Why Do I Keep Getting Pleurisy ? - Lung Conditions C...

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Why Do I Keep Getting Pleurisy ?

ConfusedAsthmatic profile image

Why do I keep getting pleurisy ? I don't smoke , never had , no history of asthma - I was hospitalised in June and given an x-ray confirming it was in the bottom of my left lung and I was given six steroid pills and two sessions on a nebuliser . Then my GP said I had asthma . I'm a woodwind player ! Have been all my life and my peak flow can easily hit 550 and now my GP yesterday said 300 was very low - when I was in hospital , I couldn't blow 125 ! I've been given masses of steroid pills to take on a tapering off basis over the next 14 days and anti biotics ( no NSAIDS as I have had stomach ulcers ) . I feel like my throat is full of razor blades and I feel like they're ripping my throat to shreds . My chest hurts so much I'm shallow breathing as far as possible although I know deep breathing now and again is important . I've read pleurisy is an after effect of pneumonia which I know I've never had . I feel so ill and I am also being pushed by the NHS into having nerve blocks into my spine very near my right lung which , I've been warned could damage that lung too . So I've gone from a lifetime as a working musician to someone who can barely croak out a few words and I don't want to make decisions at this time . If I keep getting pleurisy , I've got no income and no voice to earn a living and now the NHS want me to make a possibly life altering decision ! Until I know WHY I keep getting pleurisy , I'm not risking my right lung too ! I don't play anyone else's instruments and my own are disinfected before and after I use them ( which isn't much anymore . I really , really need help . I feel bullied and poorly informed . This is my life the NHS are gambling with and they don't want to tell me anything . Can anyone help me please ?

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Izb1 profile image
Izb1

I am sorry I cant help you ConfusedAsthmatic, as I have never had pleurisy but I am sure other members will come to your aid soon and welcome to the site. It sounds like you are having a terrible time of it and I dont blame you for doubting the advice you have been given on a cure. I would search all avenues before going down that road. My brother in law, who was a farmer had this many years ago and their local chemist, who was of the old school gave him a pot of ointment (not sure if it was a kaolin poultice) that he put onto gauze on his back overnight for about a few days to draw out the infection. I dont know if this was an old remedy but it seemed to work for him. I do hope you find something to help and soon x

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toIzb1

We still use kaolin poultices to draw infections from horses hooves so I've plenty of animalintex !

Izb1 profile image
Izb1 in reply toConfusedAsthmatic

Not sure I would use something intended for animals, perhaps check with your doctor first x

knitter profile image
knitter

Ok, I can sympathise a little ….one of my asthmatic daughters was a flute player and exacerbations , flare ups , were debilitating .

Can I ask some questions , do you mind ?

What were your first symptoms …..cough, shortness of breath , pain, fever ?

Do you cough up mucus ….if so what colour ?

Pneumonia wasn’t mentioned ….just pleurisy ?

I have had both in the past .

Negative for Covid ?

Are you using any inhalers ?

Are the steroids and antibiotics helping ?

Can you take other pain killers , not aspirin I guess if you had a stomach ulcer before . Are the steroids you take the red coated ones , more stomach friendly . Always eat something before you take the steroids . They can affect my mood too ….elated but bad tempered .

I found warmth on the painful place helped….a hot water bottle wrapped in towels , I have a heated pad I use for my poorly back.

The BLF have a website with lots of information , the NHS websites are reliable too.

Have you an appointment booked for a check up when steroids and ab s finish , to see if you have improved?

We’re you given a peak flow meter to use at home ? Advised to buy an oximeter to check oxygen levels?

On Monday the BLF helpline is open for UK residents on 03000 030 555.

I know you saw your gp yesterday, but do you think you need to ring 111 for advice today, especially if you get more breathless.

My daughter is fine now , mountain climbing as a hobby .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toknitter

I've been a professional musician for 47 years and I didn't get pleurisy until June this year. No , I've never had Covid and and double jabbed as the whole family are . Until June this year , I've never had a cough in my life , not even when I've had a cold so no , never had phlegm and no , I cough nothing up now anyway , there's no phlegm with pleurisy - that's why I'm a confused asthmatic as my husband has suffered with asthma for 67 years - he's never had symptoms like mine - I feel like I'm being stabbed in the chest when I cough and I don't shallow breathe all the time but if I took deep breaths all the time , normal breaths , I'd pass out with pain . I've now been on antibiotics for 5 days - I'm allergic to penicillin so doctors have to play Russian Roulette with them until they find one that works . My prednisone is just white , enteric coated tiny pills like my husband takes - never seen any red or pink ones before anyway . I am married to an asthmatic so the house is full of peak flow monitors - my own one still reads 300 - it's the best I can do atm - I used to blow over 600 . My husband has struggled all his life to hit 150 so I know my peak flow is usually very good . Yes , we have an oximeter because my husband is asthmatic, by blood saturation levels are good . Even when I had a fever with this thing , they were still good . I am on co-codamol because I have colitis and they're the only meds that control diarrhoea - I've had IBD since I was born most likely but it's well controlled . I also take pregabalin as the nerves in my extremities are deteriorating - peripheral neuropathy caused by years of playing guitar or violin - the RSI is worse than using a computer by far .

I've had stomach ulcers so no aspirin or NSAIDS are allowed .

The first symptoms were breathlessness last June that necessitated that we call an ambulance at 2.30am as my airways closed up and I couldn't breathe - I was turning blue . The same thing happened at 2.30am five days ago - this time , trying to swallow was as though I had a mouth full of razorblades - I did not cough up any phlegm I just coughed until my airways began to close and then got the nebuliser on .

I feel OK as long as I stay warm and don't move . The GP said the hospital had not tested me properly , that the pleurisy was bacterial and required a more aggressive attack and they'd treated it as viral . The hospital wasn't busy , just didn't do much other than give me six prednisone and told me to visit my GP . I did ; she declared me asthmatic ( which I'm not ) gave me more sprays which make me feel worse ( a blue one and a brown one ) and I refused to use the brown one as it stopped me singing . This is how I earn a living - I'm a musician and suddenly , I'm not .

Now the NHS want to inject into my c6/7 vertebra to " relieve" the pain they caused when they botched my rotator cuff surgery last September . The surgeon who performed it is on " long term leave" . The anaesthetic failed and leaked into tissues in other parts of my hand and arm and I was conscious but paralysed throughout the operation .

I am reluctant to take their pain injections as there is potential to cause damage to my right lung - my left lung is already now susceptible to pleurisy so who in their right minds would risk their right lung to that kind of damage . 3/4 of me is fuming with the NHS for their incompetence but it's important that when I see them tomorrow ( the shoulder surgeons replacement) that I don't apportion blame , I just want a way through this to at least the ability to breathe , sing and play woodwind instruments . I've been playing since I was 7 - not playing is like having my arm cut off . My flute is an extension of my body and personality , I don't just " play" the flute , it's my job , my livelihood and my life .

I'd never even heard of pleurisy before June and I've never had pneumonia or any breathing problems . Professional woodwind players don't just suddenly lose their ability to blow unless they suffer a catastrophic accident , which I hope I haven't unless it was during the botched surgery in September 2020 . I've had enough really . If I can't stop this , what will I do with my life ? I can't suddenly magic up a new way of earning a living . Lockdown was bad enough but at least I could play even though I couldn't play publicly or teach . Where has this come from and why has it come back and what is the long term prognosis ? I just want to understand but no one is honest with me .

slram profile image
slram in reply toConfusedAsthmatic

Pleurisy will not respond to antibiotics.

Bevvy profile image
Bevvy

I also have regular bouts of pleurisy which is debilitating and severe. And no like you have never had pneumonia preceding it but am aware from doctors that usually that is the case. In fact the one time I have had pneumonia it didn’t develop into pleurisy!Personally I believe the first attack left me with a weakness which means that other chest infections are highly likely to develop in to it.

One way I have of trying to avoid this, is that I have a rescue pack of antibiotics and steroids at home. This means that I can start treatment as soon as I spot anything untoward and not have to wait for gp appointments.

What are nerve block injections for? Back issues? I was offered these but decided against due to risk and also fact they don’t necessarily help. I certainly wouldn’t have been happy making decisions like that when extremely unwell and would definitely have put off any treatment.

You really need to try to avoid shallow breathing because this won’t help.

I find hot water bottles and heat pads can help with pain.

Other than that really the best advice I can give is to rest and rest again. I know it is easy to try to “push against “ it but that is likely to make things last far longer and put you at more risk.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

I have already taken on board and done everything you've suggested but it still gives me no answers . I want to know how to prevent this happening. When my breathing feels as though razorblades are being thrust down my throat and I'm being stabbed in my back and chest , all I can do is shallow breathe . As a woodwind player for 47 years , shallow breathing doesn't come natural to me but sometimes it's either that or not breathe at all . The suggested injections into my spine C7/6 are to relieve the pain caused by a botched rotator cuff operation last September .

Bevvy profile image
Bevvy in reply toConfusedAsthmatic

Is VERY difficult to state how can pleurisy be avoided? One thing is to try to stay away from people with coughs and colds. Also as everyone should be doing these days lots of hand washing can benefit.

I wonder if these issues from June weren’t totally treated and that is why reoccurrence has happened? But we are not doctors here so I could be wrong.

I honestly don’t think doctors are being difficult and deliberately not giving you a long term diagnosis. I don’t believe they would know at this stage.

I understand totally your concerns re employment. Even though I am not a musician I also had concerns and yes to some effect because of recurrent bouts I had to alter my employment. That is reduce my hours and look at other ways of managing my situation. BUT I believe you are a long way from that situation. Obviously whilst you are as unwell as you currently are, it is very difficult and I hope that family and friends are able to help.

Have you discussed with gp your concerns? It may be that they will refer you to a respiratory consultant who is more specialised?? Although these days the waiting list on NHS is likely to be very long even if referred as urgent.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

Thank you for understanding - I'm 63 so not really in the market to be retrained but old musicians never die , they keep on playing for the hell of it . I live in almost total isolation with my husband and don't have a social life - who has for the last two years . 😉

Patk1 profile image
Patk1 in reply toConfusedAsthmatic

Sore throats are usually viral

peege profile image
peege

I'd like to ask another question, which antibiotics have you been give and for how long?

I would definitely give the helpline knitter has given you the number for on Monday. I've had pleurisy 4 times, always in the same place and 2 of those came before pneumonia not after.

NB we're not medics here, just experienced patients or carers of patients with several different lung diseases at different levels.

I've not had it for years now. I learnt (from some members here in 2013) that my immune system must have been wiped out & recommended a regime of vitamins and supplements - many of which I still take to keep me well. Of course whilst killing bacteria antibiotics also lower your immune system (and gut bacteria which is definitely not what you/we need.

My bad years were 2009-2014/5, constant chronic lung infections including 5× pneumonia.

I've fought back with high billions of prebiotic every time on abs. Plus have a daily regime of vitamins, minerals & supplements (all of the above have left me with CFS (chronic fatigue syndrome)) .

For you if you take only one thing take effervescent vitamin C 1000mg twice per day.

BTW my daughter's 1st covid symptom was razorback throat March 2020 so get plenty of free LFTs in while you're low. Good luck. P

Bevvy profile image
Bevvy in reply topeege

Some good suggestions there Peege and agree that trying various vitamins could help. Would also add that zinc can be helpful as well. Also yes is recommended to take prebiotics or live yoghurt whilst on antibiotics to add good bacteria in our systems.

Ps if someone has symptoms of possible Covid they shouldn’t do a LFT. They are really if you have no symptoms. They are saying if got symptoms people need to do a PCR test which is more reliable.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

Ive been fully tested for Covid on at least 8 occasions as I've had to attend hospital a lot this year . Fortunately , I have not had it and nor do I have antibodies for it . I already rattle with vitamins , but I can't absorb B12 anymore because no one on a PPI like Lansoprazole can ( given after stomach ulcers ) so my energy levels have been low for years and years . Some GP's give me B12 injections to boost that , others don't seem to care . No matter how much folic acid I take or how much kale and spinach I consume , my iron levels are too low as are my Vitamin D . But everyone's who lives in the northern hemisphere is D deficient cause we don't get enough sunshine . The antibiotics are Doxycycline . Yes I take co- codamol 30/500's as these control my colitis . I am not anxious , I am worried but I understand breathing techniques as woodwind players have to otherwise we couldn't play . Relaxing the throat is a well known singing technique. Mindfulness is not something that works for me because I can't concentrate on one tiny thing for five minutes - living in the moment isn't an option and never has been . I have to be able to plan and mindfulness requires total ability to live in the moment. I'm afraid I will never be able to do that although I've tried . I can meditate as long as I'm doing it with a group of others . Otherwise my mind wanders where it shouldn't like " have I turned the gas off , put petrol in the car " . The only time I practice mindfulness in any form is when I'm playing free form music which I can't at the moment cause I can't play anything . Nothing is being created by this embouchure and I cannot sustain any notes due to my peak flow being useless . I am resting , restlessly . Resting is mentally a bad strategy for me as resting doesn't get anything done like the house cleaned or meals on the table . All I really want to know is WHY this has happened , what can be done about it and how do I approach the whole thing with the NHS ? I'm not a person to them , I'm living proof they're not perfect as they've messed up an anaesthetic in my shoulder op and they pass me from pillar to post as I get sicker by the day . Authority with no accountability annoys me . If I was a crap musician , I'd be sacked - if I didn't know my Doric from my Aeolian scales , I'd be sacked . The body is a complex machine , mine is being treated like an Apple computer where all the sections are compartmentalised so if one section fails , it doesn't seem to matter . With Microsoft , if a section fails , the whole computer fails . We are holistic beings - not compartmentalised machines . I'm so fed up of sleeping bolt upright in order to make sure the pleurisy doesn't turn into pericarditis . I'm not overweight , never smoked and was fine until the NHS gave me that anaesthetic that went wrong , back in September 2020 .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

Thank you for your good wishes - just called 111 and had the ambulance team here who have done my sats and told me how to get through tomorrow at the clinic . My back is in pain but that's easing after some additional meds . Hope to get through the night and see where we go with this . My daughter has just pointed out that my breathing difficulties began when I had my first Covid jab - in June .

Bevvy profile image
Bevvy in reply toConfusedAsthmatic

Just to say that I have no doubt that Covid jab has absolutely nothing to do with your condition!I wonder if poor treatment with shoulder and ulcer actually meant you contracted pneumonia whilst in hospital (you mention fever in hospital)but no one realised??

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

That's my thinking too but she's hard to argue with especially when people are dying in front of her after having Covid jabs . People have died from them , there's no doubt that is true but I am not dead - hopefully not yet anyway . Yes , I suffered with a fever that left me frozen to the bone , couldn't get warm at all but I was ignored by the night staff until my husband rang up at 2am - still no doctor called or obs done but a pile of mucky blankets chucked at me - gotta love our great NHS nurses - some of them are so caring .

Bevvy profile image
Bevvy in reply toConfusedAsthmatic

No idea what your daughter does for a living but most people who are dying (despite media) are NOT vaccinated. And I believe media ARE over sensationalising things. Also as you tell us you have definitely not got Covid but doctors agree on pleurisy diagnosis. Some people have reacted to covid vaccinations but not in way you describe your symptoms.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

Can't take zinc on my antibiotics but the rest I'm on anyway . Thank you .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply topeege

I really don't have Covid and never have . My daughter is a dental nurse . Before she goes to work every day , she does a lateral flow test . First thing she did with me last week was a lateral flow test after my razorblade throat . The GP did a more accurate test . I do not have Covid , the crackling and popping is from my left lung , at the bottom line , exactly the same place that it was 6 months ago . It wasn't treated with any urgency or thought in my local hospital . I felt I was just a nuisance . The ambulance drivers were more pro-active than the nursing staff . I never even saw a doctor whilst I was in there . And now it's back , worse than ever and I need a plan to get rid of it . Apart from kind people on here advising me , not one doctor has really bothered to explain this to me properly . I need the facts .

Patk1 profile image
Patk1

Ru taking painkillers eg paracetamol or codeine? They will help.heatpack/ hot water bottles r soothing too.Ru using yr inhaler often enough?

U sound very anxious, which will impede yr breathing.read up on mindfulness and calming techniques to help u relax.anxiety+tense muscles create more pain+ breathing probs

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toPatk1

I think I've earned the right to a bit of anxiety here - pain , debilitation and being largely ignored by the people who should have helped me have made me sad and hopeless rather than anxious . I only discovered this page yesterday and I am grateful for any assistance . Mainly , I want the NHS to do the dot-joining and treat me before it's too late .

Patk1 profile image
Patk1 in reply toConfusedAsthmatic

Join the queue!

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toPatk1

It's certainly hit me like a bullet ! But my daughter has just pointed something out that I hadn't even noticed - never had any lung issues until I had the Covid vaccine . She's normally a GP nurse currently in a dental practice as she's also a dental nurse - and she's resigning because she's lost more vaccinated patients to Covid than unvaccinated and within days of them being jabbed . One died in the surgery . She warned me not to have the vaccine , said it wasn't a good idea . My husband was first in the queue as he is asthmatic and 69!

Patk1 profile image
Patk1 in reply toConfusedAsthmatic

Probably bcos it takes a minimum of 2wks for the vaccine to have effect and we get told this

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toPatk1

Doesn't explain people dying within hours of having it though and I had mine at around the same time I got pleurisy , I've never had Covid , I even had the antibody test so I know I've not had it so what's the point of your post ? It seems unclear ? People can't even go to the dentist without a lateral flow test for a check up and a full Covid test for fillings etc where aspirated water will be used .🤷‍♀️

Patk1 profile image
Patk1 in reply toConfusedAsthmatic

Point is to explain- not protected for 2 wks post covid19 vaccination!

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toPatk1

But I've never had Covid or it's antibodies ( which would have shown if I'd contracted Covid during that 2 week window ) and I've explained how dental surgeries work . Am still not understanding your point ? Is this about me or about how dental practices function ?

Although I am not a doctor, I have been around the block with a lung condition for 68 yrs. It seems pretty obvious to me that your pleurisy was never cleared up properly and it is highly likely that you are walking around with pneumonia also. The treatment that you were given was pathetic and was not sufficient to clear it up. When you get taken into hospital they just want to fix you up and get you out of there. Your GP is either lazy, out of their depth or both. It is rare to have a cough with pneumonia. This is why it can fool people. The pain is the give away. You need to get this sorted out properly now for the sake of your career. I played the flute for many years with the lung condition bronchiectasis and for you to be so badly affected by whatever it is that you do have is very serious.It is time to see a seriously good respiratory consultant and stop letting your GP faff about. Look on the internet for someone good close to you. Phone their secretary and explain that you have been ill since June, nobody has done proper tests on you or given you effective treatment and ask if the consultant will see you. Then take the name to your GP and INSIST on a referral. I am not usually keen on recommending private respiratory consultants because of the expertise in the NHS but in your case, if you can afford it, go to the best consultant whom you can see privately as quickly as possible. They should then do blood tests and a ct scan and will be able to interpret them properly. I’m afraid that we have to be pro active in our own interests and vociferous in sourcing the right treatment.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply to

Thank you for your reply but I've not had pain all summer so that kind of rules out the pneumonia theory . OK - I've not felt wonderful all summer , even slight exertion would exhaust me but I wasn't having any pain . Plus I did have another stomach ulcer back in June ; I was so ignored in hospital , after 4 days , I self discharged as I wasn't even getting my regular meds and was refused the right to basic hygiene like a shower . Yes , I had shivers and a temperature and was vomiting blood but " they" decided after an endoscopy was done six weeks later , I'd had another ulcer . I argued if that was the case , surely I'd be dead as I was untreated . The shivering thing was new for me - in the heat of June I was unable to keep warm in the middle of the night . I had to get my husband to ring up for more blankets as my buzzer went ignored for three hours . Could that have been pneumonia and should a doctor have been called out to see that ? The more I read , the more confused I get . The bouts of coughing and the pain began briefly at the beginning of June and ended fairly quickly and the pain only came back 4 days ago . If I had pneumonia , where had the pain gone and why was I not dropping weight and feeling very ill ? Could I have " silent" pneumonia ?

in reply toConfusedAsthmatic

You are going around in circles about your symptoms whilst not getting proper medical help for your lung problem. Whatever it is you need to bite the bullet and have it investigated.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply to

I'm going to ask to be referred to Leeds who've just removed a huge lipoma , the size of a fist out of my back - I couldn't turn over in bed with it . I can't afford private treatment and I still need help because the NHS want to give me this injection into my c6/7 vertebrae to stop the pain they've caused cocking up the operation last September which is when all the issues began after a poorly administered anaesthetic which leaked into surrounding tissues and left me with pain and an arm that no longer is strong enough to hold my flute up in my right hand . This may be going around in circles but it's all I have - a circle of cock ups and errors . In order to unravel the issue , I need to know what went so wrong so it can be fixed . As no one in this God forsaken trust ( YT) can be bothered to join the dots , I'll have to do it for them . Do I begin at the end , like a snake devouring its own tail , with my pleurisy ?

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply to

My symptoms are circular .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toConfusedAsthmatic

How frustrating is it ? Someone said I was anxious . I think it's frustration AND anxiety and not knowing whether to go in all guns blazing or try and stay nice - nice hasn't got me anywhere really .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toConfusedAsthmatic

Can you explain a bit about the circularity as I am new to lung problems and never even had a cough before June 2021 . The cough has just returned . The pleurisy is still sitting at the bottom of the left lung . I felt slightly better yesterday but then I tried to get down the stairs . The noisiest part is on the outbreath not the inbreath . This noise seems to stop me from blowing a decent peak flow result ? 300 when I can do double that because my lungs are strong - or were .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply to

I don't get a choice of GP's - I rarely see one but I am seeing my shoulder specialist in the morning which is why I need a plan of attack - excuse underlining and see my more comprehensive reply below .

in reply toConfusedAsthmatic

You need a consultant and proper tests. As you don't seem serious about getting your lung problem sorted out I think that we gave ended our conversation.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply to

I am deeply serious about getting my lung problems sorted and I'm sorry if I've offended you but with co-morbidities like this shoulder , I don't know where to start . If I did , I wouldn't be here asking other people for genuine help . Each day is agony and I can't play my flute - there's never been a day in 47 years where I've not been able to do that and my heart is breaking and still the NHS do nothing . We are in an area with a rapidly failing hospital under a trust that is also fairly useless . Can I ask to leave this trust and go to Leeds where I know their programmes and treatments are world class ? I've even got the name of the head honcho there and am willing to pay for an appointment . Not cheap but I'll sell a flute to pay for it . How is that not being interested - I'm desperate ! And GP's rarely see patients here anymore - we are too toxic .

knitter profile image
knitter in reply toConfusedAsthmatic

I am back again … did you mention that you are taking the blue reliever inhaler but not the brown one which can help dampen down inflammation ? The NHS advice is if you have to take the blue one more than three times a week you need the brown preventer .

I have problems with salbutamol , I only try to use it in an emergency . Too many puffs of the blue and my chest gets tighter, which is the reverse of what it’s supposed to do . I can’t use a combination one either . The brown Qvar works for me . But we are all different .

I had chest pain with both pneumonia and pleurisy , heat and painkillers helped .

I was advised to keep a chart of peak flow …a graph I made ….and a note of medication .

I can understand your pain on breathing deeply , I used to hold my chest wall where the pain was to cough.

I can understand your concerns about your employment which adds to your stress . I know it’s difficult to do , but easy for me to say , try to relax shoulders , chest and diaphragm ……breathe as gently gently as you can …nose breaths only . Gentle gentle.

I also find prednisolone on a high dose changes my mood …..my family know when to retreat . Difficult to sleep too.

I would try the BLF helpline tomorrow 03000 030 555 .

Sending best wishes.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toknitter

I'm not taking any inhalers anymore as I don't have asthma so it's pointless , I got no relief from either and the brown one made me lose my voice for hours at a time - I do get relief from the nebuliser . The paramedics have suggested that I use saline in it instead of bronchodilators .

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toknitter

Thank you for your kind , thoughtful and compassionate response - I'm doing my proper woodwind breathing again - feels like razor blades but maybe I can push past it ? My husband has given up the blue one too after many years and says he hasn't noticed .

Bevvy profile image
Bevvy in reply toConfusedAsthmatic

In answer to your question you can be seen at ANY hospital trust (pre Covid this was the case) and you can ask to be seen by any consultant/department BUT be prepared that you might not be seen by a particular consultant on the day but a member of their team. The only way to guarantee a consultant is to go private. You will still need a referral from gp but at least you can see who you want. I have done this in the past and because I have no insurance after initial consultation consultant put me on NHS list. Although no guarantee they will do this.However just because someone says a particular doctor is good doesn’t mean they will have answers for you . Lots of people here swear by the Royal Brompton but I had a terrible experience there and they totally misdiagnosed a friends son.

I hope you get answers you are looking for but I know from my personal experience that sometimes that is incredibly difficult and the best that can be done is to treat the symptoms.

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toBevvy

Thank you - I've decided to sell a flute to at least have my first consult done privately in Leeds . Although I found Littlepom rather unnecessarily rude and very rather presumptuous , it focused my mind . I have three flutes . One is 30 years old , was built for me in the US and is worth more than I ever knew - so I can sell it to pay for a few private consults . No point in having a wonderful flute I can't play if I have a second and third that are not as great , but then, neither will I be if I don't be proactive in this matter . I don't have a lot of money , I realised this was an asset I could sell in order to get better if possible ?

Bevvy profile image
Bevvy in reply toConfusedAsthmatic

Thanks hear what you are saying and 100% know where you are coming from. I just worry (again from personal experience) that it can be extremely difficult getting answers or definite diagnosis at times. BUT more important is if they can treat the symptoms and make you better!!

Bevvy profile image
Bevvy in reply toConfusedAsthmatic

Was thinking about you just now. Strongly suggest you find out how much an initial consultation would cost before you sell your flute. It may not be as expensive as you think. I can’t remember how much mine were and is a long time ago but can’t remember cost being SO much for an initial consultation.

Patk1 profile image
Patk1

So this is just yr 2nd chest infection this year?

ConfusedAsthmatic profile image
ConfusedAsthmatic in reply toPatk1

When you've never had a chest infection in your life asking me if this is " just" my second chest infection this year is like asking me how many times I've broken my leg this year . Sorry , this is the only chest infection I've ever had in my life but I've had other life threatening conditions and co-morbidities , I could ask you how many bouts of sepsis you've had in the last 12 months - I had 4 in 2019 because I have kidney agenisis . ( born with only one kidney and it's gone polycystic ) . I got pleurisy in June and I still have it in December . My husband has only ever had one asthma infection and he's had it for 67 years .

slram profile image
slram

I was told than an old fashioned remedy (even for the first signs of a cold) are boiling orange and lemon peels and inhaling the steam. Sometimes the old fashioned ways are safer and better!

poppyshola profile image
poppyshola

Hi ConfusedAsthmatic, after reading through your thread and answers to questions.. I feel inclined to add that I also believed pleurisy came before pneumonia. Also feel I should share my experience with inhalers that I struggled with the pump spray inhalers, they gave a horrible tickly cough and made my throat sore, so I'm on the diskhalers Ventolin and Seretide and I feel if you suffered these for long enough they could possibly be the instigator of your sore throat. I really wish you could be referred to Papworth Hospital in Cambridge as they are so kind, gentle and caring, they value your opinion and try to resolve your problems as far as they can and will ask your GP to test for things they can't deal,with as they are not chest related... they are the best...I would suggest in your case to request copies of your medical records from the hospital you last attended... I done mine and you will your medical history I was approx 60 when I asked for mine and it was huge because it went back to my age of 9. it cost me £50 and its worth every penny ..

Also don't take offence but I'm wondering if maybe there could be a bacteria lurking in one or all your flutes that may be recurring and causung your throat irritation, the pleurisy and pneumonia... I don't even know how you would disinfect a flute ... but I'm thinking ... I harbour both Pseudomonas and Aspergillus which are apparently soil and water related ... I don't do gardening but I do have a bath that the enamel is coming off ... so I've no idea where it comes from but I can on think it might be the bath or my hubby doing the garden... I do hope you find some answers somewhere ..

poppyshola profile image
poppyshola

Sorry me again I forgot to mention lemon and a spoonful of honey in hot water is good for a sore throat, plus gargling with salt too .. And good old Butercup Syrup is very relieving for chest or legs either neat or also watered down a bit with hot water... you can get this from some supermarkets, chemists or definitely from AM**ON.

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