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Recently diagnosed Asthma & COPD overlap…. Struggling with anxiety

Topgunele profile image
45 Replies

Hi, I am brand new to this forum. I have recently been diagnosed with Asthma and COPD overlap. Came as a shock to me as thought doctor was going to tell me I was just unfit! Lung capacity 66%…… lung age 78….. I am only 52. Am on pink and blue inhalers which seem to be effective but my anxiety has increased and I am having some very low days. I’m very anxious about hay fever season, I suffer from hay fever badly. Last year I had an asthma attack due to pollen allergy…..it was the most scariest thing I have ever experienced. I thought I was going to die. So now whenever I get a tickle in my throat or start having coughing episode I reach for my blue inhaler and pump like crazy because I’m so anxious that I’m going to have an asthma attack. Is this normal? How can I get help with this? I’m so anxious about the hay fever season. My GP prescribed me antihistamines but I had to stop taking them due to bad side effects. Could do with some advice and support please, no one seems to understand how I’m feeling. I also have Crohn’s disease so just feeling fed up about having another lifelong condition to deal with. I have been given a diagnosis, a couple of inhalers and just been left to deal with it. Nothing has been explained to me, talked through or anything

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Topgunele
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45 Replies
Mellywelly profile image
Mellywelly

I am so sorry you are understandably feeling anxious. Believe you me when I was given my diagnosis of copd I literally thought it was a death sentence and hit rock bottom. I was told with copd and the medication I am on that I couldn't take cough medicine or antihistamines if I caught something. The worst thing you can do is panic and I know its easier said than done. You need to go to your gp or nurse and tell them how you are feeling and you want answers to your many questions. You should look up breathing techniques and try them to just try and calm yourself when you are anxious. I really feel for you because you are reacting the same way I did. Let me know how you get on chook. 😉 👍

Topgunele profile image
Topgunele in reply to Mellywelly

Hi, thank you for your advice and kindness ❤️. It is so reassuring to know that there are people on here that really understand and care. I felt completely floored when I was given diagnosis but what made it worse was just being inhaler medication and no further support. And it’s so hard when other people don’t understand how scary it can be. I will definitely make a GP appointment to discuss my anxieties and look into breathing techniques. Thank you for being so helpful and supportive. Wishing you a lovely weekend

Hopeful1 profile image
Hopeful1

Hi Topgunele. I am sorry that you feel so unsupported by Drs. I also suffer mixed COPD and Asthma. and a couple of immune related conditions as well. Have done so for 40 years and still able to keep up with most folk my age, just a little slower. Treated well COPD can be slowed right down. Have you spoken with Asthma and Lung Uk, the charity which moderates fhis site? Helpline 0300 222 5800

A lot of trustworthy advice and booklets on their website. Especially the importance of good food. Go to them not Dr Google. I have also just done a pulmonary rehab course, the best thing ever. Do ask GP for a referral. They help you to excercise at the right individual level for you. And it has made a difference to me, with much less lung function than you.

The other thing which I am cross I was not told until recently is the best use of inhalers. For me using the blue one through a simple aerochamber device ( a little plastic tube with a valve) made the inhalers much more effective. The website for the type of inhalers you use will probably give details.

I am glad you have found this site. Lots of supportive encouraging experienced folk to reassure you that there is lots of good life after diagnosis.

Topgunele profile image
Topgunele in reply to Hopeful1

hi. Thank you so much for your support and advice. Having said that you have had these conditions for 40 years and you’re still going strong has given me hope. I wasn’t aware of pulmonary rehab courses but I will ask my GP about this, thank you. I will also call the helpline. Thank you again, wishing you a lovely weekend

AsthmaandLung profile image
AsthmaandLungAdministrator in reply to Topgunele

Hi Topgunele and welcome.

If you are in the UK, give us a call at the Helpline, you can chat with one of our Clinical Team about your diagnosis, they can support you and discuss the things you are worried about. And do chat on here with the members, you will get great advice and support.

asthmaandlung.org.uk/helpline

Take care

Helpline Team

Ergendl profile image
Ergendl

You've already had two excellent replies, Topgunele. You might like to consider joining a singing for lung health group if there is one in your area. Learning to sing and breathe using the diaphragm, helps you learn better breath control, reduces anxiety and improves your sense of wellbeing. It's helped me improve my condition from moderate to mild. I have COPD/asthma overlap like you.

See if there is a support group in your area by visiting asthmaandlung.org.uk/groups...

Topgunele profile image
Topgunele in reply to Ergendl

Thank you for your advice and support. I will check out the website. Wishing you a lovely weekend

Alberta56 profile image
Alberta56

Welcome to the forum. There are several medications for hay fever. Is there any reason not to try a different one? I think you need to talk to your GP about hay fever and about your anxiety. As Mellywelly says there are breathing techniques for helping anxiety. As for your 78 year old lungs don't worry. They will probably only be 78 or79 when you reach 78. (Mine are ninety something.) Ask your GP for a Pulmonary Rehab course and for a spacer (an Aerochamber) to help get more of your inhaler medicines into your lungs. Good luck- hope you'll get lots of encouraging answers.

Topgunele profile image
Topgunele in reply to Alberta56

Thank you for your support and advice. I have been to pharmacist today and got some advice regarding hay fever symptoms. I will definitely ask GP about pulmonary rehab course. So far I am finding this forum to be so helpful and reassuring. It’s reassuring just connecting with others than understand. Thank you so much ❤️ Have a lovely weekend

Alberta56 profile image
Alberta56 in reply to Topgunele

This forum is lovely. Over the years the people using it have changed- some wonderful members are no longer with us, but the ambiance remains friendly and helpful. xxx

PaulineHM profile image
PaulineHM

Hello,

Sorry to read about your recent diagnosis. Yes it can be scary, we know. There is hope though and lots of support and advice out there. Hopefully you will soon find a good way to manage this condition. Sorry to learn you have Crohns as well.

I was was diagnosed with ACOS - Asthma COPD Overlap Syndrome 21 years ago. I use the blue inhaler as a prophylactic at times, so if I know I am wheezy or likely to be then I use the inhaler before I need it. You might find that helps with hay fever.

Here is a video of how to use the easi breathe inhaler. ( if you have one )

youtu.be/MsVETfT8qQQ?si=SRp...

If you need to speak with the specialist nurse helpline at Asthma Lung UK do given a call.

Try to eat as healthily as possible and check out the exercise programme on the website. Keeping active always helps.

You may find that mindfulness meditation helps the anxiety as well . Here is a link to one of the teachers I sit with.

youtube.com/live/Ol1eNNzeVE...

Get back to us if you have anymore questions and let us know how you get on.

Go well,

Pauline

Topgunele profile image
Topgunele in reply to PaulineHM

hi Pauline. Thank you so much for you support and advice. Really appreciated. I’ve had Crohn’s for @ 35 yrs now so have learned how to live with it, so I guess it’s just a case of learning to live with this too. I’d never heard of overlap until I received my diagnosis. I do have some meditation and breathing apps so I will use those but will also try the link you sent me. Thank you for the inhaler advice too, very useful. Thank you again, wishing you a lovely weekend

PaulineHM profile image
PaulineHM in reply to Topgunele

Hi, you are most welcome. Yes, I agree, as with any long term conditions it is a case of learning to live with it.

We who have both asthma and COPD need to take a little more care as we usually have a slightly higher symptom burden compared with those folk who only have COPD. Avoiding picking infections can be helpful as well as managing all those other aspects of self care we need to do to keep ourselves well.

Let us know how you go on won’t you ?

Go well,

Pauline

GintyFerguson profile image
GintyFerguson

I have nothing much to add except I remember the panic when diagnosed with late onset asthma then bronchiectasis then caught pseudomonas! However, that was many , many years ago. We are all different and deal with these things differently. Personally this is my way: I remind myself worry and anxiety adds nothing to my life, it only takes away and reduces my immunity. I accept I might die , that's a possible consequence of my condition and I'll do what I can to avoid it but I have to accept that sometime I might not succeed! I look after my condition and take supplements like vit D , C and E, fish oil etc. I exercise and keep busy. I meditate . Finally, as a prisoner in my home in winter , I organise my life to stay occupied and entertained. It can be hard work but necessary. That's my regime and most of the time it works BUT it did take me time to process the reality of being ill after no illness as a young person .

I wish you well and hope you can find the path to peace . Good luck.

Topgunele profile image
Topgunele in reply to GintyFerguson

Thank you for your support and kindness. You have given some great advice, thank you. I already taking some of the supplements you have mentioned so I will continue to do so. Am also trying to find exercise that suits my condition. I love walking but obviously have to be more aware of the weather now and pollen count 🙄. I think all the positiveness and advice I have received on here will help me start to move forward with this. Thank you so much. Wishing you a great weekend

Izb1 profile image
Izb1

Hi Topgunele and welcome to the site. Alot of people join this group looking for answers as like you they have been diagnosed and then left to fend for themselves, this happened to me as well so I know how you feel. Ask your gp to refer you for a pulmonary rehab course and find out if there is a respiratory nurse in your local hospital that can help with how you deal with your breathing. Give the helpline (number above) a ring as they will be able to advise on a host of things. I am sorry to hear you have Crohns and hope that is well controlled, my sister has this and it took a long time and a few surgeries to get right. Knowledge is the key to fighting illness and the more we learn the better equipped we are to deal with the problems we have. I do hope you get some help so that you feel able to deal with this x

Topgunele profile image
Topgunele in reply to Izb1

hi thank you for your advice and support. It is shocking that we are given a diagnosis of a lifelong disease and just given some medication worth the further support. The irony is the NHS have recently pledged the following

‘Our ambition for respiratory disease’

The NHS Long Term Plan set outs the ambitions for the NHS over the next 10 years, identifying respiratory disease as a clinical priority. It outlines out how we will be targeting investment to improve treatment and support for people with respiratory disease, with an ambition to transform our outcomes to equal, or better, our international counterparts……..

Doesn’t seem to be happening.

When I was diagnosed with Crohn’s I was given so much information and support. I was also referred to certain websites/charities and have IBD nurses I can ask advice. I am lucky that my Crohn’s is currently under control, thank you for asking. Good your sister’s in currently under control too. Sorry for the length of reply. Take care

Izb1 profile image
Izb1 in reply to Topgunele

Yes I found the difference between being diagnosed with rheumatoid and a lung disease so very different x

Topgunele profile image
Topgunele in reply to Izb1

just doesn’t seem to be any info given? It’s almost like the NHS doesn’t understand the impact the diagnosis has on your mental health and how it is a shock to receive the diagnosis. Thank goodness for all the wonderful people on this forum and this helpful, informative website . Take care x

Izb1 profile image
Izb1 in reply to Topgunele

I dont think they care enough, they see so many coming through the doors maybe it becomes second place. Thats why we need to get as much knowledge as possible about our condition, this site has helped so many people to do just that x

teddyd profile image
teddyd

Very good advice already given. Anxiety on diagnosis is perfectly normal. Coming to terms with it is tricky. The diagnosis is the start of the new you looking after yourself, getting treatment/ medication that will help. Finding people that understand to talk to ( this forum) friends family. There are lots of treatments /medications some will maybe not be the best for particular individuals and others will be life changing. Getting to see the correct medical team. I am generally lucky Gp practice very good and respiratory nurse a good support. The consultant at hospital yearly visit.Ask question about antihistime that would be best for you.

I remember someone telling me "you are no different than you were before the diagnosis except you are getting the help treatment and support you require and need"

Sorry for the long post

Topgunele profile image
Topgunele in reply to teddyd

Hi thank you so much for advice and support. It is do good to connect with people who really understand. Beginning to come to terms with my diagnosis but just think it will take bit more time. I am surprised that my GP surgery never mentioned this website, it’s been invaluable to me so far. I’ve learned more about my condition and be given so much support just by reaching out on here. I’m so grateful to you and everyone else that has replied. I hope I can find a medical team as supportive as yours, thank you

Nula2 profile image
Nula2

Hi Topgunele, Can't add any more than the tips & advice already given, but just wanted to welcome you to this very supportive and friendly forum. Take care xxx

Topgunele profile image
Topgunele in reply to Nula2

Thank you, very kind. Have found this forum to be full of kind supportive people. You take care too and have a lovely weekend x

thecurlyrebel profile image
thecurlyrebel in reply to Topgunele

Hi Topgunele,

I was diagnosed asthmatic 15 years ago and remained well controlled using the pink and blue inhalers and antihistamines Fexanadine Aka Allevia.

Then, 6 months ago I had a series of chest infections, developed a terrible cough and after an xray was diagnosed with lung collapse just after Xmas! And then the anxiety set in. After a broncoscopy I was relieved to learn I did not have lung cancer. I joined this community around this time.

My diagnosis is still Asthma. But my inhaler has been changed to Trellergy after I complained that I still felt breathless inspite of regular consistent use of the pink inhaler.

That was a turning point. I was referred to respiratory physio, who gave me an Aerobika and a plan/ regime of breathing exercises, along with steam inhalations, postural drainage exercises.

I feel less breathless and I also use ACB techniques to control my anxiety.

I find this community a godsend. Just knowing there are other people out there who have these lung conditions who are not just surviving but doing well.

Ask your doctor about fexafenadine. It was recommended to me by a respiratory an ENT doctor ( I also have sinusitis)

Good luck 😉

Topgunele profile image
Topgunele in reply to thecurlyrebel

Hi, gosh this sounds so scary, so good to hear you are doing better now. Must’ve been a very frightening time for you. It’s good to hear you now have a good medical team and have techniques that work for you. You are so right about this community being a godsend, I stumbled on it by chance and am so glad I did, it’s amazing. Everyone on here is amazing! Thank you for your support and advice. Really appreciate it

Bingo88 profile image
Bingo88

Good morning Topgunele. So sorry to hear you are struggling so much with Anxiety at present. I was like you and many more who thought that the breathlessness was just because we are so unfit. I too was diagnosed with Severe copd and then Asthma a year later and it does come as a shock. But it's not a death sentence. I am still doing ok 4 years later. Ask your doctors if they have a Respiratory nurse who will understand your symptoms better and be better equipped to help you. Or get referred to a specialist at the hospital to get help to improve your conditions and hopefully stop the anxiety. Take care and stay in touch. We are a helpful group. Brian

Topgunele profile image
Topgunele in reply to Bingo88

Hi Brian, thank you so much for your msg. You are so right about this being a friendly group. So very supportive and helpful too. Your positiveness has given me hope, thank you. I will speak to my GP too. Thank you again. Take care

Souielouie profile image
Souielouie

welcome to this amazing site 🥰 . You have been given lots of extremely helpful advice, giving you a way forward.

I’ve been on the Pulmonary Rehab course it is brilliant & you meet a lot of others with respiratory conditions which helps. I also go to a Breathers group we meet every week, we do exercises, I’ve made some lovely friends. If you ask at your surgery they could give you information about a local Breathers group.

I remember how I felt when first diagnosed it’s scary. I wish you well, sending you love & hugs 🥰 xx

Topgunele profile image
Topgunele in reply to Souielouie

Hi, thank you so much for your advice and support. The Pulmonary Rehab course that has been recommended by you and a few others sounds very promising. Is this something I can request? Breathers group sounds amazing, I will enquire about this, thank you. It sounds like anxiety seems to be a common theme on here, seems to be due to lack of advice and support at time of diagnosis. I’m gradually accepting my diagnosis but put that down to all the help and support that I have received on here. People who actually do understand. Thank you. Love and hugs to you too 🥰🥰

Ern007 profile image
Ern007

Hi Topgunele,

Welcome to this friendly forum..

First COPD is not the death sentence some people think it is. If you smoke then stop, it's never to late. If you don't smoke that's a real plus.

Lots of people on here and everywhere have COPD and live to a good age.

To be anxious is understandable, in particular if nothing has been explained properly.

It can be distressing being anxious. can make life miserable - Seek help, go to your GP and tell him/her fully how you feel, anxiety can be treat.

I was very anxious when I was given a cancer diagnosis but with help from my GP, I feel a lot better in myself.

I have read the other comments on this thread and all offer excellent advice. Wishing you well :-)

Topgunele profile image
Topgunele in reply to Ern007

Thank you so much for your advice and support. I can’t imagine how frightening your diagnosis must’ve been. How are you doing? I will speak to GP, but I think that’s what has been holding me back about discussing my anxiety is because I’m worried about being fobbed off, not being taken seriously. I have been fobbed off by receptionist twice in past week about seeing a doctor. I don’t want to just be asked to contact the well-being team as they can only help with mental health side of things but I want help with my COPD/Asthma worries/fears. I will keep trying though. Thank you again. Wishing you well x

Ern007 profile image
Ern007 in reply to Topgunele

I rang and asked to see my GP - Really on top of everything else, I needed some help. She prescribed some tablets and they helped. I feel a lot better now than I did at the time. Be firm but polite, ask to see your GP and don't be fobbed off, say you want also to ask about your COPD. Good luck x

Topgunele profile image
Topgunele in reply to Ern007

Thank you 🥰 I am going to contact my GP surgery on Tuesday. I had a lovely day out yesterday but I also realised how much my anxiety has become heightened. Others have noticed it too. I know I need to get this under control. I am doing CBT but know I need a little more help. Thank you so much for your support. Good to hear that you are feeling a lot better 🥰x

Issy22 profile image
Issy22

Hi Topgunele

Welcome to the forum.

Sorry I cant offer any different advice, from all the informative posts above.

Sending you a big hug, 🥰 I know how you feel. It can be really overwhelming at times.

But don’t think you are on your own with your diagnosis, the wonderful people on this forum will advise/ support you , like they have done for a newly diagnosed me.💜

Issy x

Topgunele profile image
Topgunele in reply to Issy22

Hi thank you so much for your support 🥰. I am overwhelmed by the amount of support and advice I have received on here in such a short time. Everyone is amazing! Hope you are doing ok after your recent diagnosis…..I think one day at a time is key here. Thank you again, sending big hugs back 🥰

Issy22 profile image
Issy22 in reply to Topgunele

I agree one day at a time, it’s so much to deal with ,when you are first diagnosed. Take care of yourself and if you need a chat Iam always available xx

Topgunele profile image
Topgunele in reply to Issy22

Thank you, and same here 🥰 x

Superzob profile image
Superzob

I was given a lung age of 90 when I was first diagnosed with COPD, asthma and bronchiectasis at 66, but I still have the same lung age at 73, so the medication obviously works! When you get the shock of these diagnoses, it’s often difficult to appreciate that it doesn’t change you; you are the same person you were before the diagnosis, just that the diagnosis helps treat the condition you had, but didn’t know about. Consequently, you are better off now that your condition is being treated than you would have been if it hadn’t been found, despite the anxiety of “knowing”. You may find that the treatment will also help with the hay fever as the steroid in the asthma inhaler may act systemically on the hay fever symptoms; conversely, I found using my hay fever spray helped with the asthma if I continued it over winter.

You might ask whether your pink inhaler can be used under the MART system. This is where you can use it as a reliever as well as a preventer. I mention this as the blue inhaler is a short-acting bronchodilator (which is designed to expand the airways to get you out of trouble), whereas the pink inhaler probably has a corticosteroid, which is more effective on allergies such as asthma.

Hope this and the other posts will help you on your journey, and please look at the AandLUK website and/or contact their nurses, who are brilliant!

Topgunele profile image
Topgunele in reply to Superzob

Hi, thank you for your support and advice. Just explaining to me about lung age has educated me a bit more. I honestly just assumed that my lung age would just get older and older as time went on. So thank you for explaining this. I am on the pink and blue inhalers are brown inhaler made no difference. I’m also using aerochamber and steroid nasal spray. I’ve started navigating the Asthma and lung uk website and finding it really useful. But I’m finding the advice and support on here amazing. So much good advice, positiveness, understanding and empathy. Really feel like this is a safe space. Thank you for the advice about hay fever too. Really appreciated 🥰

Callies-mum profile image
Callies-mum

Hi

I’m brand new here too. I can’t really give you much advice but hope the little I can will help

I was diagnosed with asthma in 2010 and COPD in 2014, just last month was diagnosed with emphysema. Right now I’m struggling with a terrible bout of bronchitis that just won’t clear up and taking antibiotics and steroids along with my inhalers, im taking daily peak flow tests too. I’m having to be referred back to respiratory and have a chest X-ray which tbh scares me

Do you find taking to much of your blue inhaler adds to you anxiety, I know it does for me and gives me the terrible shakes. I take both my inhalers using a chamber as my technique wasn’t great without them. Perhaps that’s a thing you could try. You have just been given your diagnosis so try not to be too hard on yourself. Call your GP ask if they have a COPD specialist nurse you can talk too, I felt exactly the same, was told I have it, given meds and then left to it but then found out my GP surgery would call me in once a year for a review so hopefully this will happen for you.

I totally agree with Merrywelly, look into breathing exercises, they help me so much. I suffer from anxiety and PDSD and was told to give them a try by my therapist. I wasn’t convinced about the breathing at first but so glad i gave it a go and do them on a regular basis now. You'll find plenty on YouTube. I also done some pulmonary rehab online, my anxiety stops me from doing it in a group setting so ask your GP to refer you.

I honestly think that once you get your head round your condition and find the meds that work for you things will be much better.

Take time to get your head round your new diagnosis It can be scary but there is so much help out there

Love to hear how your doing 🙂

Topgunele profile image
Topgunele in reply to Callies-mum

Hi there, thank you for your support and advice. Especially when you are unwell and struggling. I really hope you will start to feel better real soon, I used aerochamber with my pink inhaler but haven’t used with blue one, I will give this a go, thank you. I’m also going to look up pulmonary rehab online, thank you. I really hope you start to feel better soon and that the respiratory team can give you all the help and support you need. Thank you again 🥰x

MELNEL profile image
MELNEL

Hiya 😃 and welcome 🌼I totally understand your worries. It can be very frightening, scary, to have an asthma attack.

I agree with the comments, speak to your asthma nurse,if you don't have one you should ask at your GP to point you out. They are good and easy to speak to and spend more time with you to listen.

As for your Hay fever speak to your asthma nurse or a good pharmacy, they have a lot for hay fever pills, drops, sprays, there are so many that it should be possible to find something suitable for you.

I do suffer from hay fever I guess most people with asthma do. 🤧

I don't have it the whole year, depending on certain pollen,

I take Piriton only when I have to and so far works for me.

So I hope you will find time to get help with your questions 😊 till then take care and don't forget to smile each day 😉

🌸🌸🌸🌸🌸

Topgunele profile image
Topgunele

hi thank you for your kind words and advice. Really appreciated. I visited pharmacy who was very helpful but also sympathetic which really helped. They have given me some advice on hay fever medication etc. Being on here has really helped, so many lovely supportive people with great advice. Tree and grass pollen both really get to me. I do believe that my anxiety is adding to it though. I spent a day at the coast yesterday……no coughing and my breathing was good. As soon as got home was coughing again…..maybe I need to move to coast 😂. But seriously, thank you again so much for your advice and support 🥰

MELNEL profile image
MELNEL

You very much welcome darling 😊 we all try to help 😉So as soon you home you start coughing again, maybe you need more fresh air? Maybe you should get some air purifier, I have one in our living room and bedroom and they do great job. I had my first in the bedroom and I sleep lot better even my partner doesn't snore so much anymore.

You don't have to pay a fortune for them, got mine from Argos with dust filtering, it shows how bad your air is. Those are great and not loud at all only if you put the fan on.

For my anxiety I got counselling and try a way to get rid of my anxiety, so hope it will help me, had only one video call, just started my first one 😅 check out mental health bit to get support 😃 best of luck 🥰

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