I'm 33 years old and have hardly left my house in months, I'm at the doctors nearly every week unable to breathe properly at all, I'm on constant steroids and I keep being told I don't have chest infections but that my lungs are struggling! I have had chest X-rays and the doctor told me I was suffering with bronchitis developing into copd! I'm up most night propped up and wake up about three times a night feeling like I cannot breath at all choking and having what I can only describe as a asthma attack, until I bring up lots of white sticky phlem! I do this about three times during the day also! I cannot climb my stairs and so I have been confined to my bedroom for months now and only leave the house for appointments! I need help I'm at my wits end I have an 8 year old daughter and feel I'm letting her down as a mother as I cannot do the things I used to, and I feel bad for my husband too as I never have any energy as I never get a full nights sleep and he now even has to come with me when I get a shower as change in temperature or even going to a room with a window open or steam can completely set me off! They are sending me to an asthma specialist mid June but I'm so sick of being fobbed off! I want to get better for my family! And as I have been off work since March my work are looking for a legal way to get rid of me, I'm not a lazy person I have worked since I was 16 and never been on benefits, yet at the moment I can hardly put a wash in the washer without being unable to breathe. Anyone with any suggestions??????
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Monroe81
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You need to get a proper diagnosis. If you haven't been seen by a respiratory consultant in a hospital, and had lung function tests (they ask you to blow into tubes to see what's really wrong with your lungs), then you can't be sure what the problem is. And if you don't have a firm diagnosis, you Can't know if the treatment is right! you might need to try different inhalers - some stop your chest getting bad (preventers) and others help your breathing if it gets bad (relievers).
Or try calling the BLF helpline, their nurses usually give good advice. Good luck
Hi Monroe81 , you could of been writing about me, I recognise lots of things that you mention. I have copd and asthma which is very bad at times, struggle with the simplest things especially climbing stairs which leave me gasping for breath. I use a Spiriva inhaler with treats copd &asthma plus other medications to open the airways. You sound to me like you may have asthma, hope you get it sorted soon as you do need to get diagnosed properly. Once you are on the right medication you will feel much better. Hope you get sorted soon, take care. Tina. xx
Thank you so much I am on 8 steroids a day and then they decrease them but as soon as I get down to 4 a day I flare up completely again! I do have bad asthma but over the last few months I have got a lot worse, I just want to be able to breathe properly and have a full nights sleep! I'm on all sorts of inhalers but I'm practically living in my bedroom as I cannot cope with stairs at all, I just feel there is something more underlying as now even steroids give me no release! X
Sorry you are struggling so much, especially with a young child to care for. Agree with your friends above. You have had lots of visits to your GP and whatever they are doing it is clearly not working. Even though you don't feel up to it, you will have to be very assertive and ask for a referral to a respiratory consultant.
Thank you for all of your replies, I called my doctor the other day begging him to do something as my situation was getting me very very low, he is referring me to a specialist in mid June but all he keeps doing is putting me back up to 8 steroids a day until I see the specialist and offered me anti depressants!!!!! Really? I'm low because nothing they are doing is working nothing else! Thanks cX
I Have an actual appointment with the asthma specialist mid June it cannot come quick enough, I cannot sleep properly at all on the high dose age of steroids and so I take natural sleeping tablets to help me fall asleep practically sat up in bed, and then about two hours later I wake up unable to breathè until I have brought up a lot of phlem and this happens 3-4 times each night, I have been reading a lot lately and I've been writing down questions I wish to ask when I see the specialist also, and yes even on the high dose of steroids I'm still taking a high dose age of my inhalers too! I just want to get better ASAP, I'm just wondering if there could be another underlying cause..... I just dong know what!
Hi again, when I am on a high dose of steroids I have difficulty sleeping...I was prescribed Seroxat for anxiety for a while.
Do you need to take a bronchiodilator inhaler when you are on the high dose, or can you manage without?
Have you tried the pursed lip breathing technique when you are breathless...you can find it on you tube....breathe gently in through your nose with a relaxed diaphragm and out through your mouth gently with pursed lips...repeat a few times.
Also try and breathe gently with a relaxed diaphragm...gentle belly breathing, so that you don't hyperventilate at other times.....with a closed mouth so that the air is filtered and warmed.
I am so relived you wrote this post, I am going through exactly the same as you, last year it began so quickly, was sent to see nurse at surgery, she diagnosed COPD, I could not understand how one day you are breathing fine, walking more then an hour a day briskly, then next day can't get a breath left it for a month, got worse, like you coughing and chocking, none of the pumps I have been given work, have had chest x-rays came back with small bit of damage on one lung, nurse said it is mild COPD, I said spend one day in my shoes then tell me its mild, I can only walk a few steps then have to stop as feel I am being strangled, then cough starts, like you bring up white sticky stuff, which seems to come from throat, I was not going outside but am forcing myself to do a little bit each day, going for another chest x-ray if nothing comes of that I am demanding to see a specialist, I have suffered this for over a year, won't to it anymore, like you quality of life is not good, every symptom you have, I have got, will let you know what happens, and if you could do the same, it will give us an idea of what's going on, don't feel guilty about family its not your fault. Annette !!
That does sound very similar, only I have tried even forced myself to go out for a little walk but once outside I walked passed three neighbours houses, walking slow holding my husbands arm and straight away could not breathe and had an asthma attack and was vomiting phlem, my husband had to bring me back home and take our daughter for a walk himself, I feel useless, I'm 33, but I suppose there are people out there who are worse than me! And yes Annette I will keep you updated! X
Know exactly how you feel, nothing worse to feel so helpless, a little thing like hoovering, or any housework becomes full of anxiety, even just to move, know how you feel
But your breathlessness is indeed worse than mine, I stop every few steps and pretend I'm looking at something, what a challenge, these gps would benefit from one day to experience what a sufferer from this breathing condition goes through. Annette
Hi ed I've just come back from the hospital after being on a nebuliser, yes it is worse at night once I try to settle for the night and then a few times during the night I wake feeling like someone is sat in my chest and like I am choking and then I cannot settle until I have brought up plenty of sticky white phlem! I'm not sure about a nasty taste in my mouth as I'm constantly bringing up phlem so it constantly feels yucky!!! I'm the same any sprays, air freshness or perfume and I'm off! I cannot climb stairs or even a change in temperature will set me off, I had a chest X-ray tonight also and they said it looks like copd! But that I will have to wait for a scan for a more in depth look!
Yep that's what I was like - the worst trigger was Fabreze, but I couldnt stroke the dog., someone walk past disturbing the (new)carpet even, air fresheners all had to go. etc.
Are you an ex smoker?
And any info on the prescribed inhalers?
And after a bad night is your breathing better before you've used your inhalers in the morning?
2 puff of the Symbicort in the morning and in the evening also one puff as and when needed during the day, I also take my ventolin a lot through out the day! And in regards to the morning I literally wake up needing my inhalers as I wake up unable to breathe, I just want to get better ASAP! How are you now ed?
Not too bad, way better than I was, so don't despair. Diagnosed (sort of) eventually when I got the GPs got off their ar*es, after months of incompetence.
Now I'm back at the gym etc. but it was a long road.
Two things I believe key:
A) I got that ill, they kept upping the meds, but I turned out I was having an adverse reaction to Seretide and it was worsening my breathing. (It got me in A&E twice, blues & siren on)
It eventually dawned on me it was seretide reaction (not them..), and they changed to symbicort, which didn't suit me either.
By trial and error I identified I was reacting badly to the steroid element in them and went on to only Clenil Modulite 100 x2 per day + Spiriva x1pd (was a big help) & Ventolin as required.
B) The twitchy wind pipe was being caused by 'silent' acid reflux... (heartburn, GERD); me, not them... again...
Some people get pain with heartburn - but plenty have the damage but don't feel the pain, and I would guess that is a risk for you, too.
Ask the Dr for Omeprazole and/or buy Ranitidine ( 2nd line prescription if peeps can't take Omprazole, cheap, but good,available otc) in the mean time.
Silent GERD can do some nasty permanent damage, best avoided. The Drs should be prescribing it on a just in case basis, but to save the NHS a couple of pound, they don't. Read the enclosed notes.
Even if I'm right, it won't come better overnight, I'm afraid, it took ages to get rid of the mucous plugs in my lungs. Stay with the antacids, and maybe ask for a change of inhaler if Symbicort isn't helping, or ask to add Spiriva in.
If I'm right about the reflux it'll maybe hard to tell what helps & what doesn't for a while.
Hi Knitter - I stayed on just Clenil + Ventolin for most of last summer, Tried fostair (formoterol & steroid) which didn't suit either. Now, do get some benefit from Formoterol (Oxis)- which is a LAB + I use Spiriva from time to time, but regular usage gives me terrible mucus throat/ sinusitis, (at least I think it was the Spiriva, but could be a combination?) plus I still take low dose Clenil.
Currently (3rd day) trying Seebri alternate to Spiriva.
I also take Carbocisteine, but if I stay on it I'm coughing all day - so I use only one a day, except when I think I'm more 'chesty' - I'm not sure it helps.
I'm also on BP tabs, Statin, Beta blocker... and ibuprofen for sore throat, ha!
I'm already on omeprazole two a day, and also adcal D3 for my bones as I'm on do many steroids! I cannot wait for my appointment mid June! I'm home now after spending hours in hospital on a nebuliser again, I'm shattered I just want one nights full sleep! Night all.
I have been on s. 400/12 for about a year now after being on 200/6 for about a year also, I did not sleep well at all again last night, I just want answers, to know when I can get back to the person I was a few months ago and play with my daughter and be a good wife to my husband.
I only joined this site the other day and already feel like I have been introduced to so many lovely people who know and understand what I'm going through.
So sympathise, I know - how bad you feel all day and are almost afraid to lie down to get some sleep which you so badly need.
If you want best advice we can offer, best you give us the FULL story.
Answer these questions?
Are you a smoker? Ex smoker? Asthmatic?
How long ago did you first get symptoms? What were the symptoms at the start? What meds were you put on first? What meds now? Did you have Xray? Peak Flow test? Spirometry? What were the results?
Hi Monroe, I am sorry you had a bad night, and I do hope you get reassurance from this site.
I have been in the position similar to yours.....a tightening of an already tight chest if I opened the frig even....and the stairs felt like facing Everest. But after trying various inhalers I found the ones that suited me and the ones that made me worse. I also practice the gentle breathing with a closed mouth, but I still find myself mouth breathing if I don't take care.
I have three adult asthmatic daughters too, they have tried different medications before they managed to get better control. I have also offered to pay for Buteyko Breathing lessons for them .....I did a course in the past....but the method is not suitable for everyone and is very expensive.
So sorry for the late response but I'm very annoyed.....
I went to see the specialist last Tuesday and on the computer she pulled up a cat scan picture that I had done 2 years ago ( which I was told was completely clear by my doctors 2 years ago) and started looking at it with me then she said you have bronchiectasis what medication are you on for it! I looked at her and said I was told 2 years ago that scan was clear and she said it's definitely bronchiectasis!!! She then prescribed me three new inhalers
Serevent dysk
spiriva respimat
Qvar.
Also an allergy tablet to take each day.
She then said that I would have to have another ct scan to see the change.
I left her office completely shocked and when I got home of course read it up on Internet. I was shocked as it states that this is a progressive illness and if found early enough can be kept under control! So now as I have gotten a lot worse in the last year I'm left wondering what if they had told me this 24 months ago.....would I be this bad now???
Hi all. I am going for a second cut scan to see. How much damage has been done to my lungs over the last 2 years due to me not receiving the correct treatment for my bronchiectasis. So fingers crossed guys.
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