME autopsies, I haven't a clue why it feels this way. My friend Kathy gets that, too.

When I have days like today, I just spend the whole time wishing I was dead. That's how bad it is. And the only comfort I have is knowing that the flare doesn't last. Sometimes, it lasts a day or two, sometimes it can last up to a week or so, but this level of the flare usually doesn't last. But it's really bad and fully incapacitating. And I never know what day I will feel like this. I never know when this will happen. Sometimes it's triggered by doing a normal thing. Like yesterday, I did my laundry. I was down in the laundry room of the building for almost two hours. You have to wait there or someone will mess with your clothing, I've had it happen. But just being there for the two hours, bang, I'm so incredibly sick today, I wish I was dead. This can happen with doing anything normal. If I dare try to do one normal thing that healthy people take for granted, I'm usually laid up like this. I pay in spades.

So there you have it, a description of a flare. And this is why I can't socialize or join things or do anything because just one social outing can set this off and it's never, ever worth it. This level of pain and suffering is never worth it.

I always get people who will say, "have you tried........" whatever treatment, med, thing of the moment. I have had this for nineteen years, I have tried many things, NOTHING on this planet has ever stopped this from happening. It just plain happens. It doesn't matter what protocol, it doesn't matter how many meds, it doesn't matter how many supplements. I still get these flares every single time I do anything normal. Something is attacking my central nervous system and my brain and there is nothing that works on it. And no amount of happy, happy, joy, joy thoughts helps. No pain medication touches this. Narcs do NOT work on this. Until a REAL treatment comes along, this is my life.

I think I usually function under the same symptoms, but they are less severe than this, so it's kind of like, every day is like this, but less, and when I do things, then it flares up. But this is why I can't go to social functions. The lights, the sounds, the smells, they all flare me up. I can't go to a movie, the loud noise and big screen would almost kill me off. I can't go to parties, the music hurts like hell and the chatter and smells of the food and all that MCS flare up stuff. I just can't be around it at all. About the only time I'm not suffering alot is when I'm alone in a quiet environment.

I wish I had a secluded island to live on. It might be the one thing that would help :)


I am so sorry your days are like this Carrigon. (big hug - but gently - I know a hug can hurt)

Thank you for writing this. You have described a flare / crash very eloquently. I have just emailed a link to your post to my husband's Doctor. He is sympathetic to John, but as, of course, there is no way John could make it down to see the Doctor, except on a good day, the Doctor has never seen what John's life is really like.

Your post has done us a great service. Thank you.

Pam and John
I think the more healthcare workers that read it, the better. They need to know what is beyond the horrible name of this disease. This is our life, this is how we have to live every day. They need to know it's not just a disease of being tired. We go through unimaginable suffering from this disease for years and years.

I'm sorry your husband has it, too. Hugs :)
Thanks Carrigon for posting this
If they haven't been there they won't understand but maybe they might at least realise that they don't know and have a bit more compassion.

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