thanks !

thank you all for your welcome messages and your positve comments . Sorry if my question seemed trivial but I've never joined a group like this and was at a bit of a loss on how to start. Reading your questions and answers has helped me a lot . I was diagnosed with copd a year ago . I haven't found my medical care that helpful apart from support in giving up smoking .So can anyone tell me if the following symptoms are common with copd suffers.

swollen ankles.....panic attacks when walking, especially when walking in company....weight gain....anxiety

I use a ventolin inhaler and have been using a seretide inhaler for a month. best wishes to all and i hope you're having a good day x

27 Replies

  • Hi there Itchyfeet, remember, nothing is ever trivial here.

    6 months ago I was floundering in the dark and have learnt so much from being on the site.

    Yesterday I posted about my back pain and had so much support & it really helped get through the day.

    Now then. Did I mention Pulmonary Rehab (PR) classes and respiratory nurses?

    At PR you will get help with breathing tecniques to get you through anxiety or panic attacks.

    We do something called 'pursed lip breathing'. They will teach you this or, in the meantime you can look up pursed lip breathing on YouTube. You need to practice 4-5 times a day for at least 5 minutes and it should become automatic when you need it (a bit like swimming, riding a bike or driving).

    I too have Seretide, 250 twice daily for asthma etc (trying to get it down to 125 when 'well') and a blue one similar to Ventolin.

    It's really important to be taking the Seretide properly. It keeps your airways open and ventolin is for attacks of poor breathing and shouldn't be used more than 8 (I think, someone may correct me) times a day. I learnt at the PR classes that I've been taking seretide wrongly for 3 years! Most take it with a spacer which ensures you get the optimin dose.

    Your GP's will hopefully have a respiratory nurse who should be helping you. Check and make an appointment for all the questions you need answering.

    Thing is you will have to be pro-active at seeking help and advice from medics. They wont be ringing you up with results or offering assistance we sometimes have to push for it.

    I cant comment about the swollen ankles I'm afraid.

    If you're taking steroids they can effect your eating. I read here once that they confuse the button in your brain that tells you to stop eating of that you're full. Sorry I cant remember that properly (the information came from Gordon).

    I'm not overweight but I do work hard at it by not eating what's wrong for me personally (fat, sugar, processed food or too many carbs).

    You will find your way, perhaps with the help of the BLF helpline who are marvellous: 03000 030 555. Ask them all your questions, they wont think they are trivial at all :) all the best. P

  • hi peeg whats your seretide your on,i cant use mine in a spacer,

  • ah, Caroll, you may have the round flat one with powder capsules, the Accuhaler.

    I have the little spray inhaler that you can use with a spacer.

    A cons. put me on the accuhaler but I've just put myself back on the sprays - I had the notion that the powder one made my joints sore & made me more hungry.Probably all in my mind.

  • hi peeg thanks for reply,ye I have round1 purple twice daily,but only use it in morning as was doing something to my hands and back burning an hands painful,but doesn't make me hungry,have u copd and ive not seen a consultant yet as gps nurse blocks me an says/oh wen u need oxy then u see 1,is that rite,take care,psdont use ventolin at all don't no why just use seritide an elkira wich I had to ask her for ,for lung function up,really the service hear in Oldham is a shambles,

  • well that's weird about only getting a referral to a consultant if you need oxygen (I;m no medic) but I ve never heard that before. There will be dozens and dozens of people here who see a consultant and are not on oxygen.

    I've asthma and chronic bronchitis as far as I know & I'm seeing hosp doc on 2nd Sept for result of CT scan for a proper diagnosis then hopefully I can manage whatever it is.

    I think you could ring the blf helpline for advice on how to proceed with your GPs & the nurse. As soon as my GP realised that my lung problems weren't going to go away he referred me for a CT scan - mind you, that was back last December & I've had to struggle to get the scan from cons.

    you take care Caroll xxx

  • Hi

    Dependant on your severity, most people. Are three inhalers, Spiriva....... Seretide..... And ventolin.

    Side effects are common speak to your

    GP about your concerns.

    A good idea is to attend Pulmonary Rehabilitation classes.

    It is a 6 week course twice a week, involving light exercise and discussions.

    I am half way through mine and it thus work.

    Again speak to GP.

  • thank u so much for being so helpful Peeg . Hope you're doing ok x

  • thanks stone . asked my gp nurse re pr classes but she said I wasn't bad enough .

  • hi itchyfeet u must be mild copd if nurse said u not bad enuff,stop cigs watch for fumes an pollution outside an home,ppl with infections u be good for a long long time,did u have a spimerty test wat was ur reading,take care

  • maybe ask your GP for PR itchy, or consultant if you see one.

    I've just finished my PR and told them I was a bit embarassed that I might not be bad enough and they reassured me saying that the new thinking was to try to catch people early to prevent avoidable damage. I would put it to them this way, say you want help to stop getting worse.

    good luck x

  • I remember that Caroll, that was really poor. What a waste and a shame for you

  • thanks peeg was a nightmare listening to her think it was a different nurse not a blf nurse all dressed up all blue an blue hat an obese .get myinfo of hear now with no torture lol,but now get mail of mcmillans to donate,my son takes an cheks the mail 1st now and sees were mail is from,dont no were they get addresses from me,take care

  • Very important peeg, its in the interests of GPs etc to catch us early as possible as in the longer term it will save NHS money on treatment, and WE, well ive had copd 10 years, but the newly or fairly newly diagnosed absolutely need PR asap to preserve quality of life as far as possible. its a win-win situation all round, but sadly some GPs dont recognise this and often there just arent enough PR classes to go round :(

  • good for you, they sometimes do need telling, otherwise they think they are doing fine when we know differently. you take care too.

  • HELLO O2 trees, how are you? Glad you're still around :-)

  • Hi peeg, nice post thank you! just sent you a PM but i think it came back to me instead!? Let me know if it didnt get to you xjean

  • Interesting about the medications. I'm on Spiriva, Seretide 500 & Ventolin and as I said on another post I'm classed as mild/moderate. I also had a nebuliser a couple of months ago, but definitely convinced I don't need it long term.

  • Anxiety and panic attacks seem to be quite common, I feel worse first thing in the morning I find, and don't like walking very far by myself.

    I think anxiety can be a side effect of the medication too for some people.

    The pursed lip breathing is good, and helps with the breathlessness and panic.

    Ringing the Helpline is a good idea. Best wishes

  • thank you knitter will try to find more out about pursed lip breathing. keep in touch.x

  • Hi, I have had copd now for 10 years, wish I had known about this site then, they are all so helpful and friendly. I am now quite severe and am on the list for a lung transplant. Your symptoms. seem like it could be your medication. I am on anti depressants but they are because my husband has a mental heath illness and is difficult to cope with. Panic attacks I only get when I start having difficulty breathing which I think you will find the pursed lip breathing exercises helpful. Weight gain seems unusual as you use so much energy trying to breathe but if you are on steroids then that could be why. I do occasionally get swollen ankles but then just raise my feet for a while. Unfortunately this is an illness you have to grow into and make the most of it as it does not get better. BLF telephone line are a great help but if you get a good respiratory nurse you'll find they are the best ones for help a nd information.Just don't let this horrible illness make you an invalid. You will learn a lot from this site and know what to ask the professional. Good luck and take care. Susie Q

  • thanks seyre. Your comments were really helpful. I feel so ashamed when I hear of others situations. You certainly have made me think that this illness shouldn't overcome me yet and i should try and make the best of what I got now. iwish tou and your husband all the best . Please do keep in touch

  • Do not feel ashamed, we all have bad times and think no one is worse but there are many of us in different stages all just wanting to have the best life possible. We need to stick together and make the best of what we have. Listen, learn and ask. Take care Susie Q xx

  • Hi ichyfeet, I get swollen ankles but it's not copd or the inhalers it's caused by another illness, so medical advice is important for that symptom, many things can cause weight gain.Another side effect of inhalers that can't be used with a spacer is hoarseness and sore throat, mouth wash and gargles tend to help this. Feeling panicky when breathing is bad, is not unusual, be careful not to use your ventolin too much as that can cause nasty side effects too. Eight puffs a day is the maximum dose recommended, if that's not working you need to see your doctor.By the way I take the three inhalers as mentioned, my accuhaler is seretide 500 as I have problems using the normal type inhalers.Hope to see more of you in future on the site and trust the info helps.

  • Hi itchyfeet .I hope you have made some friends and had your questions answered. I have had COPD for 17 years now and can follow what most people are saying. How ever I don't do medical myself as I do not feel that qualified.

    I just like to spread a little joy with some light humour.

    Take a look some time


    Your daily tonic

  • and you do spread joy and cheer us KOTC :)

  • Hi itchyfeet I can't add to what's been said I just wanted to say hi and welcome to the site. Hope you will get a lot from it.

    Bev x

  • Hi itchyfeet, welcome to the site. Looking forward to getting to know you.

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