In the dark

I am new on here and to being diagnosed with copd, I found out about 6months ago I have copd but that was pretty much all I have been told, given 3 inhalers and sent on my way, I have been feeling unwell for few years now with symptoms of fatigue, muscle pain, muscle weakness, nausea, headaches, and when I get what I call a flare up just standing up leaves me weak and breathless, I have had all different tests done even saw 2 neurologists as thought possible neurological disorder but was all clear, my doctor has been unable to give me any answers for my symptoms, but I just this last week came across some info on copd saying that muscle weakness pain, headaches etc can all be to do with my copd!! Is this true? Does anyone know or have same? I need answers so I can help myself, I've been offered no other help or info for my copd, thanks for any input

20 Replies

  • Hi Kirsty, welcome to the Community. I am sorry to say that the standard reaction to patients diagnosed with COPD is just what you experienced. However you have finally come to the right place now. Forget looking for advice elsewhere, this is the site to Search or to post questions.

    There are a lot of folk at all the various stages of COPD and a good range of other lung conditions. Also the BLF itself has a free telephone number and a panel of nurses who can help you with urgent medical questions. This is  03000 030 555

    Regards, Rib

  • I have recently been diagnosed so am no expert but I do know I get knackered by the end of the day but different people get different things by all account. I do know exercise is good for you because muscles use oxygen and unfit muscles use more oxygen than fit muscles so that may be a starting point. Healthy food also helps but the biggest thing is to stop smoking if you are.  There will be some more knowledgeable people along soon to help.

    Oh and welcome, make yourself at home xx

  • Hi

    Welcome, as mentioned exercise and diet are important and no smoking. Have you been offered a pulmonary rehablitation course, twice weekly for six weeks one hour exercise one hour education. Have you been referred to a respitory team at local hospital, they are more up to speed with latest treatment and are more understanding of the effects apart from breathlessness which are associated with COPD.

  • Exercise wise I'm active most of the day as I have a 4yr old son, and I still manage to work 10hrs a wk, I did work 40hrs but over last few months it's got less and less, I have not been offered any pulmonary rehab, or referred to respritory team, think I really need to go back to my nurse and quiz her about everything and why I've been offered nothing on the blf passport, think I've ticked 2 boxes, thanks for the help

  • I hope that you are using your inhalers regularly as directed. The Salbutamol should help dilate your lungs and allow you to get more air into your body. Headache are probably caused by either lack of oxygen or stress in worrying about your health. Eating healthily will be a good start too. A diet list can be obtained from the BLF.

    Proper breathing exercises will also help both in oxygenating the blood and in controlling the effects of COPD. A search of You Tube for Breathing Exercise will find a choice of these.


  • I don't feel my inhalers do very much, when I take the sulbutamol it makes me shake so bad, my diet is poor due to nausea and what seems like very slow digestion I can only eat 1 meal a day, even if it's just a sandwich I can't eat again, really need help with it all so much to take in, thanks for your reply

  • I have a bit of the shakes myself when I have to use a large amount of Salbutamol but I consider it is better than my not being able to breathe.

    Eating more than a sandwich per day is hardly going to supply your body with enough calories to live, yet alone give you the vitamin and nutrition needed to fight COPD.

    I did click on your name so as to look at your Profile to see if you had any other health issues but your Profile is bare. I could not understand why you feel sick. Not a usual COPD trait.

    Glad joining is helping you.

    Regards Rib 

  • Hi kirstycampbell, a very warm welcome to you. I'm wondering if you've got a respiratory nurse in your surgery who you can chat to about your Copd?  

    It seems strange even your GP never discussed the condition with you. 

    I have  copd &  take 2 preventer inhalers & have 1 reliever inhaler. I have a rescue pack of abs & Prednisolone if I have an exacerbation to use immediately.

    I do not have nausea, muscle weakness, headaches but do get tired more easily. 

    I advise you to give the BLF a call & chat to an expert if you can't speak to your own GP. 

    Getting enough sleep, eating well, exercising, taking meds & absolutely not smoking, all helps to control the condition. 

    Wishing you well & hope you get the help you need. Let us know how you get on 🌷

  • Hi and welcome, I was wondering if you have an underlying infection.....have you had a sputum or blood test at all or do you have discoloured sputum ? 

    About the nausea....have you been tested for the stomach bacteria, heliobacter pyloris....just a thought. 

    I hope you find some answers and you feel better soon. ....take care

  • I have had many blood tests that come back fine, not had sputum test though, my sputum has been discoloured for months I have told my nurse this, and I have not been tested for any stomach bacteria, don't even know what that is, 

  • Hi Kirsty & welcome,

    Most of the symptoms can be eased by some simple changes and pulmonary rehab can guide and help with these - your GP can refer you to a local facility.

    Do you smoke (if so, stopping is the key to slowing the progression f the disease)? Has the GP advised you of the results of the spirometry test and, if so can you post them?

    Best wishes

  • I will have to go back and see my nurse and get these details, I have no idea what all my numbers are, I do smoke I've just been at Dr this wk and asked for champix to help me stop, I've tried patches and gum etc, also tried Allen cars easy way, and zyban which made me very angry and put me in a black place,

  • Hi Kirsty, stopping is key to slowing the development BUT, in my opinion (and I know others may disagree), getting used to the disease, learning to live with it, learning to love yourself again are probably more important and, once you are there then stopping will be easier.

    Don't beat yourself up just because you haven't stopped yet, just set it as a goal to achieve ... maybe by the end of the year or something like that. I understand the difficulty in stopping ... I smoked 40 a day for 40 years!

    I did the pulmonary rehab almost 4 years ago and my GP is arranging a repeat (it's a useful tool to help you learn to live with COPD).

    Good luck

  • Thank you, I have been smoking for 30yrs, and have tried many times to stop as I really hate it yet I can never picture myself in my mind being a non smoker, don't understand it, I really didn't take my diagnosis seriously at all, the 1 booklet my nurse did give me I shoved in a drawer and left it for months, stupid I know, I'm just so frustrated with it for last few yes I've just dug my heels in and worked 7 days a wk pushing through it but then be no use to my kids or husband, now I only work 10hrs and I'm still no use to my kids or husband lol, although I smoked I still went to gym 5 days a wk, cycled, went blading with kids, walked everywhere, and  do everything at 100 miles an hour, now I feel about 90yr old and just walking tires me out, sorry for rambling on, just struggling with it, I'm only 42 and feel like my life is over, even though I know it's not.

  • Like I said, beating yourself up about smoking helps to make you feel more depressed which is resolved by another cig so perpetuates the cycle. 

    Stop trying to stop until you have a clearer understanding of where you're at and what it's all about then maybe try setting a longer term goal to stop.

    Sure, every cig affects your lungs but worry doesn't make you better either! Get the facts, ask for a Pulmonary Rehab course as this will give you more information than you'll get anywhere (except maybe here ;-) , then, once they explain the effects you might decide that stopping really is the best option with some justification.

    Oh finally, my oxy is usually around 97%, at stage 2 (somewhere between 53 - 56%), working full time, constantly knackered but I don't let it dominate!

  • Welcome to the site, Kristycampbell, Can't really add much to what the others have told you. I only use a steroid inhaler. I do notice, I feel a little nauseous, after using it. Your nerves playing up, could be effecting your appetite. Did they check your oxygen level? Or tell you what stage you are? Mild copd shouldn't be causing hardly any symptoms. Hopefully we can answer some of your questions.       Rubyxx 😊

  • Didn't tell me stage at all,the only numbers I saw was my peak flow, the rest she just wrote down and didn't say, my peak flow was only about 150-170, My OXYGEN On The OXYMETER changes all time, roughly about 95-96, but doesn't add up to how breathless I feel most times,

  • Your peak flow is pretty low. Oxygen level isn't bad. Does it stay that high when you're moving around? Also they should have done the blood test to check for Alpha-1 deficiency.  Some younger people have this problem. You need to get copies of your numbers. Also ask what stage you are. We've all found, you have to be assertive. Otherwise they don't tell you anything. 😊.xx

  • Yes I'm going to go see her as soon as I can get appointment, I've never tested oxygen level while on the move wouldn't know how? I was going to ask about the alpha 1 also as my whole family on my mums side have chest problems, my mum passed away 17mths ago to lung cancer at 65yrs old, and her sister 2yrs before her to lung cancer, my mum had smoked but had given up 8yrs prior to that and her sister never smoked in her life, so there could be something there, thanks for the help

  • Hello Kirsty and a big welcome - you have come to the best place for friendly advice, and support . I have copd moderate, but the answers on here are from people with greater knowledge than I. Listen to your fellow members and follow their sound advice. We get treated as second class, not worth bothering about.  I nearly had to come to blows to get repeat prescriptons of my Salamol with a propellant I was used to instead of the other type which was making me poorly.



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