Help needed! Asthma or not?

[LarsPalmas]

Hi there,

I'm currently struggling with my health and need someone's insight.

It all started after undefined virus infection beginning of March 2020.

I had fever, sore throat, tight and burning chest, difficulties to breath and sleep.

The fever was gone after two and the half weeks but I never recovered to normal and it's been now five months.

Couldn't get the Covid test when the condition was active but antibody test done afterwards have been negative.

My age is 35 and I'm male who lived athlete lifestyle all my life, no cigarettes etc. and never had any allergies.

My symptoms are:

* Sore lungs (burning and stabbing pain goes from chest to back)

* Exhaling feels somehow restricted

* Occasional SOB

* Slight "phlegmy"

* Sleeping difficulties (never had this before) - waking to hypopnea? every night and even different sleeping medicines won't help

- In overall I feel really disabled all the time because of the persistent pain/breathing issues and the sleep deprivation has forced me to stop my active life.

Doctors findings so far (I have been two different Asthma docs multiple times)

* Silent chest

* No wheeze

* No cough

* PEF normal in two weeks follow up (590 - 620)

* No response to Salbumatol (doesn't change PEF numbers or help with symptoms)

* Negative methacoline challenge test (no bronchoconstriction)

* FeNo level normal (11)

* Spirometry normal but FEV% and PEF in low end (Fev1/VC 87%, PEF 76% - no response to Salbumatol) - (according to doctor the breathing technique could have affected the numbers)

* Cardiac stress test normal (12 min cycling, heart rate 185, no wheeze, but I felt exhaling was not normal)

* Heart ultrasound normal

* Chest X-Ray normal (taken two times)

* Bloodworks nomal (taken multiple times)

* Gastroscopy (loose LES and esophagus had some mild grey signs of GERD) - Two months of Esomeprazol, Gaviscon, inclined bed hasn't done anything.

* Trial 20 days of Flixotide didn't really do much

* Trial 20 days of Relvar ellipta 184/22 made my lungs even sorer

* Anxiety med Oxazepam has not helped to alleviate the symptoms

For next three months I'll be in Flixotide 2x250µg and then have another PEF follow up.

Can this be some sort of non-eosinophilic Asthma? Any thoughts?

[Js706]

Hey

I'm really sorry to hear that you're still struggling with ongoing symptoms! It does at least sound like your doctors have taken this seriously and really looked into it well for you.

From what you've said it doesn't sound a lot like asthma - normally with asthma you would expect a lot of variation in peak flow, response to salbutamol, reversibility on spirometry and a positive methacholine challenge test. As well as the fact that the preventative inhalers you've tried haven't helped at all.

Also with the silent chest finding - was it definitely a silent chest? And not just a clear one. Because a silent chest is something very different to that in which you're moving so little air that your breathing makes no noise at all when listened to with a stethoscope - and people with this are generally extremely unwell in hospital with it. (Just a point to make as I see a lot of people getting the two things mixed up).

There are lots of different things other than asthma that can cause shortness of breath - EmmaF91 did a really good post on some of them recently which may be worth a read for some ideas:

healthunlocked.com/asthmauk...

It may also be post-viral symptoms - which a lot of people seem to be suffering with at the moment! It can cause lots of ongoing problems with breathless, pain and fatigue etc and unfortunately there is very little known about it in terms of how long it lasts and how to help it. I think the main advice is to try to give yourself the time to recover whenever you're able to, as it sounds like you had a really rough couple of weeks back in March with it (and since!). AUK have a page on their website going into it a bit:

asthma.org.uk/advice/trigge...

The other really good thing to do is call the AUK nurses for a chat and some advice - they're really helpful and lovely to talk everything through with! (0300 222 5800 option 1, (M-F, 9-5))

[EmmaF91 Community Ambassador in reply to Js706]

AUK also have a Post COVID helpline that may help you - 0300 2225942!

Hope this helps

[AirIsUnderrated]

Other than age, gender and tests, I could have almost written your post myself. But I have had an improvement with Omeprazole and higher steroid inhaler dose combined. I have only had a chest x-ray and one set of blood tests but both were clear and normal. No raised eosinophils.

I got an appointment with a respiratory nurse last week (my first face-to-face appointment since all this started) who diagnosed asthma on the basis that the inhalers did help a bit and that my peak flow was lower in the morning than the evening. However she wasn't able to do spirometry, so I can't help feeling slightly sceptical of the diagnosis.

I never had any other typical heartburn symptoms but the burning feeling made the doctors consider silent reflux. Omeprazole 20mg twice a day has helped the burning, but it took both that and Qvar 50 3 puffs twice a day together to reduce the AWFUL, impossible-to-ignore feeling of 100 mosquito bites itching and inflaming my chest.

The other thing that doesn't add up to either silent reflux or asthma is that my chest symptoms are better at night, when both those conditions are said to be worse. How about you? My sleep is interrupted by peri-menopause symptoms anyway.

The doctors keep saying that this is probably post-viral and I need to be patient. It's hard to be patient when you're still miserable 4 months later, isn't it?

I'm in the UK. Where are you?

[LarsPalmas]

Hi,

Thanks for all of your answers!

I'm actually from Finland and therefore not under NHS care.

@Js706 I meant clear chest not the silent one. Thanks for correcting me.

@AirIsUnderrated Typically my symptoms are worse in the morning time and I don't know actually what wakes me up.

I have been three times in a polysomnography study and the findings were somewhat normal but I could only sleep 5 hours in three nights.

Sats were between 92 - 95.1%, no snoring, no sleep apnoea but had some hypopnea events (overly shallow breathing).

My Oura ring says that my sleep respitory rate has raised from 12,7/min to 13,6/min after I got this condition what I got.

There are certain things that are leaning me towards asthma in my case.

I feel that my breathing is better 6pm to 12pm and the morning is the worst even though there is no difference in the PEF figures.

I guess this is typical in asthma? I have read lot of posts from this forum that the PEF's don't go hand in hand with symptoms.

If I somehow manage to sleep full night (In my current case 6 hours) my lungs are feeling heavy when waking up.

During last five months period I have tried to come back to exercising but I realised that I couldn't as my lungs are so sore.

I have had these unexplained delayed episodes of severe chest pain and breathlessness after I have done pull ups that requires the valsalva maneuver.

The pain and SOB had come couple of hours later when pushing myself and lasted three days.

Looking back for those episodes (I didn't had PEF meter at the time) gets me wondering could the root of the problem be the air trapping.

Is this familiar to anyone?

I have been diagnosed years ago hypermobility of joints (so far haven't needed to do the genetic testing as it seems to be benign).

It seems that asthma is comorbidity of joint hypermobility syndrome (EDS).

(The most common comorbidities in patients with Ehlers-Danlos syndrome: a 15-year nationwide population-based cohort study)

tandfonline.com/doi/abs/10....

This situation is really getting into my head as there is no improvement in my condition...

[Poobah]

Hi Lars. I'm sorry that you are still struggling with the effects of the virus. From what you say, it doesn't sound like asthma. Have you had a scan of your lungs? X-ray doesn't pick up everything and a scan will be able to see if there has been any damage, like scarring. That would, at least confirm or rule out post viral lung damage.

A variety of viral infections can affect the lungs in different ways. Some affects are short term, some long term and some permanent. Radiology is the best way to closely examine the lungs. Can you get a referral for a scan and review by a consultant radiologist?

You say that you are slightly phlegmy. It is possible to get the phlegm lab tested (it will contain dead lung cells) so could show the state of your lung cells and help in diagnosis if there is lung disease. A saline nebuliser can help expel difficult and deep seated phlegm.

As for treatment, that will depend on what further tests reveal, but a specialist respiratory physio would help with your breathing stress.

Wishing you all the best.

[LarsPalmas]

Hi Poobah, Thanks for your reply!

Last time I saw my doc she said that the sputum induction test is not used/available in Finland (don't know was she right about this one).

Is the test done for every asthmatic in the UK and does the results also show neutrophil cell counts?

I have asked to get the CT done but the doc said that she didn't see any value for that because the two thorax x-rays were OK.

Just read about "best practices" of CT and it seems that the CT should be taken if there is some findings in x-ray or if patients clinical presentation let assume that there can be something.

Maybe I need to see a third pulmonologist? Got to say that I'm really exhausted for digging the cause.

I'm on waiting queue for esophageal 24-hour pH/impedance reflux monitoring but due to Corona the date is unknown.

Does anyone have experience about bronchoscopy? Could it have diagnostic value?

[Js706 in reply to LarsPalmas]

Induced sputum is used occasionally in the U.K. but normally only in specialist clinics - mainly to look for sputum eosinophils. It will show the neutrophils but at the moment I don’t think that really has much clinical use as neutrophils are normally the most abundant white blood cell in sputum. Poobah may also have just been talking about submitting a regular sputum sample to look for lingering infections etc.

A lot of Drs won’t want to do chest CTs with normal X rays unless there’s really good reason because a CT scan is a lot of radiation to expose someone to unnecessarily.

Again with bronchoscopy it isn’t used overly often in asthma, mainly in specialist clinics. Occasionally to take samples to look for eosinophils in the lung tissue. But more often to look for asthma mimics like vocal cord dysfunction I think.

[LarsPalmas in reply to Js706]

Thanks for your educated answer.

Basically the sputum sample offers little/none diagnostic value in my current situation where FeNO is normal?

So if I have 24/7 inflammation without eosinophils in my bronchial tubes the only way to find out is to wait until the tubes collapse and PEF drops?

[Js706 in reply to LarsPalmas]

I think in the future it will have more use, from when I’ve spoken to my consultant about it it seems like a test that they’re beginning to use more, so they don’t know tons about what different findings mean - aside from the fact that there can very occasionally be eosinophils present in the lungs that don’t make it into the blood (but it’s pretty rare).

It is possibly to have non inflammatory asthma but that would still cause asthma symptoms like decreased peak flow and changes on spirometry etc as the disease is essentially the same, it’s just the cellular cause that is different

[LarsPalmas in reply to Js706]

I guess it is not possible to have non inflammatory asthma with 24/7 burning/stabbing pain in the lungs?

[Js706 in reply to LarsPalmas]

I don’t know to be honest, only a respiratory/asthma specialist could answer that. Although asthma doesn’t normally cause pain or a burning sensation, just chest tightness. Burning pain in the chest is normally more associated with things like reflux I think. Or it could be a post-viral thing as that produces a lot of different symptoms

[LarsPalmas]

Condition update

There has been two things I would highlight in the past month when I've been using Flixotide.

Positive first, my sleeping has been better after starting the Flixotide. My sleep breathing rate per minute has steadily declined from 13.6 to 12.5 which has been my normal (source Oura ring). I've been able to stop sleeping meds zopiclone and oxazepam. Also when I lay down it does not feel that something is "shutting down my lungs" and the breathing is more effortless. I still feel exhausted but it might take some time to recover as I slept average three hours per night for three and a half months.

Then the setback, my kid went back to daycare after summer holidays and caught some sort of bacterial infection (runny nose). It took one week her to get over with it but then I caught it, but not in my nose as it went straight to the chest. I was having a chesty wet cough and bringed up green phlegm. I had clear nose, no fever and no difficulties to breath but my PEF went to 540 from 600+. When I coughed or laughed I sounded like one of my former colleague who had 50 pack-years of Marlboro. After four days of playing Marlboro man I started azithromycin which cleared the bacterial infection and week later my PEF is now back to 600+. Although I'm still huffing a little amount of phlegm couple of times a day. This is a first time in my 35 years that I remember having chest infection like that.

I talked to my doctor and asked is this sign of an Asthma and she just said that the chest infection has no diagnostic value.

Does this sound familiar to you who have been diagnosed with asthma?

Still my biggest symptom is sore and painful lungs 24/7. From chest to armpits and back. Is there anyone who has asthma and suffer from sore/painful lungs?