Anyone Here with Asthma Overlap?

[Rachel112211]

Hi i'm newly diagnosed with moderate COPD (Fev1 52%) Severe Asthma overlap syndrome l was just wondering if anyone has any advice? My GP has said I need to prioritise on flattening my progression decline over the next couple of years but by that time age will start catching up with me. I guess that means I'm done for? TIA x

[Hoobs]

It never fails to amaze me at how ignorant most GP's are when it comes to lung conditions. I would tell, not ask, your GP that as he/she has clearly no interest or knowledge in your condition other than to make unhelpful comments , that you wish to be sent to a respiratory specialist who WILL take an interest and WILL ensure you get the correct medication.

You don't say whether you smoke , but if you do then stopping is the best thing you can do to help yourself. Exercise, a good diet , staying away from triggers and people with colds, treating chest infections promptly will stand you in good stead.

And finally to the most important part, you most definitely are NOT ''done for''.

[Cloudancer in reply to Hoobs]

Agreed!

[Rachel112211 in reply to Hoobs]

Thank you so much, my consultant has discharged me for now but changed my meds. I was taking two of the same drug type for years apparently. I plan to give up smoking in the new-year, after I have had surgery for a frozen shoulder. That will be my second frozen shoulder this year. I know smoking is the worse thing for me but the pain is unbearable and my mental health can't take any more at the moment. The one good thing my GP did was refer me to a counsellor when I was diagnosed. She seemed so fatalistic I couldn't really believe it and I was shocked. My partner died last year so I'm at ease with dying but she was also completely non committal as to how things might progress so I have no idea what to expect except what I've read. I had my asthma review this morning though and for the first time ever I blew a bloody 350 peak flow. My Asthma Nurse is fantastic. X

[Alberta56]

Age catching up with you in your early 50ies! What a load of old codswallop. By your doctor's reckoning I should be dead. I've had moderate asthma for years, which seems to have morphed into bronchiectasis, but I am quite definitely alive at 81. Just follow Hoobs' advice, keep active and do whatever you want to. Good luck.

[Rachel112211 in reply to Alberta56]

Thank you so much. I hope I do as well as you are x take care x

[Alberta56 in reply to Rachel112211]

There are a lot of alarmist sites on the internet, which try to convince people they are doomed. Perhaps your doctor has been reading them. A pulmonary rehab group would be great if there if one in your area. It would put you in touch with some knowledgeable people. Best wishes. xxx

[beech]

Hi - I’ve got a diagnosis of ACOS - asthma COPD overlap syndrome - given by my consultant, but often the “overlap” seems to be overlooked by other medical professionals 🙄 and viewed as just COPD.

As Hoobs says, the best we can do is to look after ourselves and prioritise our health - stay active even if the breathlessness is unpleasant, be compliant with your medications, eat well, stay hydrated, and so on.

There’s no reason to give in and accept decline, it’s not inevitable, find what works for you. If you’re fortunate you may have a Respiratory Nurse at your GP surgery, they’re usually a better source of support as they are respiratory specialists. The Helpline team on here can also advise you.

Good luck!

[Rachel112211 in reply to beech]

Hi, I had my Asthma review this morning, my nurse is fantastic. I even blew a peak flow of 350, the first time ever lol x she graded me a 2 for copd whatever that means . There are so many scales and grades and mild is now moderate etc I have no idea haha x I think I'll just suck it and see xxx

[Ergendl]

I have COPD with 'a touch of asthma'! according to my now retired GP. Sigh! I have improved my breathing by running a weekly singing for lung health group. Check with ALUK to see if there is a group local to you, or look up diaphragm singing exercises on You Tube. This type of singing can help improve lung control, strengthen the muscles involved in breathing, and cheer you up too.

Wishing you all the best.

[Rachel112211 in reply to Ergendl]

I love singing and I did look to see if there were any local ones. I'm in York but the nearest one is Wakefield or Leeds. I was gutted. I even went on the training website to see if I could start my own but you need a qualified music teacher. I would love to join a singing group, i used to do Musical AmDram when i was younger xx

[Ergendl in reply to Rachel112211]

How sad. Yes, I loved AmDram musicals and panto too when I was younger, and would still take part in them if I only had the time.

If you want to find out about the group I run, visit breathebettersing.uk . I can send you session plans from my group that would show you how to run something similar in your area. I also put a couple of very low tech videos on the group's You Tube channel during lockdown that might help you.

[PaulineHM]

Hi Rachel, I was diagnosed with ACOS 20 years ago ( with almost the same FEV as yours) and I probably developed the condition 7 years before that.

I understand your anxiety and pessimistic thinking. However there is loads you can do to help yourself live a a good quality of life. If we put the effort in then it is worth it!

Stop smoking if you do, it makes a huge difference to the rate of decline and yes sorry it is a condition which becomes more progressive however yes that decline can be flattened out.

So do take meds you have been given,

Ask about attending a Pulmonary Rehabilitation course

Ask your GP if you can have the my mhealth app to learn more about self managing this condition

Look for the self management care plan on the BLF /Asthma + Lung Health website.

Come back here to ask any questions.

Smile…..

Be well.

Pauline

[Rachel112211 in reply to PaulineHM]

Thank you. That is some really sound advice, I was shocked when my consultant told me the dx as part of my long covid programme. I wasn't expecting it at all. As I said further up the thread my partner died last year and my MH is at breaking point with two frozen shoulders needing surgery as well as some other health issues. I think you automatically think the worse when your MH is compromised so sound advise like yours really helps. I appreciate it very much. Much love xx

[PaulineHM in reply to Rachel112211]

I remember being equally shocked and scared when I was diagnosed Rachel. I remember reading that life expectancy after diagnosis was 12 years 😂 but reading that really motivated me at the time to keep as well as possible and live life as fully as possible.

Brilliant for stopping smoking! It is the best single thing you can do to help yourself.

I am so sorry to read that you lost your partner, that is tough for you.

We are all here to support each other… education and good self care is essential to a healthier life style and our wellbeing .

You could look out for a local exercise programme, often run by the local authority or a local respiratory exercise group. Becoming fitter is a major help.

You are very welcome to dm me now and in the future if that helps.

Keep in touch.

Be well.

Pauline

[anng18]

Hi Rachel,

HRT could be useful, if you can tolerate it. Women's lung function deteriorates further once they go through the menopause, due to the reduction in oestrogen.

I wouldn't take too much notice of your doctor (very pessimistic) -I think people' s advice on here has been more positive and useful.

[Rachel112211 in reply to anng18]

Hi thank you very much, I went through an early menopause and unfortunately cant take hrt due to a family history if cancer. I actually have to take tamoxifen as a prophylactic. I completely agree with you the advice is wonderful and I really couldn't have asked for more you are all fabulous thank you xx❤

[Karenanne61]

That is very scary for you! I was told over five years ago that my lungs wouldn't last five years!🤣 My recent lung function test showed no decline from the previous one. As my tx consultant explained, a doctor can only make a judgement call based on the facts as they are at that moment. The scary one was made when I was in a coma following respiratory failure! Following excellent advice on here, plus yoga, pilates, a good palliative care team and consultant, meds, inhalers, etc. I'm still here and (mostly) living a good life. I'm so sorry things are bad for you now and your mh has taken a battering. There are so many here who can help and support you. Take time to breathe and regroup then decide how you want to move forward. (P.S. re. smoking, not nagging but if you haven't given up by the time your operation comes around they can give you aids to help in hospital and being hospitalised is an excellent time to stop. 🙂 )