Breathlessness and air hunger in ME/CFS

I've seen the word air hunger used with respect to me/cfs, and I'm wondering how to tell if that's what I have. It feels difficult to get enough air, as if I'm taking half a breath instead of a whole one. I don't have mucus. It feels sore and tiring if I expand my lungs all the way.

I feel like if I sleep, I'll stop breathing from lack of energy, but that doesn't happen. (I'm not referring to sleep apnea.)

I'm not sure whether to go to the doctor or not, because I'm sure all my tests will be normal as usual, but it's disconcerting to feel a lack of oxygen. Can ketotifen cause this? Have any of you had this before? What were your symptoms?

 

Air hunger, for me is gasping for air, there is no noticeable restriction in ability to breathe, it's just breathing doesn't give enough air. It doesn't hurt, at least not unless it goes on for quite a while. Other people tended to notice it before I did, but then I'm not very observant

It is probably worth seeing a doctor and seeing if there is a conventional explanation for it.

 

@Wonko Do you do any treatment for your air hunger? I should try the doctor; I'm just afraid going out will make me worse. I'm trying to convince myself I don't need it

 

I have an inhaler but it doesn't help much. I just don't go out if the air temperature is too low, not really an air hunger issue, more a pain and difficulty getting enough air to keep my eyes from greying out. May sound similar symptoms but it's not the same as what I would describe as air hunger.

Air hunger, at least in my case, has always resolved itself - i.e. it hasn't ever killed me if I essentially ignore it. By ignore it I don't mean continue with a strenuous activity lol, I mean stop, relax, and don't worry about it. It's a PITA but not actually dangerous, whereas the above, similar sounding thing, that feels dangerous, getting insufficient air to run a couple of eyeballs - probably not good for me

So it's a judgment call on your part, if it's just a nuisance, that's one thing, but if it's more than that, and is worrying you, probably best to get the old lungs checked out.

 

My daughter has a feeling that " the air disn' t get all the way down". This is worse with PEM.
She had spirometry test at GP surgery which was not consistent enough to show anything - the practice nurse simply didn' t believe that she could not inhale/ exhale for a long enough period. No follow up proposed by GP.

As lymph nodes are swollen most of the time i wondered if it had anything to do with this, or with O2/ CO2 balance ( hyperventilation)

 

@hedgehog from my own experience of air hunger I can say it long predated Ketotifen use; Ketotifen had no effect on AH either way.

One thing that made it noticeably worse was GABA supplementation, although that came with other side effects for me. You might want to see if you are taking anything GABA-like, bc for me the side effects built over time from none to had-to-quit-GABA.

The air hunger I experience comes and goes, but I have not been able to track what is causing it (stopping GABA just stopped acute episodes of gasping AH along with tingling/burning in my mouth, arms and legs that would occurr 30 mins after taking.) Sorry if I'm not making sense. What I mean is maybe rule out any products that contain GABA just in case, but for me that was a separate AH issue.

Most helpful for me was that I purchased a lightly used 02 concentrator that I use with a nasal cannula at about 2.5lpm or less, for an hour or so. Too much isn't good either but an hour or so of supplemental oxygen makes me feel better, and more relaxed as well.

Hope this is helpful will be happy to clarify if I've been too rambly.

 

@Wonko Eyes graying out sounds pretty serious and seems like something would show up on a test in that case. Your description makes a clear contrast between the varying symptoms- thank you.

@Amw66 It stinks that the GP didn't suggest follow up with your daughter. That's been my experience some of the time as well. I thought about hyperventilation, too, but I haven't heard of hyperventilation lasting for extended periods such as days.

@Allele That's useful to know about the ketotifen, thanks! I'll have to look into the GABA part and 02 concentrators. I appreciate the ideas, and it was easy to understand!

 

I tried an inhaler, and it helps for a few minutes. I checked and am not taking any GABA substances. Does sitting up or lying down make a difference for any of you?

I think I’m panicking because it’s night and I can’t go to the doctor, plus feeling too sick to go. I have an appointment tomorrow with a doctor I’ve been to before that isn’t sure cfs exists and thinks I’m fine. (I told him I’m bedridden, and I went in a wheelchair, and he asked me how work is going and said, “but you’re good right?”).

I contacted my specialist days ago and didn’t receive an answer, so I assumed they thought it wasn’t serious. Perhaps they were out of the office though.

It feels like there’s no place for us to go when it comes down to it. Where should I go? The ER would find nothing wrong and discharge me. A specialist would take months to get a first appointment. My primary care doctor thinks I have ptsd and nothing else.

I just repeat to myself that I’ll be okay and make it through the night. Probably being afraid is exacerbating the problem. Sorry for venting.

-Edited for clarity

 

She could be right. I said my bottom lunglobs did not work end my upper lunglobs barely worked when I was at my worst.

The improvement process tells me I am very likely right. Lungs are being cleaned now.

I am pretty sure the lung problems are secondary to intracoastal muscle and pleura inflamation.

 

I have trouble breathing as well. It’s variable within the same day, week. My breaths are small as well, I breathe about twice as fast as a normal person, and breaths aren’t as deep.

I also have asthma, I’ve had it since my 20’s. I can differentiate between these two conditions easily. You can hear asthma when you exhale, you can hear this other problem when you inhale. I did a spirometry test in december, waiting for the results.

 

@ladycatlover thank you

@Dechi that’s so spot on- I have asthma as well and they’re distinctly different. Fingers crossed that your spirometry test results are helpful.

 

Thanks @Iansbergen. I had thought it might be related to swollen lymph nodes/ glands as she has these virtually all the time ( and there are some in lungs)?

 

Merged thread

Breathlessness has received a lot of attention lately in post Covid-19 patients and is also a symptom ME patients reports of together with air hunger.

But are we talking about the same phenomena and experiencing the same things? Both compared to post Covid-19 patients and within our patient group.

Do you have air hunger and/or breathlessness and how do you experience that symptom?

 

I'll start off with adding a new word into this; yawning.

In severe periods of my illness I've had frequent, long lasting yawning spells leaving me unable to talk. The yawning was quite extreme, and the sigh that usually accompanies a yawn was more like howling. The yawns were very long, something I was not in control of, and they could go on repeatedly for quite some time.

Once I had one of these "spells" when hospitalised and was able to measure the oxygen levels. They were 100%.

I'm in a better period now and no longer have these yawning spells, but yawning is still a sign of having overdone things.

I've never had the chance to discuss this with an ME clinician, and have always wondered if others experience the same and if this is how the ME symptom "air hunger" is to be understood and if others agree it's different from "breathlessness".

 

The only time I notice anything off with my breathing is sometimes I wake in the night and my mouth is open and very dry, as though I have been breathing through my mouth for a while?

I noticed that my nose isn’t blocked so I don’t know reasons for me to be breathing through my mouth.

I have never mentioned this to anybody

 

I have had spells where I became very breathless a lot more easily than usual. I tended to put it down to my underactive thyroid and/or anaemia.

However, there have been times when this has happened when, to the best of my knowledge, my thyroid hormone & iron levels are as good as they get.

It is possible it's a sign of PEM onset, but as I try not to trigger PEM I can't say for sure. It is possible.

Regarding the yawning and sighing. When I was first diagnosed hyperventilation was all the rage in ME circles. Yawning and sighing was often attributed to that. I'm not convinced about the whole hyperventilating thing but it might suggest that increased yawning or sighing was fairly commonly reported.

 

I think of my air hunger as a Lactic acid related symptom. My lungs feels like they did at the end of a sports competition before becoming ill.

 

I don't get this, except occasionally as a result of exertion, so normal, I think.