Hi, im new so hello to you all. Im 49 and in 2011 was told I only had 28% of my lungs left and have severe copd.

In 2010 I was a mum to 3 teenagers, a busy wife and also worked full time. I was very active, didnt smoke and regularly exercised. In july 2010 we went on holiday to cuba wich was fab but on return became poorly. After many hospital tests appointments exaserbations and ops I was diagnosed. My consultant reckons its quite rare but I got an infection wich was masked by th heat and this was the cause. I am virtually housebound cant walk round much so rely on my wheelchair and my family for everything. I am still really angry at times but take one day at a time. I had a really bad time last winter but have been really well since April, I love the warm weather. My symptoms are the breathlessness, i very rarely cough and dont suffer from phlegm, but am recently getting very anxious about everything and its getting worse daily I am worried and its making my breathing worse. Can anyone help, I dont know what to do.

48 Replies

oldestnewest
  • Hi McNally, welcome to the site before the day is finished you will receive advice, help, support, and anything you need to know, We all get angry there's nothing wrong with that. But you should see your GP straight away and tell him or her everything that is happening to you, It helps if you write it down as it happens. Good Luck hope you feel better soon. Mattcass

  • Thanks for that mattcass, I seem to have stabilised over the last few months and havnt needed to use my rescue pack since April its just this anxiety. I dont know were its come from and its getting worse, im anxious over everything wich is making my breathing worse. Do you think doctor could help?

  • Hi welcome to the site, I believe anxiety affects many people with copd why not give the BLF a ring. If you just click on the BLF logo at the top right of the page it will give you their telephone number.

    polly xx

  • Thanks polly, think I will but just feel daft !

  • Hi McNally. No need to feel daft sweetheart. It gets to a lot of us with COPD. Sort of occupational hazard really. Polly is right to say ring the BLF nurses, lots of us have in the past and they are good listeners. They can perhaps put your mind at rest a bit. Good luck with it.

    Bobby xx

  • Ah thank you for that

  • Hi McNally, never feel daft. Anxiety is a horrible thing, but you are not alone. Yes your GP can help. Do you have a respiratory nurse at the practice? most doctors have a nurse,s clinic each week especially for lung disease Yes BLF are brilliant to talk to so please do that. They will even phone you back. Take care, keep coming back to the forum, we are all in the same boat, and knowledge and sharing experience is a great thing.

    ingrid x.

  • Thanks ingy I am just concerned over this anxiety and I have just rang blf but they dont have anybody any more who deals with copd/anxiety just said they could send me leaflets of wich I already have, looks like I may have to go the docs x

  • Hi ,McNally,I' m ichyfeet,I'm new to this site too . Haven't been on for a few days as I've just got a new computer and struggling getting used to it! I was diagnosed with copd a year ago after a trip to china. Although unlike you I was a smoker but have been smoke free for14 months.I too suffer from anxiety and panic attacks. Inyoufact my anxiety is probably worse than my breathing. If you search anxiety or panic there are some encouraging posts on the subject.click on one of the highlighted words at the end of your post.best of keep in touch

  • Thanks ichyfeet I will do x take care

  • Hi McNally, Good to meet you! Sorry to hear that you are stuggling. I look after my husband who has severe COPD and in the last year his anxiety and panic attacks have become much worse and, as you say, are almost worse than the breathlessness. While we were on holiday in Cornwall a friend recommended BACH RESCUE REMEDY spray which he has found really useful. When he gets very breathless he is using the spray which seems to calm him down and then he can deal with the breathlessness - sometimes with an inhaler sometimes no.

    It might be worth a try?

    Have you ever been on a pulmonary rehab course? My husband has just started his second (referred from the specialist respiratory team or doctor) and is a course twice a week for ten weeks - one hour monitored exercise and one hour information. He has found this really helpful. Wondering if this could help you?

    Good luck with three teenagers - me too! Perhaps the BLF helpline could give you some advise and it might be worth a visit to the Doctors. Take good care. With love TAD xx

  • Thanks TAD I have been on the rehab course, a year ago it was but im noy very mobile at all but did get all the info, guess im just anxious about being anxious haha never ending circle x

  • It is a never ending very frightening circle - please try to ask your Doc for help. TAD xx

  • Hi

    I also suffer from anxiety.

    I was offered a morphine based drug which I declined as I like my driving to much.

    I was offered a low dose of Citalopram, which I thought strange, it is a anti depressant, and one of the side effects is anxiety, but it did work, I only used it for few weeks, when I started PR I also felt better, which inturn helped the anxiety.

    Speaking to the respiratory nurse, she gave me a. Thought Diary. The idea is you write down your thoughts at the time of your anxiety attack, over a period of time a pattern will emerge, which you can then discuss with you Doctor, to find a solution.

    It can be a long journey, one thing you can do, if it happens on a regular basis, at a similar time. Change what you do. I started playing games on my I-pad. It takes your mind in a different direction.

  • Thanks stone x

  • Some good advice already mcnally, I am surprised blf no longer have someone to advise with anxiety as it can be quite an issue. I know the Bach Rescue Remedy does help me when i feel very anxious. Good luck. You are in very good company here with wit and comedy along with help and support. :-) :-) Alison

  • I was surprised too, but im sure I will survive x

  • Welcome McNally, you have lots of good advice already. Do check with your doctor about your symptoms, you may be able to access counselling or something similar to help you with the anxiety.

    BLF pages on anxiety here:

    blf.org.uk/Search?query=anx...

    PR course or GP or Consultant referral to physio, also a good option to help you learn the breathing techniques that will help you become less anxious about being short of breath.

    Hope you get the anxiety under control real soon. Don't wait though, take action now.

    Best wishes BC

  • Hi yes I have all the info but It just came on me so unexpectantly and may I add my wonderful hubby to this problem. I think were both going through a rough patch ya know, why me sort of thing and feeling robbed of our plans but im sure we will make wonderful new plans, im 50 soon and we have booked a little holiday so somethin to look forward to. Thank you BC

  • Hi McNally, sorry for the reasons that have brought you here but glad to meet you.

    I'm 55 next week and my hubby took early retirement a couple of months before I was diagnosed. We had made all sorts of plans none of which have come to any furitution. Not just because of the copd but life has a way of making other plans for you.

    I was very angry when first diagnosed I already have a serious chronic illness and just felt I didn't need or deserve another. It took me awhile to adjust and believe me you will adjust and accept it also. Life will also make plans for you to follow.

    A visit to my gp in the early days of my illness ended in my taking an antidepressant (effexor) I'm still taking it just the starting dose it works for me. My brother had died in the December and I was diagnosed in the March so guess I needed something.

    There's a great bunch of people on the site I don't know what I'd do without them. So never feel silly for asking questions or if you want to vent, or just need some hugs if you're having a bad day there is always someone here.

  • Ah nanaber life can be so cruel cant it, I know I will be fine I have a lovely family who look after me, I cant believe I miss all the things I used to dislike doing though. I hate everyone else doing the housework they just dont do it the way I did! I just miss doin stuff haha n my hubby thinks hes a master chef!!!!! Writing this has made me smile xx

  • ZHubby is doing the ironing as I speak now that would make you smile;)

  • Omg xxx

  • Hi McNally

    Anxiety can be quite crippling. It and depression go hand in hand, I have suffered from both, generally I'm told, you either have mostly anxiety which can make you depressed as well, or initially depression that can then lead to anxiety.

    I had both pills and went for CBT counselling at different times.......... both helped enormously. Don't struggle alone, see your GP, if you can afford private counselling then go for that ... NHS counselling, which you can ask for has a huge waiting time ... 6 months+ or more (well round here anyway)

    You have the right to have help

    Take care, be safe and keep breathing easy

    Beth x

  • Thanks beth I will speak to my GP xx

  • Hi mcnally

    A very warm welcome to you. Sorry you have copd but glad you have joined us. I have a different lung condition but I have had panics and general anxiety for many years and I think many people do who have a chronic condition. I have found using cognitive behaviour therapy techniques very useful and there are many good self help books. No Panic and MIND have lists of recommended reading. You might want to ask your GP for a referral to a phycologist who specialises in cbt, but there is usually a long waiting list. I believe you can self refer to MIND but I am not sure if they use cbt or talking therapies.

    No Panic are very good and you can 'phone them 'till 10pm. The calls are answered by trained volunteers. They are trained not to talk about self - so if you get one like that just end the call and 'phone later if you wish when there may be someone more suited to you.

    nopanic.org.uk/contactus.html

    This is ruth Kaye. She is a healer who has worked for the NHS for many years and is presently working at St. James Hospital, Leeds. I have had the pleasure of attending her group meetings and the privilege of a few one to ones with her. The quality is not very good. The short meditation is online somewhere but I couldn't find it today. Hope you can relax and enjoy,

    Love cx

    Well that was a struggle - deleting - editing - losing stuff - AAAAAARG!

  • Hello, I was diagnosed 10 years ago at age 52 but the usual scenario of being a smoker, obviously I stopped immediately. I am now on the list for a lung transplant, perhaps that could become an option for you? Joining this site has become one of the best things I have done, they have answered my questions, given me a laugh along with lots of advice also the BLF who are marvellous. So surprised your lungs are in the condition they are being a non smoker but hope you get all the help you need to make you comfortable. If in doubt always ask and push for help. Good luck. Susie

  • Thanks susie xx

  • Hi McNally, on my last appointment with the respiratory nurse at the hospital I think she picked up on the fact that I was anxious. I do tend to have `worry` days when I feel down and then the next day I`m fine, up and fighting. She passed my name onto the local group of Mind. I don`t know if you have heard of them, or have anything like that in your area. A lady came to see me in my home yesterday and wants me to have a few sessions with her. I don`t know if it will do any good but whatever is open to me that will help I`ll give it a go.

  • That sounds really good I will be interested to hear how it goes, take care x

  • Hello McNally & welcome, you have a lot of really good advice from others & I would just echo the advise to go to your GP or your respiratory team regarding your anxiety. I would also recommend you give PR another try. When I first attended I was taken down the corridor to the gym in a wheelchair but by the end of the course I was able to walk the length of the corridor after undertaking exercise session. You will also find a lot of useful coping strategies from the education sessions & others on the course. What tests have you had? Are you under a consultant?

    Best wishes

    Jo :-)

  • Hi jo, I may give pr another go, and I have had every test going I think and an op on my lungs and I see my consultant at the liverpool heart and chest hospital every 4 months. My next app is in october I can speak to them when I go there too. X

  • I can understand your anxiety, I did get very anxious when first diagnosed but I got a lot of support from my respiratory team & have learned to live with my condition my lung function is 23% I'm on oxygen & can't walk far but still manage to get out & about with good family support. It's good to know you have had the tests, so many people are just told it's COPD & left to get on with it.

    Best wishes

    Jo :-)

  • I think I had all the tests because they couldnt work out what was wrong. I just collapsed one day and was in hospital for 3 weeks, I had never suffered with my chest before. I was tested for all kinds. I dont need oxygen because I can get enough in I just cant get it out? Feels like im going to explode somedays. What I need is a prescription to live in the sun, I am so much better when im abroad. X

  • Hi and welcome, as many others have written anxiety and lung problems seem to go hand in hand. I find meditation cds very helpful and I am having acupuncture treatment as well.

    I don't know what drugs you are taking but anxiety is a side effect of some of them.

    I have also tried the Buteyko Breathing exercises...there is a web site...or on You tube.

    Pursed lip breathing is helpful too

  • Hi, on my next hospital visit I am due to get my meds checked so I wil ask about that, keep well x

  • Hi and welcome mcnally. Sorry to read about your anxiety and also sorry I can't offer any more help then the other members have offered. I tend to get annoyed when I get short of breath rather than anxious. With time it becomes easier to control your breathing, I find. It's a matter of overcoming the minds natural subconscious way of dealing with it and control it consciously. I was diagnosed two years ago with very severe COPD and, like you, I hardly bring up any phlegm, unless I have an infection, so most of mine is emphysema.

  • I know it does get annoying because when you read about copd they constantly talk about the cough and phlegm wich I dont have x

  • Hi mcnally, welcome to the site , as you can see lots of good advice above. it's a very up and down illness, takes time to learn how to cope with your own needs with good management you can in time improve your general well being and the severity of the symptoms. Appreciate your feeling of shock it is hard to come to terms with in the beginning any life changing illness.The members are here for you and anger is a normal reaction to such a shock hope to hear from you more in the future.

  • Thanks, it sort of comes in waves, just when everything seems to be going well something happens and it gets me down but I am doing my best, its hard though when I want to do stuff with the kids like I used to, so many changes, I know I will be ok though x thank you

  • A big welcome to you McNally! So sorry to hear how your life got turned upside down.I have Copd & Peripheral neuropathy,started to get panic attacks about 2 years ago,& for the first time ever was put on Zoloft 20 mgs,so happy that I was it realy took the edge of it,& was able to stop after 12 months.I also find purse lip breathing a great help,reminding myself shoulders down,as you do hunch them up,when panicking.

    You have had some great advice,there are some lovely people here,always willing to lend an ear!

    Love Wendells xxx

  • Thanks and I do appreciate everyone taking time out of their day to chat and give advice, I do the pursed lips but somehow my shoulders start to creep up haha my hubby I always telling me off haha

  • Ha ha,I can empathize with that.But because I knew that would help,what I did (prob.sounds mad) was to go to my bedroom & sit on the edge of the bed,opposite the dressing table mirror,& watch myself,eg.shoulders,& eventually it kicked in naturally,keeping the shoulders down.It is such a big help.I don't have to take off to the bedroom now,when having difficulties!!

  • It doesnt sound mad at all, I guess we all have our own personal techniques but is good to hear what others do x

  • Hi McNally, that was a great post I enjoyed following all the replies. That is the thing with the site you get great support and info from all the members. I'm always learning something new from them. Hope you have a good day I'm off to see my son,DIL, and two little granddaughters so I'm hoping my lungs behave themselves and I have a good breathing day.

  • I hope they do to x enjoy your day x

  • Hi mcnally I just wanted to say hi and welcome to the site. I can't add to whats been said except to say there is an anxiety site here on health unlocked which might help you. Go into communities (next to your name) and click. A list of the others site available will pop up.

    Bev x

  • Thanks bev x

You may also like...