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An Alarming Symptom

belize44

Senior Member
Messages
1,660
Last weekend and yesterday, I started experiencing my usual post-exertional fatigue, accompanied by extreme shortness of breath. I almost felt as if I needed oxygen. Has anyone else had this symptom? I couldn't even talk on the telephone! I tried laying on my side as opposed to laying on my back, which helped slightly. :confused:
 

Deatheye

Senior Member
Messages
161
I got a few times that I suddenly started to extreemly sweat, nausea and a few seconds to minuts later loss of motoric control. Collapsed and coudn't move anything anymore. At one point that happened while sitting. So I wasn't able anymore to lay down. Then My breathing stopped and headaches from having not enough oxygen started. WGot worser till I started to see pictures of familiy, friends, and started to feel like I would fall asleep.

Not beeing able to talk or at least not loud enough that anyone understands me is something pretty normal for me.
 

belize44

Senior Member
Messages
1,660
I got a few times that I suddenly started to extreemly sweat, nausea and a few seconds to minuts later loss of motoric control. Collapsed and coudn't move anything anymore. At one point that happened while sitting. So I wasn't able anymore to lay down. Then My breathing stopped and headaches from having not enough oxygen started. WGot worser till I started to see pictures of familiy, friends, and started to feel like I would fall asleep.

Not beeing able to talk or at least not loud enough that anyone understands me is something pretty normal for me.
That's awful! I have had this happen a few times, come to think of it, but not very often. I even wondered if it was a cardiac event.
 
Messages
6
I had some shortness of breath very consistently, and the intense bouts for a while, and it's awful. I think probably the scariest symptom of them all. Thankfully for me, the really extreme lack of air stuck around for a phase and then disappeared, like so many of the random symptoms seem to but I was scared out of my mind for some nights in there. I have no idea what's happening at those times, but I'm sure it's something big. I'm so sorry you're dealing with that. Hope that it is only a very temporary thing for you.
 

belize44

Senior Member
Messages
1,660
I had some shortness of breath very consistently, and the intense bouts for a while, and it's awful. I think probably the scariest symptom of them all. Thankfully for me, the really extreme lack of air stuck around for a phase and then disappeared, like so many of the random symptoms seem to but I was scared out of my mind for some nights in there. I have no idea what's happening at those times, but I'm sure it's something big. I'm so sorry you're dealing with that. Hope that it is only a very temporary thing for you.
I hope so too! I was thinking of buying one of those pulse/oxygen things so that I can monitor this.
 
Messages
18
Location
USA
Don't want to scare you, but I had this happen after I developed ME and thought it was just my ME flaring or maybe an asthma attack happening for the first time. It worsened in me and turned out to be massive pulmonary embolisms. Very scary - you may want to get that checked out.
 

L'engle

moogle
Messages
3,187
Location
Canada
I agree with EverHopeful that you want to rule out pulmonary embolisms. The symptoms with that, from what I've heard, can feel quite similar to the weakness and breathlessness of ME. My father has had pulmonary embolisms and has to take warforin. He had extreme out of breathlessness and weakness and went to the hospital, where he found out it was an embolism. So he understands, unfortunately, what some of the very worst ME symptoms feel like, though he doesn't have ME.

I really hope you don't have pulmonary embolisms. For my breathlessness with ME, which has never been as severe as what you've described, I've used a home oxygen concentrator with some success. I got one second hand online (craigslist) but if you could find a doctor who would let you try that might be an option. I've started the B12 protocol that is talked about on this forum and my breathlessness has gotten better but is still sometimes there and worse with exertion.

I really hope you can find a way to get your breath properly as this is such a disturbing symptom. Take care.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Its often called "air hunger" in ME and I agree with what another poster said, it has to be one of the most scariest symptoms of ME (the only other ME symptom I find just as scary is finding oneself has lost body control and is completely paralysed).

Air hunger to me feels like my very cells cant get enough oxygen and like im suffocating. I can breath but its like I still cant get enough air, taking deeper breaths doesnt help. Fortunately Ive only had that a couple of times.. once at christmas when I'd overdone it by peeling the families potatoes... I ended up in bed, not wanting to ruin my families christmas as I was worried I was going to die as I couldnt get enough oxygen (if it wasnt for christmas I would of asked to be taken to hospital for oxygen).

In my case changing my bodies position didnt help any. Nothing seemed to help it.
 

AndrewB

Senior Member
Messages
119
Location
England, UK
I get this a lot, mainly during extreme relapse bouts, of which im having at the moment. So far this one's lasted since the start of june.
If you have an electric fan i find that helps in terms of having cooler air in doors.
Also, sipping a cold drink can help.;)
 

belize44

Senior Member
Messages
1,660
Air hunger. I have heard this before, and now realize that this has also happened before! Except not so severe. Sometimes it happens just I am falling asleep, and scares me because it doesn't feel like dozing off, but dying! and I keep jerking myself awake in alarm which doesn't help. I think I am going to buy a pulse-oximeter.
 
Messages
15,786
I've had to sleep on my left side (or my stomach) for quite a while now to avoid the suffocating sensation while sleeping. I've also noted than certain postures (leaning forward while sitting up) can trigger palpitations, and a similar feeling.
 

belize44

Senior Member
Messages
1,660
I have also noticed that my neighbors are doing a lot of entertaining, and their guests like to sit on the porch and smoke. Since the weather has been very hot and humid, the second hand smoke hangs around and eventually permeates my walls. I have never been able to tolerate second hand smoke; it's gotten worse with this illness. I get hoarse, and start having to cough.
 
Messages
20
Location
St. Louis, MO
I agree that this is a very frightening symptom and I had it a lot several years ago. Aside from the flu-like fatigue, it was my major symptom for a couple of years. Luckily, it only occurs on rare occasions now and since I know what it is, I don't panic which, of course, only exacerbates the problem. I thought for a long time it was related to LPR (silent reflux) but now I don't think so. Just another unfortunate symptom of CFS.