Discouraged and in need of some Steve bashing

I mean the snake, not any members called Steve.

Actually I am tempted just to dissolve. Maybe I have PMS or something but I am feeling so discouraged and fed up.

2nd cons appt. He still takes his time to answer questions and does actually listen...so an improvement. He thinks on balance I do probably have asthma though it's also possible I don't.

Problem is, my symptoms do not match up with PF apparently...so I have mild asthma at most? But the annoying symptoms are from 'abnormal awareness' of breathing. And he doesn't know what to do about that. Spirometry this morning a bit pants but that is probably just me with my 'amazing technique' again - tech said lower than last time.

Next appt in 3 months...and meanwhile take Symbicort - highest dose. If that doesn't work (and it didn't before but I may not have given it long enough either time) then he says unlikely to be asthma...and fact that pred didn't work also works against asthma. He has never seen anyone with steroid resistant asthma though admits it is a possibility, but a very unlikely one.

Obviously I'm crossing my fingers the Symbicort works but even if it does it will take a while. And meanwhile, I have Steve etc constantly bothering me and apparently no way to do anything about it, because it's not actually asthma causing most of it!

Really feel like crawling into a hole sometimes. I know many of you have it so much worse and I'm glad it's not severe but when I'm getting the symptoms and it's keeping me awake, knowing that it's probably in my head doesn't really help. Also, why the hell is it in my head anyway? I just can't work out why I would have ended up here and how it has somehow managed to take over my life. Been told not to think about the symptoms too much and I do try not to, but they have a habit of interrupting things!

Aaargghhh...sorry for rant but I do feel so discouraged and fed up right now and like no end in sight. Glad I am still seeing the RBH but tbh I expect they will just say the same. Feel like I am a major basket case lol if my head is causing all this!

10 Replies

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  • Hi Philomela

    Sorry you're feeling so discouraged. I find it a bit strange that your consultant has never met anyone with steroid resistant asthma as there is plenty online about this. From what I have heard on here I would hope for much better from the RBH. I might actually find out for myself as I am going up there next month (was due to be next week, but got cancelled!!!!) Keep your hopes up as this must be a very confusing time for you, but you will get there in the end. Best Wishes.

  • Arghhh poor u philomela u must be sooooo fed up!!!

    I would say don't give up, u know its noy all in your head qnd just cos the cons are confused doesn't mean you're wrong and they're right!!

    From everything I've heard about the RBH I would def say wait until your appointment, they arr truly experts in their field and I know from experience with my little boy that after a year and a half of constant vomiting, pain, stunted growth and other bits we finally got fed up and paid to seen by an amazing cons in gosh who knew within no time what was wrong with my little boy because he sees the 'don't fall into a pigeon hole box'.

    Take care

    X

  • Thanks guys! I am hoping the RBH takes a fresh look at things.

    I guess the reason I am discouraged is that I've had 2 crappy consultants before who really didn't listen, but this one is very good, last appt went well and he does listen and really knows his stuff. So am thinking if he's saying this then how can it not be the case, as I can""t say as with the others that he jus doesn't know or is not bothering to think outside the box, because he is good on stuff like no wheeze doesn't mean no asthma etc.

    He's not saying all in my head...but is saying that at my PF levels I should have no or mild symptoms...even taking into account my personal best etc, so the fact that I do get the symptoms so much can't really be the asthma? Except have heard about small airway involvement but didn't ask about that. He did say if the readings were accurate this is the case...and I did point out that it was practically impossible to find a time when I hadn't been having reliever.

    Also think he said re the steroids thing that he'd not seen anyone that steroids didn't help, but he definitely knows about steroid resistant asthma of course. Shouldn't have said theoretical possibility, more very unlikely.

    Just feel like it's my head that's screwed up, for no reason that I can see, and also that I can't trust symptoms.

  • Really sorry to hear this Philomela. Can't really offer any advice, but just wondered after reading your posts whether you could try going a few days without reliever (except possibly before bed so you can sleep) so that you could gather better peak flow evidence? I do understand that you would feel awful for a little while, but might it be worth it to prove that it really is asthma? Have you already tried taking peak flow before using reliever and then again after so that they have evidence of reversibility?

    I really don't see how it's possible for constant breathlessness to be only in your head. Sometimes I become aware that I am overreacting to mild symptoms and making them worse, usually when I've taken ventolin and still feel breathless, and if I distract myself at that point I forget about it and it goes away. However, there was a physical cause to begin with which caused me to overthink my breathing.

    Recently it's become apparent to me that the reason I had such persistent symptoms last year, not responding to loads of ventolin etc, despite ok peak flow, was that so much inflammation had built up before I actually saw my GP. It took loads of different steroid inhalers and two courses of pred before this finally subsided and gave me any kind of control. It sounds to me as if your lungs are inflamed and because you don't respond to steroids it masks your response to reliever as well. Obviously not an expert but this is how it appears to me.

  • Thanks for reply! Yeah he did say all the reliever might actually be making it worse...but then I can't win lol! I did have some readings pre and post but might try again. Sometimes it shoots the PF way up but doesn't affect the symptoms, but there have been recent times when the reliever hasn't raised the PF which seems odd.

    My PF in general has never seemed to be a very accurate measure though he did say it was variable which suggests asthma, just that I shouldn't be getting these symptoms at that level. Basically he said although there is asthma most of the symptoms are probably not the asthma because they are out of proportion with the actual severity.

    Think I rambled a bit and failed to say triggers when there probably are at least some. And I do have high IgE...so something going on there! Think he is going for the long view and not giving up one which is good but when I am struggling to breathe in the evenings this does not help.

  • re the possibility of small airways involvement

    Hi,

    have you tried doing your PF on a PIKO 1 meter, it measures both the peak plow and Fev1, the FEv1 shows more about the smaller airways, so if your PF remains ok, but your FEV1 drops, only the smaller airways involved.

    worth a thought,

    good luck,

    g x

  • Thanks George! I actually ordered one of those recently for this very reason, but it seems a bit screwed up...doesn't provide sensible readings for either PF or FEV1. The manufacturer was meant to ring me back but they haven't, better chase.

    The LF tech did comment my spirometry readings were worse than last time today and was I feeling worse (which I was) but knowing my terrible track record at doing these tests I can't read much into that! Though I used to be better...have got worse with practice lol and as the readings go down.

  • Just a thought but if your IgE is high have you tried taking a daily antihistamine just in case it helps?

  • I can understand your frustration (I'm a similarly 'non-standard' asthmatic!), but you know your body better than anyone and you know there's something not right. Whether its asthma or something else, they need to get to the bottom of things for you and treat it, because it's impacting on your daily life.

  • Thanks spookymilo, might try that!

    BooBoo - so right though really do think it's asthma and he is leaning towards that atm. But I just cannot get them to understand about the symptoms it seems. This cons is way better than the others and does listen but he still told me to 'go and get on with your life and try to ignore the symptoms, see you in 3 months.' When I raise how much it bothers me every day and also how annoying the strange dizzy thing is they always seem to think I'm having some kind of hypochondriac panic that I have some deadly illness or something new wrong with me...I'm not, I just find the symptoms really get in the way!

    ughh rant rant rant...sorry everyone.

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