Easily out of breath

[Murph]

http://slatestarcodex.com/2017/04/05/the-case-of-the-suffocating-woman/

Just was looking at this post which talks about another reason people can experience shortness of breath - panic attacks due to variations in carbon dioxide levels. What's interesting is the way variations in various hormones can affect carbon dioxide levels.

To be very clear, I am not saying that panic attacks explain shortness of breath in even a single case of ME/CFS. I just found it interesting.

 

[Wilderbessy]

This thread is very eerie. I just registered after being reluctant to join (I wanted to believe I didn't have a problem) because it's exactly my issue. I'm 24.

*Yawning pretty much all the time, can never get enough breath

*Spirometry score of 250-300 over a few months. Apparently this is my default. I was labeled as having mild asthma, but the problem is that inhalers don't help at all and it's on 99% of the time. I didn't even know I had asthma till a few months ago

*A fatigued, painful, and weak body, a lot of chest pressure. I feel sickly and sore in my face as well--also, I literally appear gaunt when I'm at my worst (despite amount of water intake)

*Also since I saw it mentioned here...my blood flow was noted to be poor by people taking my blood. And oddly my went from abnormally low to a little above average in a retest--it seems to bounce all over the place

People have suggested it is MCAS online several times now (mainly because for whatever reason Benadyrl sometimes helps me feel more awake/alive, but not always) as my symptoms always seem to come together. But I have gotten it tested and found nothing.

There was ONE day I had where all of my symptoms, including my asthma, were gone and I felt like I had woken up from a 24 year long nightmare. Clear head, feeling things that weren't pain, energetic. Thing is...I had spent all night talking to a friend, then slept at 7AM almost all day (rare for me). Woke up feeling brand new. The only other factor was how long it was since I last ate. I had never felt so good, not even after other hangouts. I felt my entire body keenly and it didn't feel like I had weird pressure or weakness all over the place. I could also breathe deeply for the first time ever. Sadly after sleeping again it went away.

Not sure what causes this at all. Maybe anxiety and stress gone out of control? I wish I knew. But I guess none of us do.

 

[SherDa]

How do they treat anemia of inflammation?

It is treated by reducing inflammation. I'm not sure how to elaborate on that. If the inflammation is caused by something like end-stage kidney disease, the inflammation will likely not be treatable.

Anemia is tricky. There are many different types, and sometimes iron levels are in the normal range, so simply testing iron will not always be diagnostic.

 

[frozenborderline]

http://slatestarcodex.com/2017/04/05/the-case-of-the-suffocating-woman/

Just was looking at this post which talks about another reason people can experience shortness of breath - panic attacks due to variations in carbon dioxide levels. What's interesting is the way variations in various hormones can affect carbon dioxide levels.

To be very clear, I am not saying that panic attacks explain shortness of breath in even a single case of ME/CFS. I just found it interesting.

people used to prescribe bag breathing for hyperventilation, and it should theoretically fix some cases of air hunger too

 

[Wolfcub]

There was ONE day I had where all of my symptoms, including my asthma, were gone and I felt like I had woken up from a 24 year long nightmare. Clear head, feeling things that weren't pain, energetic. Thing is...I had spent all night talking to a friend, then slept at 7AM almost all day (rare for me). Woke up feeling brand new. The only other factor was how long it was since I last ate. I had never felt so good, not even after other hangouts. I felt my entire body keenly and it didn't feel like I had weird pressure or weakness all over the place. I could also breathe deeply for the first time ever. Sadly after sleeping again it went away.

Not sure what causes this at all. Maybe anxiety and stress gone out of control? I wish I knew. But I guess none of us do.

I have strange things like this happen too @Wilderbessy
At the beginning of all this when I felt at my utmost worst I suddenly couldn't sleep all night, which I was certain was the last thing that should have happened. I expected to feel at death's door.
Well that next day after zero sleep, my appetite came back and I could eat properly, for the first time in about 4 weeks -three nice meals, and I could really taste and enjoy them. I felt tired but otherwise no symptoms. It was a different kind of "tiredness".
I felt normal again! Mental/emotional energy felt healthy and good.
But sure enough after a good sleep everything went back to square one.
We need the sleep though. But yes I have often found I actually feel better the night before rather than the morning when I wake up. Strange....I have never been able to understand it.

During this whole time I had two events which were like asthma. I never had in my life before. They haven't come back but I do get out of breath sometimes from what feels like sheer weariness. Like climbing even the slightest slopes in the ground. I never had that before either.

 

[perrier]

I notice some folks are on midodrine. What doses are folks on?

 

[Rebeccare]

I notice some folks are on midodrine. What doses are folks on?

I'm also curious! I take 2.5 mg 3x/day.

 

[lukesirde]

I believe Dr Myhill calls this 'cardiomyopathy secondary to mitochondrial malfunction'. This certainly fits the bill for me. There are other potential factors also and many of them can be driven by a pathogen or toxin. Keeping calm about it is easier said than done! It's a bloomin nightmare!

 

[Gingergrrl]

I notice some folks are on midodrine. What doses are folks on?

I just saw this question (only a few months delayed ) and I have been on many different dosing regimes of Midodrine since the end of 2014. At present, I take 2.5 mg 2-3x per day.

 

[perrier]

I just saw this question (only a few months delayed ) and I have been on many different dosing regimes of Midodrine since the end of 2014. At present, I take 2.5 mg 2-3x per day.

Thanks Gingergrrl; it was tried again for the umpteenth time, and again too many side effects.

 

[Gingergrrl]

Thanks Gingergrrl; it was tried again for the umpteenth time, and again too many side effects.

I'm sorry to hear this but the POTS meds are so tricky to find the right ones and I tried several that were epic disasters for me (but work well for others).