What does your crash feel like?

I’m currently crashing and I’m just curious about how you would describe your crashes/flares/PEM/bust phases? What does it feel like? (Bearing in mind I won’t be able to read long answers )

To me it feels like the top of my spine is inflamed and also the area which is likely my spleen. Light is like a dagger through my head. Pain killers don’t make any discernible difference to the pain. I alternate nausea and IBS symptoms. I get too exhausted to sleep or stay asleep. As it eases I feel like I can do something but the slightest effort at concentration increases the symptoms again.

To other people I describe it as ‘migrainey’ but I don’t think I technically have a migraine. It isn’t that throbbing pain, it’s consistent pain, and it isn’t one side of the head. But the combination of pain, nausea and light sensitivity make this a description other people can relate to.

It would be great if this thread was direct and to the point (so people can read even if they’re doing badly). How does it feel for you?

 

• Waves of nausea especially when thinking
• Knitting needle through the eye type headache (sharp stabbing)
• Joint pain ....in legs mainly..throbbing pain and sharp stabbing when I move
• Intense brain fog, can't hold a conversation can't concentrate on anything can't remember people's names/poor word recall
• Light and sound sensitive can't tolerate sharp noises like dishwasher being unloaded in the background
• GI flares
• Skin outbreaks and hives

These are symptoms I get off and on outside of crashing but are ramped up in intensity during a crash

 

@arewenearlythereyet our experience sounds pretty similar

 

My crashes has been altered very slowly over the years, that my initial crash and most recent one is very different somehow. But this happened over some 13 years.

My very recent crashes very like yours @Jenny TipsforME, the only difference is light does not bother me but instead I have a very fuzzy vision. Actually light helps for a clearer vision. Another difference is the sleep. I sleep 12-14 hours uncut but un-refreshing sleep during the crashes.

I add 3 more symptoms on top of all the above ones,

1. jaw pain (it is less in recent crashes, it used to be unbearable).

2. rectum pain (now this is unbearable where it wasn't so prominent in the past).

3. I'm unable to deal with human beings around me. I don't want anyone around me, I don't want to hear or talk to anyone. I actually feel very uncomfortable and disturbed if someone apart from my husband comes near me. I can't explain this very well and this is a very new thing that I experience.

 

If I had to use just one word for how my crashes feel like: Feverish.

(with all that entails - a feverish sensation knocks your cognition out, your whole body feels weak, hypersensitivity to stimuli increases, you are unwell from head to toe)

 

I also get all these symptoms, not so much the GI issues though since going gluten and dairy free.

I will add a couple more

Inability to stand as O/I becomes considerably worse with severe dizziness. Inability to sit up, have to be horizontal until recovered a little

Waves of feeling hot/sweating, which is usually followed by

Feeling icy cold and unable to get warm, hands and feet freezing

Initially unable to get to sleep (tired but wired), but will sleep for longer than usual for many days following the onset of PEM

It feels to me how I imagine bleeding to death with a head injury, after being hit by a truck would feel. Bruised, battered, barely any cognitive ability, in severe pain and feeling like the life is ebbing out of me.

 

Hollowed out and buzzing but not in a good way kind of shakiness
Legs drained of blood and filled with concrete
Only thing that can move is the eyes and the nausea is pulling the curtain down on them for sleep that is like passing out, coming partially conscious then going under again
Loss of peripheral vision and a white noise tinnitus are just pre the tsunami hitting
Lumbar spine on fire and crushing headache

 

• Extreme exhaustion
• Can't think

 

Yes! I also get the burning, electric like pain in spine, it feels like the spine is inflamed and pulsating.

Also forgot

Shaking, arms especially, legs, have spilt the whole contents of a drink many times due to arm shaking.

Palpitations, tachycardia, irregular heart rate

Difficulty swallowing, plus frequent choking on both drinks, tablets and food

Air hunger, laboured breathing, having to concentrate in order to breathe as it feels like you are no longer breathing automatically.

Collapse

 

Myalgia, mainly in the thorax and arms
Fatigue gets worse
I need to lay down in my bed feeling
IBS
Palpitations
Shivering
Brain fog, poor word recall, can't focus on anything.

 

Although most of these are a daily issue they all increase after exertion. Laundry, grocery shopping which my friend has to drive and push cart and help me take groceries into apartment and this is only fresh/frozen items every 6 weeks as dry goods and toiletries are delivered, walk to my mailbox which is about 1/3 mile round trip to and from my apartment and I can only manage once every week or two, doctor's appointment which I can drive for now. The more exertion the worse the symptoms. Overall I am in my apartment for 10 days to 3 weeks at a time.

*Daily fatigue becomes flesh crushing fatigue.
*Can not talk properly; very loud with some words at almost a bark but very weak overall.
*My brain burns and hurts; feels like water soaked cotton.
*Cognition becomes worse than it already is. Word recall is worse than it usually is. No ability to focus on what I am watching on TV.
*More unsteadiness walking. Dizziness increases.
*Stomping around as I can't land my feet correctly.
*Tinnitus becomes worse.
*Painful glands/lymph in neck and underarms.
*Pain becomes worse and very sharp in the back and neck. Muscles hurt more.
*Temperature control worse than usual. Hot sweating on skin and cold to bone or hot flesh and cold sweat.
*I can feel my spinal cord as it gets hot and sometimes burns.
*Eyeballs hurt.
*Migraines and headaches get worse.
*Sinus headaches get worse.
*Can not remember anything I am trying to do in the moment.
*Temperament very difficult to control and cannot navigate any problems without becoming angry.
*Hyperacusis (sound) and light sensitivity worsen.

And although many of these symptoms can kick in immediately say, after grocery shopping, the fatigue seems to be the one that will come 24-72 hours later. I have an odd surge that isn't energy but "something" going through me that seems to be opposite of fatigue. But the other symptoms can definitely increase 24-72 hours later.

Also, every night when I get into bed or when I lie down during the day my flesh is vibrating. It seems worse at night. When I awaken in the middle of the night and also in the morning I am not vibrating.

 

This thread reassures me strangely. It always helps to see others with the same symptoms. It reminds me how real this illness is.

I can go for weeks without a crash but I’m in one now. I don’t think I’d be able to describe how I felt if I wasn’t in the midst of it.

I feel as if my whole system is swollen from the inside. I look no different on the outside but the swelling is enough to make my head, stomach and limbs hurt.

My throat is closing up but I keep forcing food down as it feels like eating the right thing might just make me feel better. It’s like I’m full of poisonous venom, just under the surface; the swelling pushed onwards and outwards hurting both ways. Any touch is painful.

My mouth tastes horrible.

I’m thirsty but drinking anything just makes me urinate even more than usual. I’m always constantly thirsty but this feels another level.

My nose hurts. My hands and arms hurt. I can walk but it makes me feel sick being upright.

 

This thread also reminded me I don’t think I had migraine as part of a crash in the first stage of my illness. I had crashes and I had migraines but not together.

Now if i overdo it the migraine feeling is the most overwhelming, but it feels like the migraine is all over my body in a different way to migraines felt before I got ME. Then, the migraine was excruciating head pain and vomiting/ nausea, but limited to those symptoms only.

 

And Crawley calls it post exertional fatigue

 

With PEM I feel like I am close to death,
Like i have been poisoned,
Organs feel like they are shutting down,
Chest hurts,
Legs feel like lead,
Glands in my neck swell,
My body doesn't want to move or have to think, I never knew it was possible to feel this ill!!

 

• Extreme exhaustion
• Shakiness
• Feel too hot in my head - my eyelids sweat...
• Intolerant of noise, light, movement, smells, touch
• Nauseous
• Emotionally labile
• Sometimes tachycardia
• Chest pain
• All over soreness
• Headache
• Struggle to process information

 

Inmune Crash:
Fluish, Joint pain, brain fog...

Over do Crash:
phase I = Drop things on left hand, brain fog, depth perception issues, noise sensitivity, muscle pain
if push after that
phase 2= Yawning, extreme fatigue, Brain fog intensifies, heaviness on legs, and all muscles, insomnia, sleepiness (twired) ...
if I push after that
phase 3 = loose voice, hearing hurts at this point, cannot move, start loosing basic function (swallow...)
phase 4 = Loose consciousness, I will be paralyzed and unable to even hear or wake me up.

 

I’m coming out of the crash now and it’s actually quite a nice, cozy, sleepy fatigue. I’m now sleeping a lot (mid crash I couldn’t sleep despite exhaustion). I have pain in my joints, probably due to sleeping position or similar, but generally the feeling of inflammation has gone.

I don’t mind this phase, I just have to accept I can’t do much. It’s not torturous like the depths of the crash is.

Interestingly the switch seemed to happen quickly. The friend currently staying with me got a cold. I had the perception that my immune system switched from fighting my own body to fighting a genuine threat. Of course I could be completely wrong.

 

This is the point I start craving carbs. Glad you are crawling out of the pit