ASTHMA controlled at mo but VERY breathless. Drs now saying its DECONDTIONING

ASTHMA controlled at mo but VERY breathless. Drs now saying its DECONDTIONING

Hi! I wonder if anyone is in a similar situation. As Dr described to another, I had sudden onset of difficult Asthma with dramatic deterioration. I'm only 53, and it commenced out of the blue, back in 2009. (It is also highly likely I have Churg Strauss Syndrome, and am being treated for it) I was forced to take I'll Health Retirement & have had many emergency hospital admissions over the last few years. Since starting Mycofenalate Mofetil, together with Pred & a plethora of inhalers, nebs & inhalers, the Asthma is "delicately stable".

However, my breathlessness continues, and is severe, at the slightest exertion. It is very different from Asthma breathlessness, I am not wheezy, but still pretty much gasping in minutes. Rescue Pred doses & nebs have no effect..My Consultant did loads of tests, checking me for Heart Failure , Pulmonary Embolism (& cardio pulmonary Exercise Test too,) which thankfully was not the case. He & my Area Consultant in Sou (I'm in Jersey) have now decided my severe breathlessness is down to DECONDITIONING. True, I have become frail over the last 5yrs, but since commencing Resp Rehab classes & much slow but daily work in my garden, I feel much stronger, but the severe breathlessness is totally unchanged, 6months later. (Resp rehab re monitoring showed an increase in fitness of 50% which is fantastic) this continual severe breathlessness is depressing. Will it ever improve?? Could it be COPD or similar, not asthmatic??

Would be grateful for any ideas

(I am not allergic to my beloved cats.

Sorry RORY is upside down!!)

38 Replies

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  • Have you been tested for COPD ?

    I've just read up on the Churge thing and it says it can affect the lungs.

    What do they mean by " deconditioning " ?

  • I had problems with deconditioning the year before I got my diagnosis this February. Because I had got breathless whenever I exerted myself, I stopped doing anything needing an effort as I was fearful I was doing damage to myself. So my muscles and my lung function all went downhill from not doing very much. The diagnosis and going to PR helped me find my limits, which are much higher than I had thought, as long as I'm careful. So now I'm walking much further and riding my trike again. Muscles need to do work to keep up fitness.

    Hope this explains it for you, Puff.

  • I'm glad your moving. That's the problem for some that they don't keep active.

    Use it or lose it.

  • Hi Puff! (Great name!) I guess they mean general weakness, but the exercise over months has had no effect whatsoever,mwhich is upsetting. I'm very laid back about my condition after awful things in my life I'm past caring, so it's no way due to panic, over breathing etc.. but when they say I will improve but I get WORSE.. I found my own Churg diagnosis thru Mystery diseases on sky prog. New consultant turns out to be an authority on it. Numerous scans, x Rays, bloods, biopsy, broncoscopies, & looks pretty certain but they can't obtain the final biopsy required, but EVERYTHING ties in for this diagnosis.. But altho this is controlled, this severe breathlessness continues regardless. Disappointing is one way to put it..

  • Hi and welcome. Does deconditioning mean that you are out of condition because you have not been able to exercise as much as you used to.

    I have asthma/COPD, and I think I understand the breathlessness you feel when exert yourself....it's a chest tightness.

    I have problems with certain medications, so I try in the first instance to control my breathing with the pursed lip technique before I use a rescue inhaler. I also try and breathe gently through my nose only to filter and warm the air...belly breathing rather than panicky upper chest breathing...easier said than done but I find it does help..

    You may be hyperventilating, I have been trying the Buteyko Breathing exercises again, but they are not suitable for everyone as they cause a big surge in carbon dioxide. I find they do work in the long term, but I keep on getting chest infections which slow me down.

    PS your cat is lovely....many cat lovers on this site. I am fine with cats but two of my daughters are allergic to them sadly.

  • Hi Knitter!

    Thanks so much for your support.. It's this kind of thing that gets you thru.. I live alone & v isolated as its such a struggle to even get out the door, let alone then be able to do anything. The breathlessness is definitely not overbreathing, hyperventilating, shallow, or panic.. I'm calm & concentrate on my breaths but nothing helps. Please tell me more about these breathing techniques. I definitely got very weak, but feel I am much stronger since all these exercises, & work in the garden, but the breathlessness is maybe even worse.. Not fair!!

    But RORY, & big bro Mikey, Mum Ruby & monster BJ, my beloved family of cats, are a great distraction and bring me much happiness..

    I just feel so old, before my time.. So hard to take..

  • Hi again, you can find the pursed lip breathing on you tube.

    Buteyko Breathing is based on the idea of " hidden hyperventilation" not the obvious gasping over breathing , ...you can find belly breathing with a relaxed diaphragm on you tube too.

    Take care,

  • Ta so much. I will look it up. I'm willing to give anything a try.. ..apart from Faith Healing..

  • Hi, I am wondering if the Severe Asthma has caused scarring in your lungs which is also known as fixed lung obstruction, and therefore falls under the same category as COPD now? So you may have severe asthma with an element of COPD.

    This is what I have, and I also was medically retired at the age of 53, though I have had severe Asthma all my life. I don't know about the other condition you mentioned, I will look it up later. The breathlessness for me has also got worse in the past 6 months, though easier now. I also find it a struggle to come to terms with it all, but the upside. Is the people on this site are great, and a lot more knowledgeable than me regarding COPD. They will keep you smiling and be there for you whenever you wish to talk. I live in Cambridgeshire. Are you in regular contact with the Community Respiratory Team?

    You are doing the right thing by keeping active, pacing yourself, giving yourself permission to some tendor loving care when the breathlessness gets frustrating.

  • Hi WheezyAnne!

    I know the consultant said my x Rays show signs of Asthma disease.. (Wow, that was fast.. 2 yrs after diagnosis) I will ask him about this possibility of scarring having an effect. He's very approachable & explains the scan results & tests so he's in for another big quizzing in a fortnight!!.. I hear from my Resp nurse once every few months, but it's so hard. I don't want to be always moaning., My dear friend has Obliterative Bronchiolitis but was am eminent Psycologist. She is the only person who truly understands how I feel, and has taught me to focus on what I CAN do, not what I cant, and that every thing I manage, however small, is an ACHIEVMENT.. Bless, you TINA..

    Also, that at I'm grieving for the life I had, which is now over..

  • I would be asking for a spirometer test. It only takes a minute or two, is easy and simple to perform and will let both you and your docs know whether or not there is any COPD.

  • Hi Toci!

    I've had numerous Lung Function tests, & do Peak Flow readings daily. When Asthma has been at its worst, it's been a shocking 90, but it's at my best ever at 250 but I'm still truly gasping, having to stop to rest, struggling to stay standing.., What's going on?? You see my concerns..

    Thanks for your support..

  • Rory is lovely whichever way up he is!

  • Oh you haven't seen monster BJ, .. Or Mikey, or mummy Ruby!!

    They are my delight..

  • Ooooh, I can't wait to see their pic's, I only have one furry friend now but I don't know how to put her pic' up 😸

  • I don't know how to get theirs on either!! It was an option with the initial posting. Anyone know?

    IF.... you want more gorgeous cat pics!!

  • I can't really add to the great replies you've had but just wanted to wish you better asap - your symptoms sound really hard to deal with. Healing wishes.

  • Oh O2 Trees, that's so kind..feels like a warm hug, which helps so much.

    Thank you!

  • Low iron can also cause breathlessness.

    Hubby who has Asthma, now has a different type of breathlessness recently along with tiredness, muscle weakness and losing weight, (he also 'sighs' a lot,) we are trying to get to the bottom of it all.

    Doctor has done an xray on his chest, prescribed an angina spray for suspected angina (due to his breathlessness,) then sent him for an ECG for his chest and is off to see a Cardiologist. He has not collected the angina spray yet as we don't know for sure if he actually has angina.

    A member on my Thyroid Uk site on Health Unlocked asked if Doctor had checked Hubby's iron, ferritin (stored iron) and follate blood levels as low iron can cause breathlessness and fatigue. She said If iron is low, then oxygen in the body is also low. Red blood cells need iron to which iron adheres then oxygen is transported to every cell in the body.

    LOW iron = LOW oxygen.

    We have bought Hubby a finger prick, home blood testing kit, to self check his iron and ferritin levels.

    Not saying low iron applies to you Sparkimoore,, but just to say low iron can be another pointer to breathlessness.

  • Hi Coastwalker!

    Funnily enough, I had very low iron levels, & so was anaemic last October.. Turns out its a side effect of this toxic Myofenalate (but it's the only drug that has controlled the Asthma attacks, so altho it has a plethora of nasty side effects inc kidney & liver damage,they are reluctant to change it., I have fortnightly bloods to keep a check on all this ESP as kidney function is borderline since taking it..) I was put in iron pills, which brought up the levels, but the breathlessness is unchanged. I had pulmonary angiogram, heart echo & ECT.. really to see if Churg has attacked my heart.. But thankfully all was normal.. But this severe breathlessness continues.. So hard to cope with. I try to look after my 89yr old Mum, who is sprightly & well, but she ends up looking after me, as I can't cope with the basics..

    Thank you all for your comments and support..

    It really helps

  • Hi again Sparkiemoore, bit of a long shot, but breathlessness is also a symptom of Hypothyroidism, my Hubby also has low thyroid (low within range,) have you had your thyroid bloods done ?

  • Hi Coastwalker!

    I will certainly ask my Consultant about that one. I think I had it checked years ago but not since I got sick.

    Thanks for caring..

  • Ask your consultant for a printout of your previous thyroid blood results and their ranges Sparkimore and pop them up on Thyroid UK to get them checked.

    Many undiagnosed thyroidy's are told they do not have a thyroid problem as their thyroid bloods are 'within range', so they are told they are 'fine' or 'all OK, nothing wrong with them, yet many do have thyroid problems and are being missed or overlooked by Doctors who only look at thyroid problems that are out of range. Not saying you have a thyroid problem, but breathlessness is a symptom of hypothyridism and also a symptom of Low Iron, I'd also be inclined to get my iron levels checked again Sparkimoore if I were in your shoes.

  • Thanks very much, I certainly will. My Consultant keeps a close eye on fortnightly bloods as its the Mycofenalate that is causing the anaemia. He takes me thru the figs too,mwhich is good. I know it was up to 11 when I saw him last on 15 Aug.

    Many thanks for your ideas of things to check out!

    Take care

  • Have they checked your chest x ray for diaphragm position? I only say this as I was perfectly healthy until I was 62 then became breathless. I too had to retire from my job. After a huge amount of tests it was finally diagnosed as a paralysed diaphragm from having Shingles very badly. It was in the 'up' position so one lung not functioning. I had an operation but am still quite breathless and they also confirmed I have asthma and hypoxemia when I lay down. Now on LT oxygen therapy at night and asthma meds.

    Hope they can sort it out for you. I went to Royal Brompton And they left no stone unturned.

  • Hi Angel150!

    I will ask Dr Amar about Diaphragm position. He's very thorough & has left no stone unturned and has done far more for me here in Jersey than my area Hospital in Southampton have even considered, tho he started as Resp consultant 2yrs after my referral to them..I did ask to be referred to Brompton, but he said as I'm not asthmatic at the mo, & likely to be DECONDITIONING, there's nothing for them to work with.. I can insist, so I will have a deep conversation about THE LOT when I see him in a fortnight..,

    Everyone's ideas are being noted for a big list of questions!!

    Thank you for your support

  • Without wishing to doubt with your doctors are saying I am not happy with this deconditioning idea. I was told my breathlessness was deconditioning: i.e. blame the patient. I mentioned this to a friend in the village, he completely blew his top. "Tell them to come to the village and ask anyone what you were up to when you came home from hospital. It was horrendous, we could hear you coming all the way down the hill, you look like death, stopping to get your breath back every few yards, coughing blood, would never accept a lift home and you went on doing this every day for months and months."

    So...

    Take care, listen to what your body is saying: you are the expert.

    Love

    K xxx

  • It's horrible when you get breathless when you do something , I can sympathise with you I have copd and asthma so they are trying me on xolair injections so I have every thing crossed it helps me chin up x

  • Hi Marian b

    I've heard xolair is very good. I heard about it in 2009 when first diagnosed but the then consultant said oh that costs £10,000/yr., Far too expensive to even try..! I'm glad to say, he's now gone.. I was recently discussing its possibilities with my new lovely consultant, but he said its sadly NOT suitable for me, but is very good for a small criteria of people. MEPOLIZOMAB is in the final stages of drug trials, and should be available in the next yr to 18months, so we're holding out for that as a possible alternative to the highly toxic Mycofenalate I'm taking in the meantime..

    Good luck!

  • Thank you for your reply I'm lucky I have been offered the chance to have this treatment, it's so sad that money and cost has to be thought of instead of a person's wellbeing,hope you get it later on x

  • Hi Katinka46!

    You poor thing. You've really been thru it. I hope to god you are much improved.

    I feel exactly how you do, that Deconditioning is just an excuse cos they can't find an explanation. Now I've done these sustained exercises for 6 months, with no improvement to my breathlessness, I hope they will sit up and take notice. My local consultant has pretty much been overruled by Sou, and seeing as they have drug trials as well as various tests that are not available in Jersey, I feel forced to return, tho I am reluctant tho I feel they have done nothing to help me since referred in 2012.

    Thanks so much for your support!

  • Hi,

    Do you have fluid in your legs? How is your blood pressure? I get very breathless when mine spikes both upwards (180/110) and downwards (90/50) which is very difficult to control with medication. Also, a fast heart rate can cause these symptoms.

    Like you during a period of hospitalisation, I had an angiogram, echo, CT etc., however, it was during a later outpatient visit with a pulmonologist that spirometry gave me the diagnosis for the sudden onset of breathlessness which I knew was not my asthma. I have diastolic heart failure with preserved ejection fraction. This is very difficult to diagnose as the pump function of the heart might be normal, so too the amount of blood ejected with each cardiac cycle. This diagnosis was missed by two good consultant cardiolgists and a pulmonologist .

    I hope you don't have heart failure but don't rule it out too quickly because you describe very similar symptoms to my own.

    Hope you find a solution soon.

    Take care.

  • Hi Granny56!

    Sorry for late reply.. Been trying to do bit of garden tidy & am absolutely wiped but no one else,to do it, so, bit by bit..

    Yes I have hugely swollen ankles most of the Time, & Mycofenalate has increased my BP from 130/80 to 177/90 since starting it 18months ago, on many hosp checks in the last yr. I had to INSIST that Gp or one of several consultants on my case act & give me meds. On 5mg Amlopidine, & BP down to around 135/80.

    Also had heart echo again when back at Southampton gen for 3 wks of tests in FEB. Was assured it's not Heart Failure ( but would be consistent with Churg Strauss having affected my heart while undiagnosed..) breathlessness is worse, but still I'm told DECONDITIONING. Sounds like an easy answer to me..,esp despite 6months of Resp rehab exercises, plus tiring but slow work in garden most days..

    Thanks for your thoughts. Greatly appreciated.

  • I do hope you find answers soon. Are you sure the Dr said deconditioning and not decompensating ( worsening of symptoms)?

  • Have you ever heard of Babesia? Any time I hear "sudden onset", I think, infection. Did you have any flu-like illness around that time in 2009? Insect bite? Babesia can cause problems with the lungs, heart, kidneys, and head. Do you have sweats? If you answered "yes" to any of these questions, you might want to research Babesia microti or duncani, especially in the context of Lyme disease, because that's where you'll find the most information and people talking about their experiences with it. Could be a mycoplasma, chlamydia pnemoniae, or rickettsial infection too.

  • Hi!

    I've just done you a long reply, and it's just vanished.

    I did not have any infection prior to sudden onset. It started with a BARKING cough, out the blue. Had it for a good 18 months & nothing shifted it., was 24/7 & it was., oh Rose is here somewhere! Not funny for me!! I was given double dose antibiotics for 3 wks but with no effect. I was tested for allergies several times. My Ige level is always raised, despite Pred & Mycofenalate permanent doses, but a host of specific allergies have all come back normal.

    I will look ok up Babesia as you suggest.

    Many thanks for your thoughts. Very much appreciated..

    The doc said, you were just unlucky..

    MMM

  • I have been told I have deconditioning too. I was referred to a physiotherapist to relearn how to breath.It is your diaphragm that is deconditioning.

    Try laying on a the floor with a pile of books on the bottom part of your rib cage and watch it go up and down as you breathe through only your nose.

    do this for a period of time each day and then build up to twice a day and then three times a day and then four times a day.

    Once you have found these muscles you should be able to sit up put your fingers at point where both ribs join at bottom and you should feel your diaphragm moving if you doing it correct. You should be able to do same standing but I not managed this yet.

    If you google physiohypervent there is a website that has a list of chartered physiotherapists that can teach this and you can ask your go to refer you to one that is closest to you.

    Deconditioning means your diaphragm not your physical body.

    Hope this is helpful. I been through this myself and still seeing physiotherapist every 6weeks as my diaphragm was that badley deconditioned.

  • Hello, I can't add anything but just wanted to say all the very best to you. It sounds very tough.

    This is a very interesting post with great replies and reminds me what this forum is all about. Support, sharing experiences, knowledge, genuine care, plus a bit of tlc and love.

    Respect, Peege

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