Help please

I'm so disappointed, after seeing NWLC yesterday they have decided I have a bad breathing pattern developed to protect my lungs. Its only seen in patients with asthma apparantly. Explains why I've struggled with inhalors and the only thing which has worked has been a nebuliser. Problem is they won't touch my asthma medication. Solution is physio which can take up to 18months to work and is likely to hurt. Until I do this they won't alter my asthma medication as peak flows & lung fuction tests don't give an indication of how my asthma is. I just don't have the time to do this I meant to be starting a new job in a few weeks ans ivf in the middle of the year. Without getting off the pred losing the weight to start the ivf is going to be nearly impossible.

Has anyone else had this problem? I need a quick fix. I'm desperate to start controlling my life again and the only way I can is by stopping all my medication. I just don't know what to do, time is the one thing I don't have.

Should I be honest and get back in touch and say I'm not happy to do the physio. Not sure what will happen if I don't sort this 'breathing problem' out. I think I'm so upset as I'm finally admitting how badly asthma is affecting my life. Nebbing up to 4 times a day takes time. I'm scared as I've been told measuring peak flow in my case in useless so that puts my action plan out the window.

I just feel like life has kicked me yet again. I appreciate I'm better than many of you but it still hurts.

Any advice would be helpful.

4 Replies

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  • My first piece of advice would be do not panic! It will only make things worse.

    I am in a similar position as you, only nebuilsers work for me and everytime i do spirometery test it is almost perfect yet i am still told i definately have asthma.

    Do you breathe in and out through your mouth?

    Or do you breathe in through your nose and out through your mouth?

    Have you been told what the physio will involve or only that it will hurt?

    Do not stop your medication it will not get you any where!

    I know nebs take time but if they help you breathe they are well worth it.

    The only quick fix is to keep doing what you are doing and try the physio while also starting your new job. Also go back and ask for an asthma plan so you really want one and explain you are about to start work and want to be able to do it as it is important to you. Tell the doctor all your concerns.

  • Thanks for all your advice. I've contacted the NWLC and am waiting for them to get back in touch with another appointment. Doesn't look like it will be quickly so I'm thinking of finishing there and continuing with my local hospital. I'm not prepared to give physio another go so in the absence of anything else I'll try and reduce my medication myself.

    Hopefully I'll start to feel better once I'm calmer!

    Take care

    Rabbit

  • Physio

    Hi Rabbit

    Sorry to hear you are having such a bad time. I have not had your degree of problems with the asthma, but I have had Physiotheraphy, which involved learning to do diaghram exercises (please excuse the spelling). This so far has taken 3 appointments, but I have found it really helpful and has not hurt. It has helped me to monitor when I am breathing to shallow during an attack and starting to hyperventerlate as well as having asthma, which has helped and made me feel more in control. It does involve practice of the exercise at home but this is not a problem as you can do some of this whilst watching TV. Asthma UK had a really good article physio exercises a while back.

    I hope this helps a bit and hang in there.

  • hi rabbit,

    Sorry to hear that it sounds very frustrating!

    Are you seen at the north west lung centre? (Wyenthenshawe?) just one cheery thought the physio who works with prof Niven is very nice and - quite - good looking. He taught me loads of chest clearance stuff when I was diagnosed with bronchiectasis.

    Sxx

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