Baffled not sure what to think? Is it asthma or not?

[mylungshateme]

Hey hope your all as well as you can be and staying safe.

I will apologise in advance as I have so much floating around in my head not sure how it will come out... I've been putting off coming on here but I really need advice/ reassuring/humour/ or am I imagining my symptoms and need to get over it?

So post hospital D/C where I was for 5 days relvar changed to fostair 200/6 tiotropium, avyms, loratadine 10mg, Piriton 12mg a day prednisolone now 15mg (fluctuates between 10mg- 40mg since jan)as it's part of the problem and I need to come off it - agreed 🙂 so I asked for the plan of coming off? To be told "oh no you can't come off it as your in an acute episode ongoing" I asked if there was anything else other than pred I could take "no". Ok that's that one...

So while inpatient had ct chest and xray - told all fine 4 weeks previous also had chest xray in hot clinic again all clear. On D/C was spelt out to me I cannot work while symptoms uncontrolled and due to my job the risk of catching things from patients (I'm a nurse). So dr gave me a sick note - 2 weeks... well symptoms still the same no one has waved their magic wand at me... have asked gp for another sick note - guess what they cant as it was hospital that signed me off so they need to do a continuous one. I explained I've had to apply for ESA and PIP and if I don't get a sick note means no money. But hey nevermind.

While in hospital I was constantly tachycardic about 140+ loads of ecg's which were all over the place which is how I tried explaining I felt. Then the whole "are you anxious?" No , I just can't breathe properly you put me on a neb an my heart rate jumps out.

Then a consultant came and told me I have dysfunctional breathing disorder as well and gave me a leaflet...

Came home on 3rd sept. Spoke to resp nurse last fri I said I'm still struggling but I'm not convinced its dysfunctional breathing disorder she then said i was discussed again at mdt and my respiratory consultant has referred me on to severe asthma consultant as i don't have typical asthma symptoms with the not really wheezing but SOB and struggling up the stairs.

I said oh I thought I was waiting for biologics... she said it doesn't mean it won't happen but they need to check everything. I asked do I need to be worried there is something sinister as xray and scan was clear she replied " they only scanned one part of trachea not the other so can't be ruled out completely the consultant may request it" so slight shock in my head conversation with myself" wait omfg what does this mean I may have something sinister? Do I or dont i have asthma. I'm 37yrs old what's wrong with me or am I imagining symptoms that's why there is no cure?"

Ok back down to earth deep breathe 😂🤣 rational self "asthma is complex and it's because I'm not text book at least they are being thorough... " and I guess being under a severe asthma consultant is actually better than being under a general respiratory consultant?

And hospital missed both my antihistamine of my Ttas so gp wont repeat them anymore hospital have to. So I'm just buying them but money will run out!

Also asked for f2f gp appointment... you can guess the answer.

Oh and how do you get around prednisolone insomnia? I'm beyond exhausted 🥴.

Jesus that was a long waffle sorry but at least out of my lil head now haha. 🧘‍♀️😁🥰

[Troilus]

Hi mylungshateme,

You don’t go to the same hospital as me do you? 😁

As you know, I am fairly new to all of this, but hopefully those with far more experience than me will be along later.

You will possible remember from my outburst yesterday, that I too get breathless, and as Emma pointed out, this is part of asthma. ( While you are waiting for those that know, it might be worth reading Emma’s replies to me yesterday. Very informative, knowledgeable and helpful.)

What I can tell you for certain, due to my own quest, is that sinister things have a different pattern on spirometry. Asthma (and copd) have an obstructive pattern. Fev1 is usually reduced. FVC may be reduced or might be within the predicted range. Which is where the fev1/fvc ratio comes in. In asthma/ copd this tends to be reduced ie lower than it should be.

For restrictive diseases, both fev1 and fvc are reduced. So, although both results are lower than predicted it gives a normal fev1/fvc ratio.

As you have a diagnosis of, and are being treated for asthma, it is safe to assume your spirometry showed obstruction.

I must say, it was very nice of your kind nurse to give you such reassurance. ☹️

As for heart rate, go with your gut. It is well known that salbutomol can effect the heart rate, it says so on the tin, and as far as I know, this is what is used, or similar, in regular nebuliser. Your own experience tells you that this is what happens to you when you are nebuliser. So, I wouldn’t be inclined to worry, as my understanding is that this settles of its own accord.

Do you know the name of the sister that is in charge of your respiratory department? If you do, see if you can speak with her. Make your sick note and need for antihistamines an excuse for ringing her, and then just ask if she could clarify something for you.

Hang on in there. Asthma is a strange beast. You will tame it in the end.

[mylungshateme in reply to Troilus]

Thanks troilus, I reckon we are under same team... 🤣😂 the mind just boggles honestly. My heart rate increases when SOB obviously as my body is over compensating and increases further to ventolin like you say a known fact so why don't they seem to know these obvious things I just don't get it?

They just seem to contradict themselves all the time or make no sense at all and make me feel like I'm either stupid or a hypochondriac and this is why I end up doubting myself ignoring my symptoms and just carrying on until I ended up in hospital the other week and thanks to guidance and no nonsense talk from emma, twinkly and everyone else with far more experience than me. like you this is all new to me.

My gp practice just text me to say I have to buy my antihistamines... with what I'm not allowed to work and they won't give me a sick note? 😂🤣I've left a message with hospital respiratory team. Well I wasn't anxious before... haha... I must admit don't really understand the fev readings etc I'll research over weekend. 😁🤪 god I feel like a right moaning mini so sorry not normally like this.

[Troilus in reply to mylungshateme]

Stick with it mylungshateme. That is what I have taken away from my recent experiences. You know better than anyone how your body responds.

You don’t need to concern yourself too much with spirometry, but for me, understanding it helped me to get a better understanding of my condition, what with the copd thing going on.

Basically, fev1 is just how much you can blow out in one second, and fvc is how much you breath out in total. So, to put it a different way, fev1 is how much you breathe out in the first second of the test and fvc is how much you breathe out in the whole of the test.

These results change according to how well or unwell you are feeling. The better you are feeling, the higher both results are.

I’d better stop now. I’m starting to prattle! Must not be fully recovered form my now resolved ordeal.

Thank you for yesterday. Much appreciated.

[mylungshateme in reply to Troilus]

Ah I see. Well there must be something in the air with our "wobbles" 🤣😂. Well one of the respiratory nurses who saw me in hospital just returned my call she's already rang my gp and they will do sick note and apparently they make everyone buy antihistamines now as cheaper over counter.

And then something happened which doesn't very often I burst into tears! She was reassuring and read my lung scan reports out to me - basically no concerns no mass or nodules or lymph nodes. 😁😁😁. Shes reassured me that things will get better an I will get my quality of life back and said shes not surprised i feel blah. So between you and her i feel better so thanks! 🙂 what a rollercoaster this breathing game is. And she advised the usual if get worse ring 111 tonight and ring gp mon for phone appointment. Just looked at news Bristol area is highest r rate in uk that's it I'm taking myself back in to shielding taking no chances!!! My lungs hate me as it is without flu or corona! 😬😬😬🤪 thanks again lovely.

[Troilus in reply to mylungshateme]

Oh I am so pleased for you! It is so frightening when people shove things into your head that have no business being there. I can well understand the tears. Plain good old fashioned relief! Just don’t go making a habit of it. Tears and asthma are a bad mix 😁

I’m also in a high risk, restriction area, which was one of the reasons I was so annoyed about my hospital visit; one of the many!

Anyway all sorted now.

I have also gone back to shielding. Just common sense really. I don’t need to wait until I am told.

Good luck with everything. Here’s hoping they get you sorted out soon.

[mylungshateme in reply to Troilus]

Fortunately my tears last about 2 seconds then I'm done 😂🤣. But yea the two dont go. Yea I'm not waiting on government guidelines they're priority is economy not lives anyway (just my opinion sorry if offended anyone) well one day we will laugh about all this. Stay safe.

[Poobah]

I'm so sorry you're having such a horrible time of it. The bit about the GP and the sick note really is nonsense. I've just read the government stuff about fit notes and their advice to GPs (just in case there new rules). The GP can issue a further fit note once they've read the hospital letter to the GP. So either the GP hasn't read the letter or the hospital hasn't sent one (unlikely).

Definitely have a chat with the hospital about this. If they don't want to issue a further fit note then ask for a copy of the letter sent to your GP (I always get one automatically).

My GP has never refused to write a fit note for me after hospital treatment and because of the hospital report my various GPs have never asked to see me either - my extensive records are witness enough.

Good luck.

[mylungshateme in reply to Poobah]

Thanks poobah, I swear people are just making up guidelines now as do short staffed. I get staff are in shielding, off sick, on leave and doing the job of 5 but it's no excuse to fob patients off. Sometimes you just feel like theres unnecessary obstacles that don't need to be there especially when you feel your losing control of your life. As my 2 yr old says "oh well" 🤣😂😁

[madonbrew]

Hello mylungshateme,

Firstly, a hug for you 🤗

Secondly I have nothing helpful to say , but I too am needing a sick/fit note from my GP to claim esa...have telephone appointment on Friday with them so we’ll see! I’m sure your GP can do you one!

Oh and my consultant who keeps getting rid of me has said I have dysfunctional breathing too...whatever that might be?!

Sorry you’re having a rubbish time! Hopefully your asthma consultant will help get you sorted!

Love from Dee x

[mylungshateme in reply to madonbrew]

Hey Dee, thanks for your reply and hug. 😁 gosh its draining isn't it some days?! Got lung function again and hyperventilation test tomorrow - should be fun... I'm more worried about walking from car park to department haha nearly finished me off last time 😂🤣. ESA really isn't much is it although I think theres 2 amounts, i read the lower one while they assess I believe? theres so much to having severe asthma isn't there it literally impacts every aspect of your life.

Re dysfunctional breathing disorder - I feel if, and it's just my opinion entirely if you don't fit in the typical asthma box they seem to try and label you with anxiety and or dysfunctional breathing disorder... but actually don't help or support you with that latest edition of comorbidities 🤣😂 but my understand which is limited, is, its brought on after being unwell and your body has had to learn to breathe in different way but not always the best way, also can be down to anxiety. There are breathing exercises and physio available for it. I think? Were complex people us sevete asthmatics so drs keep telling me... 😁👀x