Chronic chest pain is making me crazy - British Lung Foun...

British Lung Foundation

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Chronic chest pain is making me crazy

AeonFlux profile image

Hello lovely people, I hope my cry for help is on the right forum. I've been having bad chest tightness and breathlessness for about 4 months now and it's progressive... Been calling my GP and going to a&e many times with chest x-ray, blood work, ECG results that were fine. No spirometer test as gp said they're not doing those due to covid. My peak flow is at about 80%. I'm a female, 26 yo, been smoking for about 11 years pack a day and I'm terrified it's COPD.. go says it's unlikely but I've seen many young people getting diagnosis. Started taking sertaline 2 weeks ago as recommended (docs think it's anxiety but i don't think so), also salmon, the blue inhaler, but it doesn't help me neither. It's just constant heavy pressure in chest for months without a minute of relief and I'm feeling hopeless. Can't cough, it's hard to inhale and exhale, even resting in bed doesn't help. Constant fatigue, too. I'm writing this with tears in my eyes, I can barely function anymore and docs keep putting everything on anxiety. Is anyone else dealing with this? What's the best next step? Thank you for reading..

38 Replies

I'm so sorry you feel so poorly. It is surprising that you have not been referred to a consultant as hospitals are doing full lung function test. I had one a couple of weeks ago and a face to face appointment with lovely consultant. I have various lung problems and, scarily, she said we need to start talking about a lung transplant.

AeonFlux profile image
AeonFlux in reply to Karenanne61

Thank you for your reply! I'll call go next morning ASAP asking for lung function test. And please hold on, I'm happy to know you have people taking you seriously. I hope you get well.

Karenanne61 profile image
Karenanne61 in reply to AeonFlux

Thankyou. You too. An answer will be found for you. ❤

Oshgosh profile image
Oshgosh in reply to Karenanne61

That must have been scary for you when she mentioned transplant.take care

Karenanne61 profile image
Karenanne61 in reply to Oshgosh

It most certainly was! It was mentioned when I saw my previous consultant, pre covid, but I thought people like me don't have lung transplants! I still think that but this consultant has said we need to talk about it this year as I'm 62.

Damon1864 profile image
Damon1864Volunteer

Please keep on at your GP, it could be anxiety but you have the right to have breathing test. Please let us know how you get on and please try not to worry. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

AeonFlux profile image
AeonFlux in reply to Damon1864

I'll do it tomorrow morning asking for spirometry test and referral for pulmonologist. I'll keep you updated. Thank you so much for kind words xx

AeonFlux profile image
AeonFlux in reply to AeonFlux

Good morning! No breathing test for me 🤷🏻 they say they still don't do those because of covid..

O2Trees profile image
O2Trees in reply to AeonFlux

That's why you need to be referred to a consultant. GPs arent doing spirometry at the moment but I understand you can get them at hospitals when referred by a respiratory consultant.

That’s true I’ve got copd/asthma and haven’t had anything for at least 19 months no reviews or breathing tests from doctors think they have forgot about me but the gps around here are awful, it could be anxiety or you have pulled some muscles in between your ribs this can be very painful, keep going and take care

Nor me! I thought it was good news that I hadn’t been until I went into hospital and they told me on my discharge that I’ve got either one or both interstitial lungs or lung. Not even talking to me about it when I already said I had lost my Husband from IPF. Now they are getting back to doing things I may have to go again.

ninelives profile image
ninelives in reply to AeonFlux

Mmm wonder if different hospitals have different criteria?Had spirometry at my local hospital in May and the technician said they had restarted testing 3weeks prior to that .

Hope that you get sorted soon x

Mavary profile image
Mavary in reply to AeonFlux

Have you done a peak flow? That may tell you how good or bad your lungs are. I hope you get somewhere with your Dr.

AeonFlux profile image
AeonFlux in reply to Mavary

I only did it once with my GP and it was 350l, so 80% for me which isn't perfect. Go said he's not too worries though..

Mavary profile image
Mavary in reply to AeonFlux

Maybe when you go this time they may take you more seriously. Smoking alone could cause a lowish peak flow.

AeonFlux profile image
AeonFlux in reply to Mavary

Fingers crossed!

Just wondering how much of the blue inhaler you are taking.The NHS guidance says if you need to use your blue inhaler more than three times a week you may need a preventer inhaler.

Check out the NHS website on Ventolin , Salbutamol etc.

I guess you have been tested for Covid recently …no mention of Long Covid been made to you ?

Smoking …any advice about that ?

Has your breathing pattern been monitored , which part of your chest you are using , tight shoulders …how many breaths a minute etc?

The BLF have a website which can give you tips on coping with breathlessness and anxiety until you get this problem sorted .

There are breathing techniques to help.

Gentle , gentle nose breaths with as relaxed chest as you can . Easy for me to say , but try gentle breathing while listening to calming music . I found Weightless by Marconi Union on you tube relaxing , the video with the feather picture as no adverts . Also try the 5 finger breathing exercise on you tube.

BLF have a helpline open during the working week for UK residents on 03000 030 555.

But ring your health professional again, explain what difficulties you are having , tell them how much Ventolin you are taking etc.

Sending best wishes .

AeonFlux profile image
AeonFlux in reply to knitter

Good morning to you and thank you for taking time to respond, very much appreciated x I take my inhaler about 3-4 times a week in hopes that it will help but it never does, I don't know why I even bother anymore.I recently started learning about breathing techniques and I'm trying to belly breathe everytime I think about it consciously. It somewhat helps me but not much. Just talked to my clinic, they just shut me down saying they don't do spirometer tests yet..

Hope you're having a great morning.

I hope your GP listens to you today and you are referred for proper testing.

I cannot undestand their reluctance to rule out COPD! If the thought of it is making you anxious (and that would be no surprise as it surely happens to most people who have chest issues) then ruling it out could only be helpful.

If, on the other hand, the tests show that you DO have COPD or another lung condition, the sooner you get put on the right meds the better.

Good luck with getting what you need! Lots of us have had to fight for what we need to be done. You are not alone. xx Moy

AeonFlux profile image
AeonFlux in reply to MoyB

Thank you very much! Just called with receptionist in my surgery, she said they're not doing spirometry test and that he will let my GP know that... It's just hopeless.

MoyB profile image
MoyB in reply to AeonFlux

Grrr! Put something in writing to your GP. It might get you further, especially if you copy it to the practice manager. Xx

AeonFlux profile image
AeonFlux in reply to MoyB

My GP told me to go to a&e today with her notes on my record. She also said she'll refer me to lung specialist that will *hopefully* give me lung function tests! Also got blood test tomorrow for alpha 1 deficiency. Hopefully things will move forward from now! Xx

MoyB profile image
MoyB in reply to AeonFlux

So glad to hear you're getting somewhere at last. Good luck! Xx

Sorry to hear that - I use a portable Spirometer at home that works well, it tracks on a smart phone too. The model is MIR Smart ONE | Personal Pocket Spirometer | Peak Flow (PEF) and FEV1, a white with and yellow/mustard striped one - on Amazon it's about £85 though so depending on your personal income perhaps push your GP for greater investigation first.

Even if it is anxiety, it seems that that would be quite an extreme reaction so investigation or help with that should be done I would think.

AeonFlux profile image
AeonFlux in reply to Response

Already looking into buying it! I hope they're accurate. I have a peak flow device from the same company and it's results didn't match with the one gp used for me. But it's worth a try, better than nothing x thank you

WHATTTTTTTTTT? I am due a full spirometry blood counts AND walking tests on Friday this week.1st Throw the fags in the bin, 2nd Insist you are checked over fully!! 3d hassle doctor for treatment AND for Pulmonary Rehab.

Despite what your doctor may say, It`s your body and your health so take it from me, you know best how you are coping Anxiety wise and breathing wise.

Insist, insist, insist and keep on insisting until you are diagnosed (even if it is just anxiety).

🤔❤️

AeonFlux profile image
AeonFlux in reply to tomc

You inspired me to contact them again! There has to be a way and now I know this problem won't go away by itself. I will listen to your advice ❤️ thank you

If I were you I would be demanding to see a consultant I saw min just the other day and even though he normally works from the RD&E in Exeter he has started moving around to smaller hospitals with his surgeries going to the likes of Oakhampton and Honiton Sooner you see a Consultant and get those tests done the better my dear Keep the chin up Stay safe and as well as possible

eccosse

AeonFlux profile image
AeonFlux in reply to eccosse

Thank you very much. Just contacted my clinic again and will speak with my gp about it shortly x

Hi, I'm so sorry you're suffering like this at your age Aeonflux.Anxiety? No flipping wonder if they won't help you get a diagnosis grrrr!

There are quite a few lung diseases not only copd although there is something called Alpha 1 Deficiency which can allow younger people to have it.

It could be that you have undiagnosed asthma or allergies....how utterly maddening that they won't help you. Just to say, yes tge spirometry tests aren't happening at gp surgeries but if they could refer you to and expert ie a hospital respiratory consultant their 1st action before actually seeing you would be to order a full lung function test (which is more thorough than a spirometry), hopefully a CT scan and allergy tests too.

Can you afford the the £85 for the device mentioned above? About the cost of 8 packs of cigs no?

Could you ditch the cigs forever? There is a quit forum on HealthUnlocked too which could offer you support as well as us. There are so many members on here with copd from years of smoking who are now suffering terribly from the effects. Whatever is going on in your chest isn't being helped by them.

Do try giving the helpline a call as knitter suggests, they're qualified (unlike we mere patients).

Healthy diet, healthy weight, exercise, breathing techniques (well done on that, more demo's on YouTube), the right medication if you need it and as much knowledge you can glean, preferably from this or NHS sites will all help.

You're so young with a whole wonderful life ahead of you, I wish you the very best moving forward. Make that call ASAP or at least copy you post in an email (the address might be in the 'Help' flag above. Peege

AeonFlux profile image
AeonFlux in reply to peege

Thank you so much for your time x I was encouraged to call the clinic again and go will call me next hour, the people here are so helpful. I'm trying to quit smoking but then I get upset, smoke again and reset my timer on my no-smoke app which makes me hate myself and the vicious cycle goes on. I also have POTS (postural orthostatic tachycardia syndrome) which affects my bp and heart rate standing, that's why I'm trying to go for frequent walks and light exercise too. I really need to quit smoking.. it doesn't help my anxiety nor health. I even told my family, if I get diagnosed and it's not a chronic disease we'll drink champagne and I'll celebrate that day instead of my birthday as it's gonna be the day I live with hope again. Will look into that device for sure! Hope your morning is nice and easy x

peege profile image
peege in reply to AeonFlux

Email address to copy your original post to: helpline@blf.org.uk

Patk1 profile image
Patk1 in reply to AeonFlux

U must stop smoking.see if pharmacy offer help to stop.You will have anxiety,stop starting.

Anxiety can cause breathing issues.

I don't think you'll be given priority while you smoke and do address anxiety

AeonFlux profile image
AeonFlux in reply to Patk1

Yesterday doctor showed me my chest x-ray and said my lungs are hyperinflated. He thinks it's emphysema.

Hi AF, lots of good advice here, especially from Peege above.

You may be hyperventilating without realising it. Ive done that often with asthma and COPD. In hospital a couple of years back I had a bad episode and one of the nurses said anxiety was causing it. Now I manage my various lung conditions well and generally dont feel anxious even when I get breathless so I objected but she insisted. It was only when I was well again and looked into it that I realised that she was right. And good grief - I would be frantically anxious going through what you are describing. But the important point is that it's not your fault if you are anxious and they shouldnt be dismissing you.

Anxiety when you have lung conditions is a bit chicken and egg. Whether anxiety is a cause or a product of poor breathing doesnt matter - your breathing needs proper treatment anyway.

What happens with hyperventilation is that more and more air is trapped in your lungs so that there is less and less space for the air to go into. And this is genuinely anxiety inducing.

Something that works for me when Im breathless is to stand near a kitchen work surface and place my hands on it leaning forward slightly. Having said this I do note you have a condition where standing gives you various symptoms so ignore if inappropriate - like everyone here I am not medically qualified but this works for me.

I echo those here who suggest joining the Quit Smoking site on this forum. You should get lots of support there. There is still stigma in the medical profession about smoking related conditions and although they shouldnt be, there are still GPs who are dismissive of smokers. Please dont hate yourself as you say above - smoking is a heavy addiction but if you get help you will be able to beat it. Good luck :)

Wonder if different health authorities have different criteria Had spirometry in May and the technician said they had restarted testing 3 weeks prior to that.

Hope that you get sorted soon .

Just want to wish you all the best as you take this forward. A lot of us on this site have learned that we have to make a big fuss just to get the care we need. As they say, it's the squeaky gate that gets the oil.

Got x-ray of my chest taken and doc said i have hyperinflated lungs and he thinks it's COPD. That's a cold shower at 26...

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