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If it is not asthma, could there be something wrong with my lungs? πŸ€”πŸ€”

daphneblake11 profile image
daphneblake11
β€’41 Replies

Hi. What is your opinion on this? Do you think I have Asthma or something else (perhaps a lung problem)? πŸ™‚

I'm 19 years old and have been significantly out of breath always, from the age of 6/7. It was not until I was about 15, that I was officially diagnosed with asthma by the gp after I had an asthma attack in the shower (the gp was not convinced I was asthmatic when I went to them at the age of 7).

In terms of family history, my Dad has asthma, yet he claims he has "grown out of it" with age. An aunt of mine also has asthma.

Despite being given medication, which I have been on for almost 5 years now, my asthma is very much not improved. I have visited the GP/asthma nurse a couple of times, yet they cannot believe that I am as out of breath as I say I am (my peak flow is usually good, for someone with asthma, according to them). I am on strong asthma medication, however.

I have been on montelukulast tablets and have had to rely on the use of my purple and blue inhaler for years now. But they do very little. When I stand up, I still get dizzy, I cannot walk up the stairs without feeling like I am going to collapse. Even getting dressed greatly exhausts me. If something falls on the ground and I have to pick it up, I literally near pass out. I wish I were exaggerating. I am of a healthy weight for my height.

Exercise is the absolute worst for me. I can only do standing exercises and after a literal star jump I have to take my blue reliever inhaler. I wish I were being dramatic, but when completing a 10 minute standing home workout (on the days I feel motivated enough to deal with the challenges of exercising ) I have to take my blue inhaler about 100+ times for that one 10 minute video and drink lots of cold water. I also have to keep a stack of tissues beside me so that I can discard of all of the phlegm that gets stuck in my throat (tmi, I know, sorry). I want to exercise and be toned but the thought of having to put up with my breathing depresses me and so I sometimes cannot bring myself to exercise. Brisk walking even makes me extremely out of breath and it has been like this since I was a young girl.

Any time I eat or drink anything I cough so much. I cough anyway all the time, from when I wake up in the morning, until I go to sleep at night. But the coughing gets so much worse when I eat or drink. It's a very chesty cough.

I have been in contact with my gp surgery, but with covid occurring, they are understandably extremely busy and so it is difficult for them to sort me out properly.

I was put in touch with a pharmacist at my GP surgery. He was surprised by my symptoms and said they did not exactly meet classic asthma criteria. He gave me loads of different acid reflux medication to try to see if it would help my coughing at all, but to no avail. He was also surprised to hear that I am yet to have a chest X-ray (I was never offered one) to get a closer look at my chest.

I often hear of people with severe asthma on forums, who have their asthma well controlled and are able to go on daily runs. They only need to use their blue inhaler every now and then whilst running. I feel I am using my blue inhaler an extremely exessive amount of times and I am not exercising nearly as much as people who go for daily jogs, who have seriously bad asthma.

I went to the gym before covid but it was so difficult for me, with my breathing. It was only because of the air conditioner that I could exercise. When I exercise at home I need a fan beside me on full blast and windows need to be open, to aid my breathing. If it is too warm, I get overheated and this makes my breathing even more challenging. This has always confused me greatly, because, while I find it easier to breathe with cold air, online I have seen that asthmatic individuals usually need heat to feel comfortable enough to exercise.

A great aunt of mine has chronic bronchitis and she has had it for a couple of years wonder if I too could have bronchitis or CPD or something similar to asthma that is just not being picked up on? My quality of life is greatly affected. I am exhausted from being out of breath all the time. I have an oxygen device for my finger that I use. My oxygen is slightly lower than other family members of mine, but not by much. This confuses me, because I am so greatly out of breath all the time and I would have expected it to be lower.

Why does my medication help so little and why do my symptoms vary so greatly from "classic textbook asthma." Could it be something else? Perhaps a lung condition?

All advice is greatly appreciated. Thank you for taking the time to read my very long question/life story lol πŸ˜†

41 Replies
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Hi and welcome .

I have three now adult asthmatic daughters, my grandmother and mother were always wheezy and I am asthmatic too .

So I have some personal experience of breathlessness , but no medical training .

But I have noticed we can be breathless even though O2 levels seem ok .

You need to contact your GP again .....can you tell them what you have described to us here at your appointment,

You may need a change of preventer medicine .....if you are using so much Ventolin does your GP renew your prescription without a query .

Have you a spacer and a peak flow meter , an emergency plan ?

There are breathing exercises you can try , but you need professional help first . Ring your gp today please .

The BLF have a useful website, and a helpline on 03000 030 555 , as does Asthma UK ,open for UK residents during the working week.

Take care .

corriena profile image
corriena in reply to knitter

Oxygen saturation and breathlessness are not the same thing if you exchange oxagen well your saturation will remain good even when you feel out of breath

Hi knitter, thank you so much for the extremely helpful advice!!

It's crazy that so many members of your family have suffered from asthma over the years. That must have been so difficult for you all to have to deal with.

I have to say that you are definitely not the first person to mention that even though oxygen levels are shown to be okay, that it does not necessarily mean this is the case. I never would have guessed that!

It's funny that you have said about my ventolin usage. This week, since posting on this forum, the pharmacist who I collected the prescription from did in fact, question my usage of ventolin. She said that I need to speak with my asthma nurse ASAP.

I use my spacer when taking my medication, but have ordered a new peak flow meter because I threw mine out a long time ago. I will now pay close attention to my peak flow results.

I never knew breathing exercises for asthma were even a thing until posting on this forum. But agree, that these need to be professionally taught to me. I will be in contact with my gp.

I called the BLF foundation yesterday, like you and many others recommended. They were great!

Thanks for taking the time to write such a detailed and helpful post!! πŸ˜€πŸ˜€

This is a classic case of your GP failing in their duty of care towards you. They are way out of their depth and meanwhile your condition deteriorates.You need to see a respiratory consultant asap to have all of the tests to find out exactly what is wrong with your lungs.

Go to your GP ( take somebody with you for moral support) and absolutely insist that you are referred. If they try to argue with you simply tell them what you have told us - that all treatment that you have been given has been ineffective and you need the help of somebody who can treat you properly.

Be brave, I'm afraid that we have to be pro active in our own interests and vociferous in seeking out the right treatment.

Good luck

Lol1944 profile image
Lol1944 in reply to Littlepom

I cannot agree more. Some GPS really do need a kick up the posterior.

Littlepom yeah my GP really isn't the best to be honest. They kind of just want go get rid of me as soon as possible when I speak with them, so that they can move onto the next person. It's unfortunate how common this is.

I agree with you 100% when you say I need to say a respiratory consultant. It truly is a mystery. Talk about bad timing though with covid and all the lung problems that that is going to cause in lots of people.

I will be sure to bring my mum with me to the gp like you have advised when the first opportunity arises. I like how you have said to mention that I have been in contact with the BLF and have had to seek advice on a forum of theirs. I will use what you have written as an outline of what to say.

That is so true. You have to really be ready to fight for the tests and treatment that you need with many gps. You and many others on this forum have inspired me to do so and thank you for that.

Also, thank you for taking the time to write such a detailed and helpful post Littlepom!! I am truly grateful.πŸ˜„πŸ˜ƒ

You are very welcome. There are so many nice people on here who will be only too pleased to support and encourage you in your journey to get proper treatment and a good quality of life.x

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Welcome to the forum. Two great replies from those who understand. Suffice to say I wish you well and do please be strong and insist on a referral. Take care xxxx

Thank you so much sassy59 for being so welcoming!! I have learnt so much already from everyone as it is and I am looking forward to learning even more.

Many people have mentioned how important it is that I make sure I get a referral. I will work on doing just that! Thanks for the advice!! πŸ˜€πŸ˜

πŸ‘πŸ€—πŸ₯°πŸ˜˜

Do you have low blood pressure too, daphneblake11?

Hmmm now that is a good question. I suppose I've never really thought about that. I can't remember for sure if I ever got it checked. It would definitely be worth checking, now that you mention it.

Thanks Ergendl! πŸ˜€

As you have written so clearly about your condition here, would it be a good idea to copy it and send it to your GP by email? I have this theory that when you speak directly to them they are very quick to pick up on the first bit you say, and miss some of the other stuff that is important - not all GPs are like this, but I have certainly encountered more than one in my long life! Lol! Having it written down may bring it home to them a bit more and they can refer back to it.

It might be worth a try - after all, you would have nothing to lose by it.

All my life I would get breathless on exercise and have always detested having to walk up hills. I had a friend who can walk and talk at an alarming rate and then she always demanded answers whilst I was puffing away just trying to get my breath! I wasn't diagnosed as asthmatic until my late forties, When I had my first appointment with the asthma nurse I told him that I suspected I may always have had asthma and when I described all my symptoms to him he agreed that this was probably the case.

Although I have had a couple of bad attacks, including one that required an ambulance and overnight stay in hospital, my asthma has never been severe enough to use the amount of reliever inhaler that you do. This seems excessive to me and should really be looked into. There are lots of different inhalers out there and there may be another one that would suit you better.

I agree with Littlepom that you need to see a respiratory consultant and I would push for this if I were you. Meanwhile, give the BLF helpline a try. Lots of people have posted on here how helpful they have found them to be.

All the best. xx Moy

daphneblake11 profile image
daphneblake11 in reply to MoyB

Hi Moy, I really like your idea about sending the information to my GP through email so that they can refer back to it. I never really thought of that, actually. (And yep, I completely agree with you when you say GPs can be a big hit or miss. Especially those who live near me lol). I might just do that this evening, actually.

I can't believe you weren't diagnosed with asthma until you were in your forties. That is an extremely long time to have to have to be uncomfortable and in pain. Wow, I'm so sorry to hear that!!

It's scary to think that you did have the number of asthma attacks that you did. Imagine you had one of those attacks without even being recognised as being asthmatic and you didn't have ANY medication nearby.

I 100% agree with you when you say my inhaler usage is excessive and is worth further investigating. You could be entirely right in saying that maybe I'm just not on the right medication yet.

Meeting with a respiratory consultant is definitely the way forward. Yesterday, I took the advice of you and many other people on this forum and did in fact get in touch with the BLF. They were more than helpful.

Thank you so much for taking the time to write such a detailed and helpful post Moy. I hope that you never have to experience any more difficulties with your asthma in the future!! xx❀❀

MoyB profile image
MoyB in reply to daphneblake11

Keep us posted as to how you get on, won't you? Good luck. xx Moy

daphneblake11 profile image
daphneblake11 in reply to MoyB

Thanks Moy, will do!! xxπŸ˜€πŸ˜„

My daughter as asthma so I can sympathise with your problems. Personally I would keep a diary of when these problems happen and try and find out if there is a trigger to your episodes of shortness of breath. I actually took a video of a couple of my daughter attacks to show the GP that I was not just a over protective father. Perhaps a referral to a respiratory specialist may help. GP have very limited tests that they can perform. The lungs have a great amount of over capacity. I have around 60% of lung function but I have near near normal oxygen saturations but certain chemicals/substances can make me feel tight chested and feel short of breath. You need a review of your medications but I believe you need to see a specialist first to rule in or out factors which could make your condition worse.

Hi Badbessie. I never thought about keeping a diary for when problems do occur to see if there are in fact, any triggers that are contributing towards my difficulty breathing. That's a very clever idea, actually.

It's unbelievable that you had to film several of your daughter's asthma attacks, just to show the gp that you weren't overreacting. That's so sad and I'm so sorry to hear that. I hope your daughter is now getting the help that she needs for her asthma.

I agree with you 100% when you say that a referral to a respiratory specialist is the way forward. I now see from having joining this forum, just how much more detailed the tests that they can carry out, are.

Wow, I suppose I never gave much thought into how different chemicals can further affect my breathing. Thank you for highlighting this.

My next step is definitely working towards seeing a specialist. Thank you so much Badbessie, for taking the time to give me some great advice in relation to my asthma/lungs. It has been more than helpful!! πŸ˜€πŸ˜„

Have you had any instruction on breathing techniques? Try and get on a pulmonary rehab course and or see a physio these can help with managing the breathlessness. The pulmonary rehab course will help you assess your level of breathing and start you on the right level of exercise that you may benefit from.

Hi Biker88 it's funny that you say that, a couple of other people have also mentioned the importance of breathing techniques. To be entirely honest with you, I didn't even know that they were a thing before posting on this forum. Apparently they can work really well too. I definitely need to find out more about the pulmonary rehab course to see how to better manage me asthma. It would be nice to know what exercises I could actually deal with. At the minute, even doing taichi is difficult lol!! πŸ˜€πŸ™ƒ

I can only say follow the advice the other responders have given you. You need to see a respiratory specialist and have tests/x-rays/ perhaps CT scan to find out what's going on. I had mild asthma for years until it morphed into bronchiectasis, but nothing like yours. No-one should be putting up with what you are going through. For the record my respiratory physio told me asthma can burn itself out, so your dad may be right. Good luck and best wishes.

Alberta56, I agree 100%. Being seen by a respiratory specialist would most definitely be ideal, moving forward, in order to get to the bottom of my breathing problems, once and for all.

It's crazy that your breathing became a lot more serious by turning into bronchiectasis. That must be so incredibly painful for you!! So sorry to hear that.

I never believed my Dad when he said that his asthma just disappeared. I never really thought that was possible. Guess I owe him an apology now hahaha.🀣

Thanks for the incredibly helpful advice!!πŸ˜ƒ

Hi Daphne- it was a relief to get a proper diagnosis and appropriate treatment. I've had far fewer chest infections and generally feel fitter. That's why I feel you need a proper diagnosis too. You're too young to be suffering from lack of care.

Oh that’s so good to hear Alberta. You must have had a lot of worry taken off your shoulders after you found out exactly what you had. It’s great to hear that you are actually being cared for properly now and so are able to manage your condition better.

I will definitely follow the advice that you have given me, so that I will hopefully be able to manage my symptoms a lot better too!!πŸ˜‰β€οΈ

Having very carefully read your post again with the symptoms you describe, I do think that your heart should be checked for any problems. Chest and heart symptoms can overlock and both need to be diagnosed or discounted by experts.

2greys profile image
2greys in reply to Littlepom

I agree, get a referall to see a Respiratory Consultant first, if they cannot find the cause they will then refer your case on to a Coronary Consultant.

daphneblake11 profile image
daphneblake11 in reply to 2greys

Very helpful 2greys, thank you! πŸ˜ƒ

Thanks Littlepom for your helpful advice. I suppose I never really thought about the possibility that it could be my heart that is contributing to my breathing problems. It is definitely worth further investigating, as you say. πŸ˜€

Hi and welcome to a forum full of kind caring and compassionate people who can share there experiences, I don’t have asthma, I do have symptoms you describe, bronchiectasis was my diagnosis mild, but not the cause of my breathlessness, chest X-ray never showed this, high resolution CT did as my conditions mild my specialist said this is not the cause of my breathlessness- muscle weakness is.....I can empathise as my quality of life in that I need to conserve energy to do the basic of tasks, showering I have a chair keeping the bathroom door slightly open helps me. My peak flow does not improve 110 for a few months. Recently my cough has improved after taking Beclometasone nasal spray/Beclometasone is also my preventer inhaler, sorry I cannot offer you anything else, excellent advice given to you by many persons who have had years of experience. I take my ventolin inhaler using the aero chamber before showering/after, I too become breathless particularly bending getting dressed, my inability to walk 10 yards without becoming breathless I now have a wheelchair, pulmonary rehabilitation advised will not help, as my conditions neuro muscular.

May I suggest contacting your Asthma Nurse requesting a consultation with the Respiratory Consultant,failing that send what you posted to the secretary of the department who deals with your Asthma, if it’s your GP practice who manage your Asthma send it to the practice manager.

Wishing you improved good health.

Thank you so much vwtopaz for your extremely helpful advice!!

You are so right in saying that this forum is filled with many compassionate and kind people. Everyone has been more than helpful and welcoming and they all seem to really know what they are talking about. All of the advice that I have been given has been great!!

I am so sorry to hear that your quality of life has been affected the way that it has, due to the various different things going on with your lungs. I find it very interesting that you too, can relate to a variety of the symptoms that I have been experiencing (especially with

getting out of breath when showering and struggling to walk without becoming greatly out of breath).

I will be sure to do some research, into the different conditions that you have, especially considering that you have pointed out that there are some major similarities there.

In terms of my GP practice, I will definitely take the steps you have outlined in order to ensure that I now get seen to and find out what exactly I have, once and for all.

You must be relieved that you know exactly what you have so that you are aware of your different strengths and weaknesses, relating to your lungs and how to best deal with them. Again, thank you for taking time out of your day to reply to my post! I also need to add that you are extremely courageous for living with the different weaknesses that your lungs have, because it must be far from easy ❀

terrelconnor profile image
terrelconnorAdministrator

Hello Daphneblake11

I am sorry to hear the problems you have been experiencing.

We have a team of Clinical nurses here on the helpline who will be happy to have a chat with you over the telephone.

If you would like to give us a call on 03000030555

Hope this helps

Take Care

Terrel

Thanks terrelconnor! I did what you and many others recommended and contacted The British Lung Foundation yesterday. They were so helpful! πŸ˜€

Just saying Hi and welcome daphneblake11. A wealth of information and suggestion from our very supportive forum. I hope that they will help you in finding a way forward.

daphneblake11 profile image
daphneblake11 in reply to CDPO16

Hi to you too CPPO16. Thanks for making me feel so welcome!! This forum has taught me so much alreadyπŸ˜„πŸ˜„

CDPO16 profile image
CDPO16 in reply to daphneblake11

I learnt most of what I know about my lung diseases from here and the Asthma UK site. Glad you feel us joining has helped. Do keep in touch and let us know how you get on. Carole xx

daphneblake11 profile image
daphneblake11 in reply to CDPO16

Ahhh yes, I have been in the Asthma UK forum too recently. Everyone on there has also been super helpful. Thanks again Carol!! xx ❀❀

πŸ‘ Welcome! Glad you've joined. As you can see there's a wealth of patient experience here.

GPs work to a system or process that they follow (exceptcases of obviousemergency), a sort of tick box thing. Years ago you could get access to it to see the pathways they use. I just searched for it and it seems now to be used for ambulance & 111 calls, annoying. Basically they won't do much (do they get training in 'fobbing off'?) until you've been a few times with the same symptoms. This is why a call to the helpline would be so useful, they're great & can give you expert guidance on how to proceed, questions to ask. Do call - pleaseπŸ™, office hours 03000 030555 it would be lovely if you can get sorted. You're young and have a lot of life left to live to the full & enjoy. πŸ˜‰

daphneblake11 profile image
daphneblake11 in reply to peege

Thanks peege for making me aware of this forum and The British Lung Foundation in the first place! I took your advice and called them yesterday and they were more than helpful!! 😊😊

peege profile image
peege in reply to daphneblake11

Aw that's brilliant news πŸ€—. I just thought as it may not be asthma this forum covers other lung issues too ☺

daphneblake11 profile image
daphneblake11 in reply to peege

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