• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.


Senior Member
I thought a long time about posting this here bcs I doubt the relevance but I do so anyway. Maybe for some it may ring a bell. Or some maybe able to help me out as I found out on this forum are the best non-MD medics. ;)

* Because I sometimes have attacks of breathing difficulties (different types: like one "airpipe constricting - another one "not being able to breath deep and feel like air hungry making me gasp and move my shoulders to try to get air" and another one wheezing and everything I went to pulmonoligst.
My GP always told me this shortness of breath is due to your fatigue. But I clearly had exacerbations, only postponed it for years to go see a pulmonoligst.

Rx: emphysematic chest: flattened diaphragm both sides + bigger '...' space.
Doctor told me: everything is normal, but you get salbutamol. See me again in 6 months.

Lung function test I could notice the nurse didn't find it okay, she asked me to repeat and repeat, but nothing better came out:
After searching and searching I found out why: trying to breath out everything I just score within range for restrictive lung diseases (...). Also the way the graph constructs show restrictive lung disease.... Sth she probably hasn't seen a lot since I am 33 and never smoked a cigarette in my life.
Bronchodilatator increased everything a bit but it seems 12% is a cutoff point: <12% of improvement means restrictive lung disease, > 12% improvement means obstructive (asthma). Mine is just 12%. The doctor called it "minimal reversible" ...
As said: he told me everything was fine.

Keep in mind: I didn't tell him anything about my symptoms but I am used to quiet an array of lung symptoms all my life, since I had several lung infections: pneumomia's multiple times, atypical pneumonia and also pleuritis.
Often I feel one of them flaring again, than I rest and keep myself warm and that's it: they vanish. I felt diaphragma pain but never even googled it, though I was going mad. Also i have a lot of pain in the upper back then.
On this moment I was imho symptomfree.
Since I realised there are some very bad lung diseases out there and most people in the attending area were +65 yoa, I felt: what am i doing here? I am waisting there time, everything is normal.

So I went out, only to find myself in respiratory distress and a lot of pain weeks later.
Going online in my medical file I found in my X-ray he mentioning an emphysematic chest configuration.
Tough the conclusion was: possibly mild asthma (!).

I looked for all possible explanations online: bad posture? stress? hyperventilation? maybe I was born like this? but previous x-rays were different...

I will stop here for this part.

Does anyone recognise some of this symptoms or is anyone familiair with this?


Senior Member
Part 2

Why did I look into my own online file? I started to experience heavy symptoms and dyspnoe attacks and thorax pains all over the place and stiffness, esp at evenings, nights and mornings and night chills / sweats
Salbutamol is not relieving. I go to ER in fear don't know how I can get trough the night, they make another Xray there and pull blood: than de doctor comes to yell at me: there is nothing urgent, i am only here for life threatening diseases, i don't care what is on your x-ray if nothing is life threatening you are fine for me.
(I called the hospital and spoke another doctor who talked about admission since recently I was been diagnosed / suspected with lupus (if I see the tables for official diagnosis i should get the diagnosis even based on only objective measurements. Don't speak me even about what I feel and felt troughout the last decade!! He talked about admmission... )

Than I start reading and thinking::
- i have been having a dry cough for years, friends ask me "oh are you ill" (as if I have ever been healthy and a cold is a reason for worry ;) ) and I say "no i have this always".
- the diaphragmatic pains and upper back pains

I contact my GP: he says we can't do anything about it, just take good care for yourself.
Then I go back to a colleague of my normal GP at home: he calms me down and says it is because you are very slim but no way you have emphysema.
Another ER visit bcs of exacerbation when weather is hot outside and I can't breath out anymore almost. In the ER while waithing the symptoms clear up, which I tell them, till they do a routine lab and saturation and everything: I can leave, doctor says maybe a starting pneumonia? But reports: possible panic attack. :-/

Then my normal GP (but I went to a GP in training) says also I think there went something wrong with interpreting the Xray, maybe you inspired to deeply suggesting sth wich is not there. Happily he gave me some medication to inhale though it is very difficult to get into my lungs were it belongs.

You notice anytyhing -> all try to calm me, no one actuallly listens to the fact that I have currently symptoms I seek relieve for but the ER doctors nor the 2 first GP's gave me any medicine or checked on me if there was anything they could do for me. :-S As if by saying "i don't think you have emphysema" my symptoms were gone...

Then I see another pulmonologist (the 1st one means waiting to long) where all my hopes are on: i ask her what is the Xray with emphysema and what do my symptoms mean? Even she only focuses on the first question... I then tell her what I have been exposed too, and am being exposed to currently thinking this may help: she judges that I seem to be fearful for the world we live in. :-/ I can understand her, but I just mentioned this bcs I thought it might be relevant and help her diagnose me... she ordered a CT.
Something my GP did advise against, but I think for economic reasons he didn't want to prescribe me an MRI.

Here I am now, week 3 of having difficulty breathing, a very heavy chest as if it is filled with concrete that doesn't want to move smoothly and or the feeling that there is a shelf between my ribs in the back and the front and my lungs. I also feel like they are filled with ... dirt? pus? mucus? dirt again?... It also expands to my shoulders which are very painful, it is for sure also in the beneath/bottom of my lungs but it seems to be more and more everywhere. In the beginning of it i had some dry coughing, then some heavy coughing, even "wet coughing" but now there is nothing anymore, only pain, exhaustion, feelling silly ...

Must say that where I did live (and left to soon recently) they were constructing. I was supposed to live there for only 8 months so I thought don't bother all the dust coming from the iron, wood, concrete and sand and petrol gases from the heavy machines - though you could feel them very well in my room were I was studying all the time, since it is only a couple months and it won't matter in a lifetime.
Then a neighboor also started sewing in front of my door during the weekends: giving my lungs zero time to recover.
My hot water to get a shower broke so I had to be inventive and make use of not hottened enough water, I also had warm water vapor in my face bcs of bad handling of a garding hose while it was extremely hot outside.
So for god sakes it might even be legionella. I didn't even mention this to one doctor, they never asked me any kind of this exposure.

The harsh thing - making me want to scream and cry but I am too tired and weak to feel everything and even ready to knot yes for euthanasia - is realising now my lungs that apparently were not healthy at all on the 1st visit - suggestive for restrictive disease at my age????- are maybe getting damaged permanently because no one cares and they don't bother to help me while I really suffer and don't know how to get trough the day cause my body feels so heavy, and in my head i feel light like hell and I am irritable by anything bcs everything is too much...

The 2nd Rx (on the ER made by the angry doctor) didn't mention emphysema anymore but mentioned: "accentuated peribronchial lines/circumferences: smoker?"
I bought a saturation measure thing: sometimes it is 94-96%, on ER it was 96 on blood lab, sometimes it is 97-98 so I have no clue and I take acetylcysteïne 600 microg every day now. Still getting night sweat and heat attacks (for me prove of fever but my GP was not conviced).

Can someone tell me something about this or have some experience with this please?
So keep in mind: it can be your l ungs too...


Senior Member
Sorry you're having such a rubbish time with doctors! It's horrendous that people are dismissed like this.

I don't have any answers, except to ask if you've been tested for alpha1-antitrypsin deficiency. This is a genetic disease that can cause lung problems, but I don't know whether the symptoms align with yours exactly. If anyone else in your family has developed lung or liver trouble at an unexpectedly young age, it's worth asking to have your serum levels tested. It's a rare disease, so there are more likely possibilities underlying the problems, but if all the symptoms do look familiar, it's worth ruling out.


Senior Member
Thank you it is unbelieveable indeed because I am in such pain and no-one ever took the time to just listen to my symptoms, get trough them with me, check for explanations and help me for relieve. I really don't know what to do anymore. My Gp is to busy, ER will be too and it is now a chronic problem which makes it unsuitable for that.


Senior Member
We're almost one month later.

I tried the sea, now even the forest ... but as houses are heated here by burning wood or old fossil fuel installations, my problem isn't really disappearing.

Now the pattern is getting more clear and seems to make "cycli":
- stiff chest / difficulty expanding lungs upon awakening: happily not always the case
- upon air pollution: dry coughing, feeling of swelling throat wiht mucus built up and breathing trouble you can hear (wheezing and murmuring) esp because of traffic
- upon other air pollution : extremely burning sensation on the bottom of the lungs
- sometimes I wake up and do extremely have to cough, upon coughing you hear that something (mucus?) is replaced, but never coughed up
- before I had a dry cough

Since all my life I have been a burning throat very easily: meaning upon the slightest air pollution. The majority of my life I had this problem with my throat.
I guess if my lungs are made of the same tissue as the lining of my throat that burns like hell - and if that burning does mean harm is done - I am screwed...

Up untill today, my GP did prescribe me some things but they still think I just got crazy reading about the emphysema and then started imagining all kinds of symptoms and it is largely in my head, while I am at least having a completely increased asthma activity (while I never had this before...) that is out of control and is not getting apropiately taken care of ... : only urgency medication (salbutamol)

Taking acetylcysteïne kinds of drugs in the morning doesn't seem to do it, strangely enough it seems that only after stopping with those i get mucus coughed up. I don't know how this can be explained?

A CT is made, I will get the results soon...

Must say this pain and discomfort is realy really disabling which is extremely unpleasant especially since my fatigue finally vanished so I thought my life was going to start finally, after 34 yoa!!

I do notice this is not really part of CFS. I am not sure where it is part of? :-/