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Reader100 profile image
21 Replies

I’ve just joined. Good morning all! It will take me a while to find my way around the site but I have loads of questions when I do. Meanwhile, I wonder if anyone who has been diagnosed recently with COPD is as scared as I am and is suffering panic attacks too?

21 Replies
Ivanovna profile image
Ivanovna

I was totally terrified to be honest and I had panic attacks too. I never had a spirometry test as it was unavailable due to COVID. I was however given an inhaler which resulted in bad nights during which a coughed up mucus . During all this I continued exercising- I swim regularly- twice I had to come out of the pool when I felt I couldn’t breathe !

In the end I phoned the BLF helpline and spoke to an amazing woman who listened carefully to everything and asked searching questions. She put my mind at rest - felt I that I could have late onset asthma . I spoke to my doctor and changed my inhaler - he was receptive too .

I am not sure what if anything I have. I just swim and walk regularly and take a ventolin inhaler when I feel wheezy. Please just take a second opinion just in case. You might have COPD but just check again.

Good luck - I was so worried I couldn’t function properly for some months

sassy59 profile image
sassy59

Welcome to this friendly, informative forum Reader100. You’re not alone in feeling scared and anxious but do try and focus on a positive future because you do have one. Ask questions and chat whenever you feel ready. You’re amongst friends. Xx

MoyB profile image
MoyB

You're certainly not alone in feeling as you do, and you've come to the right place to get support!

When I was diagnosed I was given a few sheets of computer print out and told, 'Don't bother to read the last page.' I was then sent on my way as it was Friday afternoon and the surgery was getting ready to close. I walked away in total shock!

Thank goodness I found this site! I discovered that whilst some people were quite ill and struggling, others were living long and healthy lives despite having COPD. People were posting about doing all sorts of activities including running (Running? I've never been able to run in my life! Lol!). I found people here who had great sense of humour and positive outlook and realised that my life wasn't near the end (as I'd thought) but there was hope of a good future.

Yes, I've needed to modify the way I do some things as I now have a diagnosis of asthma and bronchiectasis as well (plus I'm 71 and have other medical issues) and I'm not great at walking far or uphill but life is still there to be lived and enjoyed.

I would urge you to be proactive about your ongoing medical care. Don't be afraid to ask questions and/or request a referrral to a consultant if you think you need more specialist care than your GP is able to provide. If inhalers and/or medication don't suit you, go back and ask if there is an alternative.

Don't be fobbed off - if you feel bad, insist on seeing a GP. Ask if you need to keep a 'rescue pack' at home with antibiotics and steroids so that you can attack any flare up as soon as it occurs, even if it's at a weekend.

Most of all, don't worry about this on your own! We're all here for you.

All the best,

Moy xx

Damon1864 profile image
Damon1864Volunteer

It terrified me when I found out o had it, but I've learned to live with it and with being on this forum how to cope. If your panic attacks are bad please speak to your GP they will probably give you something help you.. we are all here for you if you ever no red to talk or just want to have a good rant, so please be don't think you're on your own have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Katinka46 profile image
Katinka46

Welcome to this group, very knowledgeable, friendly band supportive. There are many members with stories like yours who have weathered their storm and achieved peace of mind and a life very much worth living. All the best xx

Karenanne61 profile image
Karenanne61

Welcome to this friendly, funny and informative forum. Yes I was worried following diagnosis after type 2 respiratory failure, mechanically ventilated, coma etc. But here I am. Still happy. Swapped acting for yoga and walking for embroidery but can still shop and eat cake - in moderation of course. 😄🍰 This forum is truly amazing, so many knowledgeable people, poets, humourists, photographers, writers are here.

SORRELHIPPO profile image
SORRELHIPPO

I had and sometimes still have panic attacks, from another diagnosis, I found Cognitive Behavioural Therapy helped, and I found some reliable CDs (recommended by a Therapist) which helped with relaxation, and some to boost confidence. Plug earphones with a long leed in and settle down, often during a pm nap, they do seem to help.

HollyBoyd profile image
HollyBoyd

Hi Reader100. Welcome tot the forum. It's understandable that you are feeling this way about your diagnosis, you are not alone. You will find so much help and support on this forum, all at different stages of lung disease. It does sound as though you need some expert help with your panic attacks, it would be sensible to speak to your GP and hopefully you will get them under control. We are all here to answer your questions. Take care xxx

Jane2005 profile image
Jane2005

Hi & Welcome. You certainly aren't alone in feeling scared. Major Panic attacks & really scared after told I had Chronic Lung disease with lung scarring. It all turned out not as bad as I thought although I do have COPD & dysfunctional breathing. It's been a long Journey but managing lung condition & anxiety better now. I found CBT useful & I am seeing Respitory Physio too. Found this site extremely helpful & Asthma & Lung UK too. Had to make some adjustments to my life but do quite a bit of walking & yoga which help physically and mentally. I hope you manage to get some help 🙂

wheezyof profile image
wheezyof

Hello and welcome,I'd be more surprised if you were not scared!

Being told you have lung disease is not pleasant. However if you follow the medical advice, eat healthy, drink plenty, exercise gently/moderately you should be able to live a good while having a good life.

You will have to make a few changes, depending on how bad your COPD is, but life will go on.

If you want information ask here, at your doctor's , the consultant or if you look on line use NHS sites or Asthma lung uk NOT doctor google (random sites that claim to know about lung health)

There are a lot of places on line that claim you only have 5 years to live following diagnoses, of course that's rubbish. Many of us on here have gone way passed 5 years. Some members have had bad lungs since childhood and are now 21 and a bit (I'm not saying how big the bit is)

Do go ahead and ask us, we'll help if we can xx

Caspiana profile image
Caspiana

Hello Reader. 🙂 I can't add to the wonderful sentiments of everyone else but I will say welcome to you. xx 🌱

garshe profile image
garshe

Just remember COPD is Not Terminal, it is progressive. You can control this by giving up smoking and excercise. Wee are all scared when first diagnosed but then read about the survivors on this site. I myself am one .

I learned to be Positive and grateful when diagnosed with Severe COPD 12 yrs ago. .My prognosis when googled was 1 - 3yrs lifespan. and here I am 12 yrs on.

I am grateful for every day as so many worse off than me. I can get out of bed in the morning and live ny life the best I can.albeit lot slower but

what's the rush. Learning to control your breathing and pacing when walking. If feeling SOB stop and recover before carrying on.

You learn what's best for you. To stop panic attacks remember to keep breathing. In slowly thro nose hold it then out slowly through mouth with pursed lips. Remember dont overthink the situation as this leads to health anxiety .I had this but have overcome it now. Remember it's all in the mind.

Book a session for Pulmonary Rehab 6

week course ,you will benefit from this and learn to manage symptoms.

Remember keep Positive and ignore negativity .there are many on this forum have survived 30yrs with Copd.

Good luck and remember we are all here to help. Cant give medical advice as not qualified, but able to support you when having an off day., and we all get these

Take care sending love xxSheila. 💕😎🥰👍

Reader100 profile image
Reader100 in reply to garshe

First time replying and trying to reply to everyone to thank you all for your replies and advice. I hope it DOES go to all! My main problem at the moment, is the panic attacks. Had one this morning after a night of less than two hours sleep and it was a real zinger. Sweating profusely and racing heart but did what you said and tried not to allow myself to go into it. Can’t quite control my breathing yet but tried to make my mind busy thinking of something other. I suppose it takes practice? I have a blood test booked this morning and will ask the nurse nicely if she will just listen to my chest to see if the chest infection has gone/is still there. Ideally would like to see the doctor but that’s a no-go here. You have to be triaged by the receptionist and then the doctor may or may not call you in the afternoon. So stressful 😕 xx

garshe profile image
garshe in reply to Reader100

I was reluctant to take medication for anxiety attacks, but when consultant offered me Lorazapam, a,very minute dose 0.5 mg.one teeny weeny tablet I thought that wont work.explainef i thought these were antidepressants and I am Not depressed just kept overthinking my medical condition. Constantly on my mind.Well I take the Littke 0.5mg of Lorazepam about half an hour before leaving house and it calms me and I am able to walk up steps to my driveway without panicking..I sit in the car and breathe slowly and this sorts me out. I do not think about it again. I used to have problems going in shops but now just walk straight in

Practice makes perfect you will get there. Remember you cant die from a panic attack it's just scary and you need to slow your heart rate down.

When climbing stairs breathe in on first step hold out on 3rd step in on 5th out on 7th it works.. after a while you will get up stairs in one without being breathless at top.

It's all about not thinking too much . Easier said than done I know, but you will get there in the end with determination..👍🥰💕xxSheila

jackdup profile image
jackdup

I can’t really add much to what others have said but it is not uncommon to feel the way you do until you have come to terms with it. I think I have always looked at it from the standpoint that I could have been diagnosed with cancer with only a short time to live so this is a better diagnosis, but certainly not a pleasant one. I was diagnosed in 2005.

Were you told what stage you are or did you have a spirometry or pulmonary function test?

Bingo88 profile image
Bingo88

Good morning Reader100. Yes I was the same 3 years ago when I was diagnosed with severe copd and it really frightened me because I know there's no cure. But I joined this group. And after reading that some people have been living with it for 10 years plus it inspires you to know there's hope to carry on leading a normal life with keeping going and keeping positive which I know isn't easy sometimes but it works for me. Hope you keep as well as possible and enjoy this friendly group Take care Brian

Izb1 profile image
Izb1

Hi Reader100 and welcome to the site. I dont understand why with respiratory complaints we are diagnosed and then just dumped to get on with life with no information or help. I found this site and have been so grateful for the information, genuine concern and help given along with the laughs from our fabulous members. I am sure you will too x

The healthunlocked helpline number is 0300 222 5800

Thepainterswife profile image
Thepainterswife

Hi and welcome 🤗. My husband was diagnosed 17 years ago and learned to manage the condition many years ago but I remember he had a panic attack in the very early days and frightened the rest of us to death 😱. You’ll find loads of advice and support here , along with the professional support you’ll soon learn how to manage the condition and enjoy life 😊

Hamish12 profile image
Hamish12

I have just been diagnosed, told to take inhaler, sent leaflet. Then had to do my own research for copd.

Alberta56 profile image
Alberta56

Welcome to the forum. I hope plenty of people with COPD will be able to reassure you that the diagnosis isn't the end of the world. And give you lots of useful advice. xxx

Ergendl profile image
Ergendl

I had supported my late husband through severe COPD some years before my GP gave me a COPD diagnosis too. I was determined not to die the way Bob had, so took on board all the advice here to live a healthier life, and my diagnosis has improved rather than declined. My COPD will never go away, but I've learned to live with it. Most people who meet me don't even realise I have a lung problem.

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