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British Lung Foundation
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Update no better

Well update. Still very breathless all the time even when talking. No help anywhere . Really scared if I am meant to be mild I don’t know how you all cope at later stages. So frustrated as I am doing all the right things to help myself. Constant sore throat and losing my voice they say from acid reflux. X-ray came back normal. No clues what’s going on really worn down now and cry at the drop of a hat . Anyone help with ideas been 2 months now ?

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Do you still smoke Vonnie? Are you on any inhalers? And, maybe it's anxiety and depression ? Have you been checked for those?

Meg

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Hi meg gave up 5 years ago and I am in symbercort and spiriva since diagnosis in Feb 2018 x

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Symbicort has side effects of sore throat, loss of voice (and or a frog in your throat feeling), sometimes a cotton ball feels as though it's stuck also, same with the Sprivia. I think most inhalers either pump or powder causes those issues. Symbicort also...acid reflux....I do not know anyone who isn't on Nexium...lol....I am not....so far....great for not smoking...all research is pointing towards emphysema stops progressing when you quit....except for normal aging. I would ask your physician about your anxiety and depression, there's alot to help that, and it could very well help with your breathing.....nerves can cause so very much. And, have a check up to make sure your ok....always helps thoughts.

Meg💕

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Hi vonnie50, have you had a referral for a CT scan? Been tested for underactive thyroid as that can make you hoarse?

I'd sit in the doctors until they do something, definitely ask for a referral to a breathing specialist. Hate to say it could take months but if you have a few £100s ask for a private referral and you'll be seen next week. Just done this with my mum as her apt was 6 months away and she was seen within 5 days....

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They say my lose of voice is due to acid reflux and going for barium meal X-ray soon . I am on antidepressants all ready and unfortunately my dr doesn’t even listen to my chest just prescribes a multitude of things.

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I have appointment at royal Brompton in London February

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Hopefully they will get you a CT scan to determine re your lung problem and treatment. I have to gargle with warm salt water now after inhalers particularly in winter to ease my throat, I feel throat losengers make it worse. Acid reflux is very common with COPD and it’s hard to say if it’s that half the time or the lungs? I blame a lot on acid reflux but as it’s always worse this time of year I just don’t know now !

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I agree with acid reflux being a big problem I am up every night in pain with it and I never eat after 6 pm also my hernia acts up a lot too. I hope we all get some answers x

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Hello Vonnie. Sounds to me like a bad dose of anxiety. I’ve suffered from this awful condition a number of times in my life and I know from experience exactly what it can do to you. Headaches, breathlessness, aches, pains, dizziness, panic attacks that make you think you’re about to die, palpitations, social phobias, they’re all on the list of symptoms. If your doctors have properly excluded all the physical possibilities then maybe you should go back and suggest that anxiety may be the cause of your breathlessness. A close relative of mine who has endured a number of serious operations plus the loss of a parent has been suffering from crippling anxiety. But she sought help from a well known private clinic and now six weeks later she is almost back to normal. So there is help out there. Maybe a trip back to your GP and a discussion about the possibility of it being anxiety related could be a step towards getting better.

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Thank you for your response greatly appreciated. I am getting more stressed socially and don’t go far at all but really beleive this is due to my breathing being so bad. Makes me on edge to go to far. Xx

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Great advice

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I agree I developed panic attacks and constantly thought I was going to die they put me on lorasapam and I was on that for a year but my doctor took me off fearing I would get altimezers or dementia. Now I have to do meditation it takes longer but finally don't have to go to hospital every two weeks. Those panic attacks are the worse.

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Hi Vonnie. I'm sorry to hear that (but understand completely). It's pretty much the same for me here. I've got more diazepam from my psychiatrist to tide me over until I see a consultant. Keep doing your best and please know that I'm here to talk if you ever want or need to. xxx

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Thank you Hun it’s really not good at all is it ?

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Nope. The GP I saw last (who has referred me) thinks the breathlessness may be caused by "dysfunctional breathing" rather than airflow limitation. Could be true (we both have pretty severe anxiety) but that leads neither me nor you any closer to a solution! It's exhausting. I'm sat on the sofa now gasping and my ribcage is so sore then when I get up to walk around or if I lie down I'm much better. I'll def keep you updated. xx

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Please do something must help us both x

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Cathhyh1957 I do agree with all these women I have had anxiety and Panic Attacks most of my life. I have been on Alprazolam most of that time ,but about a year ago with all the scare with pain medication in the US they decided to titrate me off of it since you can't have 2 things wrong with you* but after a week is when the breathing problems started and they slowly put me back on 0.50 mg twice a day it helped a lot but still having problem with learning not to hold my breath when I am stressed. You need to talk to your GP and maybe he can refer you to a Psychiatrist they can help you much better with that problem. Good Luck and keep slow breathing and relaxing

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Thank you for your honest and informative reply highly appreciated. I have been on anxiety meds since I was 20 due to violent husband at the time.cant seem to manage without them x

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Hi Vonnie I’m hoping folks on this wonderful forum will steer you toward the right direction. Please stay well and one other thing I may ask . Why is your doctor not listening to your lungs ? I would think a good doctor who has a patient with lung disease would first and foremost listen to one’s chest. I don’t understand that. Again listen to SJT73 and sit down with your Docs and go over everything. My doctors, both GP and Specialists sometimes spend as much as 35 minutes per visit with me if need be. I don’t know the rules if any , in UK , but your doctor needs to listen to you and your issues. Stay well Vonnie and good luck to you

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Hi only 5 mins for emergency appointments and 10 for booked regular. I try so hard to talk to him he doesn’t listen . Can’t wait to go to London appointments. Hope your good x

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Good luck to you Vonnie. I’m sure your London appointments will go well and will get to the bottom of things

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Thank you so much x

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Even mild can be bad are you on oxygen yet? If not maybe you should be wearing it when you do house work or shop any activity rest as often as you can. The smallest things will make it harder to breath. You are not alone in your struggle. Have they got you on nebulizer medication that your breath in thru the machine or just the puffers?

.

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No oxygen and no nebuliser just inhalers x

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Scary stuff x

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I was on Symbicort years ago and it always made my voice very hoarse. I believe Symbicort has a steroid component and am surprised you would be on a steroid if you are only mild and maybe something to ask the doctor about when you see him/her.

Good luck with your appointment.

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Thank you . It was my dr put me on that before I was even diagnosed

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I feel for you, no wonder you’re in a state, being unable to breathe inevitably makes us anxious! As a fellow Brompton patient (for a different lung condition) I’d say, bear with it at the moment & count down the days to your appointment. They’ll probably want to confirm the diagnosis first of all, and then suggest a treatment plan to improve your condition & keep you stable. They’ll also write to your GP with detailed instructions on how you’re to be managed in future, and of course you’ll be followed up regularly in Outpatients. The Brompton is a brilliant hospital, consultants there are all experts in their specialities, and the nurses & pharmacists etc are all respiratory trained too. From my experience they leave no stone unturned in their efforts to make you as well as possible. Have hope, Vonnie!

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Hi it was there I was diagnosed as my doctors said my results were ok and that I had allergy’s. Royal Brompton did ct scan plus usual tests and said upper lobes mild Emphysema. That was February last year. So this February is my second appointment. I am counting the days definitely xx

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Oh I see. Things have got more complicated then, hopefully they’ll investigate and find out why. I’m having quite a setback too and waiting for some tests. Like you I’m going in Feb. Such a bad time of year for lungs, the cold air is a major problem for me and any exertion at all makes me scarily breathless. So I’m anxious too. Good luck with your appointment

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And good luck for yours too. Hope we get solutions quickly x

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When first diagnosed, I felt breathless a lot. I got a home oximeter and checked my oxygen level & it was usually fine, which helped me relax & after a while, I only felt breathless on exertion. Maybe try one of those. Hope you feel better soon.

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I do have one and my levels are fine. Thank you for your reply x

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See with BLF helpline or website blf.org.uk/support-for-you/...

Worth making a doctor’s appointment.

Take care of yourself Vonnie.

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I will take a look thank you

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