Hello from newbie & a couple of Bronchiectasis pain/pressure related questions

Hello everyone :)

I'm new to this forum but not new to bronchiectasis :( Was diagnosed in 2010.

Am presently having yet another flare-up (since mid March) which seems to be taking forever to get under control - 3 different anti-b's so far, the last of which seemed to work. But now two weeks later I am experiencing different pain/discomfort - pressure under right rib cage area at front and pain/pressure in middle of shoulder blades at the back. And just a general un-well feeling. Have any of you had this type of pain after an infection? I've googled of course and scared myself sick ... tut tut!

I have an appointment tomorrow with the Doc to get things checked but wanted to know if this 'new to me' pain is common with other people who have bronchiectasis.

Well, thanks for reading :) Kindest regards. Z

30 Replies

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  • Zeprep welcome to the side I don't have your diagnosis I've got copd but I get tightness under my ribs and back a lot of people on here have the same as you and I'm sure they'll be along shortly to help and support you hope your feeling better soon best wishes x

  • Thank you very much for the welcome and taking time to reply :)

  • Hi zeprep and welcome to the site. I have had extensive bronchiectasis since I was three in 1953 so have certainly been through every scenario with it. Both of the pains that you describe can be due to infection due to an exacerbation. They can also be due to pleurisy. A sure sign of this is if the pain catches you when you take that last bit of breath in. The last time that I had a really bad pain in the bottom right of my chest was in Jan 2015. This was due to what is called an empyema. This is when there is a split in the pleural membrane and fluid from the lungs escapes into the chest cavity. It was caused by my walking round with pneumonia and pleurisy for 6 weeks and my GP not realising that I was so poorly until he saw it on an xray. It took me by surprise too and I am pretty good at judging the state of my condition. I also had the pain in my shoulder. You will have a fever if it is as serious as this. I tend to think that the antibiotics which you have been given are either the wrong ones for the bug that is in there or haven't been given in sufficient strength for sufficient length of time. We bronchs really do need the sledge hammer approach to infections.

    So I guess it would be better to go back to the GP. Suggest that he/she gets your sputumtested and an xray done just in case something like the empyema is happening. Also take your temp.

    I do hope that helps. There are quite a few of us bronchs on this site and we are all happy to help where we can whilst our COPD friends are wonderful with info on our rights, dietary advice and emotional support - not to mention the jokes, sharing their pets and gardens and general silliness which certainly brightens the day.

  • Thank you so much for the welcome and the detailed reply. I had a sputum test done and the doc had to ring the microbiology unit to find out which anti-b to use! He only gave me a 5 day course though so maybe I still have infection as I do run a temp off and on, but my cough and phlem seem to have cleared ??? The pain is not sharp nor worse with coughing, it's more of a pressure type pain that is constant. I had an x-ray last year, which showed 'some changes' but was suffering a heavy infection at that time.

    Oh well, I'll see what the doc has to say tomorrow, thank you again for the information you gave, it is helpful to know that it's not usual.

    Kind regards. Z

  • Hi Z,

    The pressure pain can be in the damaged part of your lungs when there is an exacerbation. Quite frankly five days antibiotics is silly. We bronchs need at least 14 days and a pretty high dose. Unfortunately, as you are probably discovering, GPs get little to zilch training in bronchiectasis. They get some in COPD which has different needs to us and even then they can get it wrong. I'm afraid that it is a case of gently educating the GPand getting them to give you what you need. I am presuming that you were diagnosed through a consultant with expertise in bronch. If not, get yourself one in your area. If you were, It would be a good idea to get an appointment with them and get them to write to your GP specifying which abs to give for which bugs ( the labs don't always find it) and in what dose for how long. This helps you and supports your GP. My GP recently saw an xray of mine and went into a panic because he thought I had pneumonia. My consultant said ' we know that's just how your lungs look don't we'. Bronchiectasis is a little devil, it has a mind of its own and plays with everybody differently. Yes I think it's back to the GP and good luck with that.

  • Thanks again Stillstanding63. I was diagnosed by a consultant (2010) and asked to be referred back to her last year, but the doc I was seeing at the time refused (even though the consultant said I could request to see her again if my symptoms changed or got worse). My surgery is not very good I'm afraid, and I rarely see the same doc twice. They have a letter from my consultant saying that I need at least a two week script and a back up script, but depending on which doc I see they seem to have their own opinion. I know I have to be a bit more assertive, but I find it difficult.

    I will see what happens tomorrow. Thank you again for taking the time to pass on your experience. Z

  • Oh dear. I would say change GPs but that is stress that you do not need. Everyone with bronchiectasis should be seen by their consultant at clinic at least every six months. It is not like COPD which can be looked after in the GP surgery if they and their nurses have enough knowledge. As you have found out GPs do not know enough to handle this condition alone.For your own sake I hope that you will manage to quietly insist that they read the notes from a consultant who knows more than them and also send you back to your consultant. As you are already under that consultant it shouldn't need a new referral so it might work to do what I do. Ring the consultant's secretary, tell them that you haven't had an appointment to see your consultant for ages and ask them to make you one. GP surgery being disorganised and obstructive is no reason for you to accept that at the expense of your health.

  • I wish I could go to a new surgery, but none of our local ones are taking on new patients. I wish I'd left last year when it was put under 'special measures' It is now supposed out of trouble. Hmm.

    I was under the consultant for two and half years, seeing her every 6 months but after a period of wellness was discharged.

    I will see how today's appointment goes then take it from there.

    Thanks again, I really do appreciate your time and response. Z

  • Let us know how today's appointment goes and we can have a think from there. Good luck, make sure you get what is best for you, not convenient for them

  • Oh and don't google! The info on there is rubbish and frightening. Most of the bronchs on here have been fighting the gunk boggart since they were children and we are still giving EVERYBODY trouble.

  • Hi SS I am glad you came in on this coz you are so knowlegable about bronch. From what I have read on here I was going to advise her to get a sputum test done as I know this can be a problem with your type of illness. x

  • Hello and welcome. Hope people on this site - and your doctor - can help and support you. Probably a better idea to listen to them than googling! Take care, Sue x

  • Thanks for the welcome :) You are right of course about googling symptoms Sue, can make you worry more! Hopefully doc can sort me out tomorrow. Thanks again for replying. Z

  • You say your Consultant invited you to come back if you had problems. Take her at her word. Ring or write to the Consultant's medical secretary and ask for an appointment. Give a brief indication of the reason. Just don't mention your GP.

    I did this and as my case was still live, I received an appointment just a couple of weeks ahead.

    On the point of Bronchiectasis it is worth reminding some GP's that you do have Bronchiectasis as they are far more used to seeing COPD patients and trying to lump us together. Nice recommends clearly that 2 weeks of full strength Doxycycline should be a GP first attack unless clear evidence not too. Maybe your sputum indicated another approach but when it did not work then you should have been changed to Doxycycline. Not the half dose either and two weeks not the normal one. I had to challenge a new local GP but in doing so politely and not as a know it all the doc was gracious enough to admit that I was correct and that she had been thinking of COPD.

    Good luck. Bronchies rule KO.

    Regards Rib

  • Thank you for taking the time to reply, I really appreciate it :) I was on doxy for two weeks but it didn't work, a week of cefalaxin didnt see it off so then had 5 day course of co-trimox. I did not know about NIce or any guidelines so thank you for that.

    Thanks again for the support. Z

  • Dear Zeprep. Firstly, welcome to this friendly and helpful site. I have bronch and had the same problem as you in that the GPs would only prescribe short courses of ABs and steroids. I asked my consultant to write to the practice saying that I needed at least fourteen days and at a much higher dose than they were prescribing. Since then, no problems with the prescriptions plus a rescue pack at home which is topped up when it is used. If you have a respiratory consultant could be worth asking them to do the same for you.

  • Hi Pentreath, thank you for the welcome & reply :) My doctors surgery does have a letter from my consultant saying that a two week minimum course should be prescribed but unfortunately I rarely see the same doctor twice and when I do point out this fact depending which doc I see they have their own opinion. Crazy I know! I think I have to be more assertive with them but find it difficult.

    Thanks again. Z

  • Ask them to check Nice guidance next time.

    Rib

  • HI Zeprep - I think if I were in your situation I would contact my consultant and ask for him/her to write again to the GP practice and ask for a 'flag' to be put on your records confirming that you need two weeks minimum. It is really counter-productive for the GP practice to keep doling out short courses that do not help you and just lead to repeat prescriptions and probably mean that you will be ill for longer and take more meds than if you had the correct amount to start with. Otherwise, ask for an appointment to see the practice manager to discuss the situation and get their help to get what you need.

  • good idea Pentreath

  • You are right of course, I do need to take more control.

    I will see what happens today, if I feel fobbed off again I will take it to the practice manager - I didn't even think of approaching it that way.

    Thanks. Z

  • Good luck with today, hope you do not have to take any further action.

  • Hello Zeprep, welcome to the site. I don't have Bronchiectasis but asthma & COPD. However, when I have an exacerbation I do have the pains you describe. In the past it has been diagnosed as, chest infection, bronchitis, pleurisy, pneumonia, Costcondritus slipping rib & a morallexa catarralis bacterial infection. Eventually, I had antibiotics for a 14 days and 8 oral Prednisone for 10 days. I keep pretty chest infection free at present but if problems return, I have Azithromycin 3 times a week for up to 6 months. I think people with bronchial use this as a preventative too. I hope it clears up soon. X

  • Thank you for the welcome and the reply, it's really helpful to know that these new symptoms I have are not uncommon. Last year I asked for Azithromycin as a preventative but my doc refused, said only a consultant could prescribe it, but refused to refer me back to my consultant!

    I have an appointment at the docs this morning (different doc) so I will try again.

    Thanks again. Z

  • Hello Z. So glad you're here. This is an amazing place. It has helped me feel less isolated.

    I can't really help with your question but I would say try not to Google everything. It just makes things seem so much worse. I used to and my mum made me stop !

    I hope you will be able to get relief soon.

    Sending warm rays of happiness!

    Cas ☀☀

  • Thank you Caspiana for the welcome and the reply.

    I really should not of googled, I've made myself sick with worry! Your mum is right lol.

    Thanks again. Z

  • Hi folks, just a quick update on today's appointment. I saw a great doc, unfortunately he's just a locum! Sent for x-ray and wants me to also have an ultrasound on my tum. Have an appointment to see him again next week but said that if I feel any worse he would see me right away. So it's a wait for results time.

    Thank you all again, I really do appreciate you taking the time to offer your support and experience.

    Z

  • hi Zeprep,

    sorry for delay in replying.

    Welcome and I do hope you are feeling a little better now.

    Unfortunately our GP's have to know a little bit about everything. Hopefully your local hospital will have written to your GP advising them of the a/b to prescribe you and for how long.

    I myself, have 3 back up scripts, all different a/b's, all for a different amount of days!

    Only you really know your body, be guided by how you feel.

    Get well soon & stay in touch. x

  • Thank you for your kind response :) I'm feeling little better in my lungs but still have this pressure feeling in my right front side/middle back.

    I'm back at docs next week for results of x-ray and will ask for a reserve script.

    Thanks again for taking he time to reply and the support. Z

  • Morning Zeprep,

    No problem on replying - that is what we all do - try to help & support each other.

    Make sure your reserve script has more than one a/b on it. My consultant told me long ago to alternate the a/b's each time I had a flare up, so that your system doesn't become immune to a/b. However all consultants/doctors have different views.

    I have both amoxil & doxy on mine and I just tick the relevant box if needed.

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