• 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 register, simply click the Register button at the top right.

Severe PEM...feels like I don't even have the energy to breathe....

soxfan

Senior Member
Messages
995
Location
North Carolina
So once again I am dealing with awful PEM and I have no idea what brought it on..I have had a very quiet..peaceful last few days. I went to bed last night with my insides feeling very overstimulated and in turmoil..I felt the vibration and shaking inside.

I wake this morning feeling like the life has been drained from me...I feel hollow and empty inside along with severe physical exhaustion. It even feels like I hardly have the energy to breathe. So here I lay with my heart feeling like it is pounding but I know it really isn't. My insides are shaking and it just takes too much effort to even talk.

I have an appointment with my new PCP tomorrow who is supposed to be knowledgeable in CFS. I am fairly certain there won't be much he can do but at least I can tell him my story and maybe he will have a different perspective on all this and not just say...I am sorry you struggle like this everyday like the prior PCP said to me....

Sometimes I wish I would fall asleep and not wake up...I know it is the PEM talking but to feel like this is so uncomfortable and nothing helps take away the exhaustion...physical draining feeling inside unless I knock myself out and I have nothing to do that with...
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Nope...I am sure. I have one of those finger oxygen and heart rate things..it is beating about 62 a minute which is my normal..I have never in the 11 years of this crap had a fast heart rate...ever....
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Sometimes I wish I would fall asleep and not wake up...

Just want to say I get that. I often say I wish i would wake up dead.

Sorry you feel so crap. I will say when I have stuff that bad there is usually a reason behind it. Usually it's a reaction to a medication I'm taking. Or even a supplement.

Have you stopped everything to see if that helps? I always find the culprit that way.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Honestly I am not holding out much hope....I saw Dr. Komaroff back in 2011 and he offered me nothing....didn't even do much testing. It is so very difficult to put into words what we feel when half the country complains about fatigue even though that isn't even the correct word for what I feel...I feel dead inside and drained of life along with unbelievable tiredness and zero energy.

@minkeygirl...I got my flu shot yesterday. So now am wondering if that is what crashed me. It never has before but who knows. I seriously had a relaxing..peaceful weekend. Nothing that would cause this today...ugh...ugh...
 

Apple

Senior Member
Messages
217
Location
UK
I feel like this a lot when i'm deep in PEM. I've heard people describe it as air hunger. For me it is literally as you describe - no energy to even breathe. I don't have any advice, but you're not alone with that particular symptom.

Hopefully it will pass by tomorrow :bouquet:
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@soxfan I've had times where I felt good then wham! Something decides not to like me.

It was always something I had been taking. It's frequently been something I've taken for a while. Propranolol one time.

Who knows with the vaccine. Could be? We are messes. For me, that severe misery doesn't happen without a reason.

Good luck
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Welcome back to NH! And I send a request to a friend who once had a support group going on in the Concord area. Remind me if I forget to post, give me at least a week though. This guy is often crashed :(

GG
 

Mary

Moderator Resource
Messages
17,285
Location
Southern California
@soxfan - I think minkeygirl is right - when I feel completely horrible seemingly out of the blue, it's most often a reaction to something I've been taking and if there is something I suspect, most often something new, I'll cut it out and see what happens. We do react badly to so many things and I think a flu shot could be one of them.
 

JAH

Senior Member
Messages
497
Location
Northern California
It is so very difficult to put into words what we feel when half the country complains about fatigue even though that isn't even the correct word for what I feel...I feel dead inside and drained of life along with unbelievable tiredness and zero ..

I think you did a really good job explaining how you feel.

I actually think about this a lot - there is insufficient language for the suffering that we feel. It is very difficult for people to understand the severity of our suffering - and for me to describe it. Except for pain. Everyone knows what severe and unbearable pain is, but the physical suffering is so different is CFS - I'm at a loss myself to explain the weird, disabling symptoms we have. When I went to the ER, I didn't have severe pain, (of course they asked the 1-10 question). but my distress level from 1-10, was a 10. A few weekends ago, the misery index was about a nine. Today, it's the fatigue. (And the word fatigue almost doesn't even count) Other days, it's the neuro, and some of the more esoteric, shaky, seizure- like symptoms, like you are having. On one of my worst days, I literally felt like I was disappearing into my body.

We need better writers...this is a disease with a thousand faces, and stories. Someone recently asked on a thread if it was normal to have different symptoms every day. I always say that each day is with CFS is different, but every day is exactly the same.

Sorry for the tangent. Hoping that it is PEM which should improve with rest. Good luck,with your new doc, and feel better soon,

JAH

And fellow disappointed soxfan. Guess I have to root for the cubbies...

 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Honestly I am not holding out much hope....I saw Dr. Komaroff back in 2011 and he offered me nothing....didn't even do much testing. It is so very difficult to put into words what we feel when half the country complains about fatigue even though that isn't even the correct word for what I feel...I feel dead inside and drained of life along with unbelievable tiredness and zero energy.

@minkeygirl...I got my flu shot yesterday. So now am wondering if that is what crashed me. It never has before but who knows. I seriously had a relaxing..peaceful weekend. Nothing that would cause this today...ugh...ugh...

The Eskimos have over 30 different words for 'snow'.

We have too few for 'sick'. Nausea, malaise, fatigue...none of these suffice.

What's the word for: "life has been drained from me" ?
 

gregh286

Senior Member
Messages
975
Location
Londonderry, Northern Ireland.
Honestly I am not holding out much hope....I saw Dr. Komaroff back in 2011 and he offered me nothing....didn't even do much testing. It is so very difficult to put into words what we feel when half the country complains about fatigue even though that isn't even the correct word for what I feel...I feel dead inside and drained of life along with unbelievable tiredness and zero energy.

@minkeygirl...I got my flu shot yesterday. So now am wondering if that is what crashed me. It never has before but who knows. I seriously had a relaxing..peaceful weekend. Nothing that would cause this today...ugh...ugh...

Awful.....I have a crash remedy works pretty ok.
Aspirin X 900mg. (couple time a day...normally 3X300mg tabs)
No food and drink very strong lemon water all day.(2 lemons per pint)
Lowers crash time dramatically from 3-4 day to 1.
Maybe not for everyone but helps me a lot.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Thanks to everyone who posted and gave me encouragement and tips....I am a little better today meaning not totally horizontal all day. I love posting here because I really don't have to explain what it feels like...you guys all know.

Luckily for me I don't have a lot of pain. I do have constant nerve pain in my calf but it is bearable and doesn't limit me in any way like the overwhelming draining...feel like I am about to die fatigue and exhaustion.

I always tell the doctors if fatigue could kill then I would have died long ago....

I saw a new PCP today and while he was awesome and listened he seemed totally stumped so is sending me off to some other doctor who is supposed to specialize in "wierd" and complicated illnesses. I don't hold out too much hope here either because he mentioned she does a lot with diet and nutrition.



@GG...yup we are back in NH...waiting on our house to be finished. What a crazy two years it has been.

@JAH...sox fan forever...now I can cheer on my Patriots!
 
Messages
1
Is there anyone that can help me? I have CFS and I'm having one of those nights where I'm too exhausted to breathe. I went to bed at 7.p.m, so exhausted that I could barely pull back my bed covers and slept lightly for a few hours and woke up almost unable to breathe, every breath a labour of burden. My lungs feel so heavy. I haven't the energy to breathe in and out. Its terrifying me.

So I crawled out of bed to get online to see if I could find some answers. This is not the first time I've had this. I dread it. It' s a living hell and I desperately want help.

Is there anything I can take, something natural before I go to bed or when I wake up to combat this problem? Even the slightest little help or suggestion would be most appreciated.

And is there any thing you could suggest as to what I can take to help me sleep? I've tried so many things which don't work or have the opposite effect but maybe there's something I haven't tried yet. Thank you.
 

lansbergen

Senior Member
Messages
2,512
Is there anything I can take

I k now the probelm but I think there is nothing that will help instantly. It likely is part of the disease process.
I had it very badly and it slowly improved over the years by trying to stay within my limits, avoid places with high infection pressure and take an immunemodulator.