Hi everybody! This is my first post. I really need help. I am Marion from Maidenhead, 52 years old and all on my own with the feeling of suffocating more and more. I am suffering so much that I am furious that I am not allowed to get a life-ending injection!
Since 3 years I am short of breath and getting worse. My sinuses are blocked on and off. My throat is permanently sore and it feels that my chest (lungs? bronchies?) tightens up more and more. My chest feels also congested (more on the left side) with mucus (puss even?) although I had no sputum for years.
My lung CT-scan, X-ray, blood, blowing tests were all clear. All my readings (blood pressure, pulse, oxygen saturation, lung flows) are normal. Medications (different asthma inhalers, mucolythics, Omeprazole, antihistamines, Clarythromecin, Prednisolone) don't help (anymore).
When I use the nasal spray Fluticasone from the ENT-doc, then my lungs seem to tighten up even more. When I rinse my sinuses with Saline, then the phlegm clogs up my chest even more, although a postnasal drip was not diagnosed.
I also have constantly 37° fever, feel always very ill and very weak like "poisoned". It feels as I have been dragging a permanent infection of my WHOLE respiratory system for years, but getting worse now. It is NOT psychological, I had life-long trouble with respiratory infections, but they are not visible on X-rays anymore despite worsening of the symptoms.
My ENT-specialist looked ONLY at my sinuses and my lung specialist looked ONLY at my chest. Because of my permanently hightened temperature/the “poisoned-feeling" and the constant interaction of my sinuses with my chest I would need to find a specialist who understands and specialises in the connection/interaction/circulation of the WHOLE respiratory system (not just EITHER lungs OR ENT!) as well as PERMANENT (hidden?) INFECTIONS of the body (would that be a different specialist again?).
Is such a specialist (in England) existing at all? I would need as many details as possible please to beg my GP to refer me there. Thank you ever so much for tips and opinions!
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Marionmarion
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Hello and welcome .First of all you have my sympathies , I have some idea of how you are feeling and it’s dreadful I know . I felt permanently ill , but I was coughing up discoloured mucky mucus for years after double pneumonia ....took many , many courses of antibiotics both oral and IV to clear.
Secondly , have you had a blood test to see if you have any infection somewhere in your body . I too have sinus problems , that’s one reason why I am awake .....headache and face pain and discharge .it goes for awhile then comes back.
I wonder which inhalers you are taking , and how much. It took me ages to find one that suited ....I don’t get on with combined ones, but many here do very well on them , we are all different.
Do you have a peak flow meter....I was given one , asked to use it twice a day , record findings .....I did a graph to show changes .
Have you done reversibility test at your GP s .....before and after reliever inhaler . I know with Covid that is difficult now .
Have you had any allergy tests ?
Hormone changes ......I know my asthma fluctuated with my periods , and menopause ?
I was given anti anxiety medication for a while too.
I have three , now adult , asthmatic daughters , asthmatic grandmother and mother too.....one daughter had a permanent cough and eczema from being a small baby .she tries to avoid her triggers . Daughters are ok now.
Another thing that helped me was trying Buteyko Breathing exercises , but the classes are very expensive , tutors vary in quality . Gentle , nose breaths help me , as does meditation and relaxation ....you tube have some. But I went to classes in the beginning .
I can’t help you with the referral query , sorry, but I am sure others may be able to .
The BLF have a helpline open during office hours for UK residents on 03000 030 555.
I hope you get some relief soon , have you a nurse practitioner that you could talk to today about your situation , your feelings . Please ring a health professional when they open.
Hi knitter! Thank you for your kind reply. It feels like I need IV-antibiotics too, but without a diagnoses you get nothing. Yes, I had my blood taken. Seretide and Clenil Modulite don't help me. Salbutamol might have kept me from calling an ambulance so far, but doesn't give me the will to live back or enough breath to accomplish anything and it is getting worse. My peakflow is okay. Reversibility test was done too. Antihistamines don't help either. I don't believe it is the menopause as I had life-long trouble with my respiratory system and other women don't. (Breathing) exercises get me only more out of breath. Thank you for the helpline, I didn't even know it existed! 😘 🤗
Hello Marion, welcome to this very friendly, informative forum. I’m so sorry to read of your ever worsening symptoms but I’m glad there’s no life-ending injection available because I’m sure there is help for you.
The best specialists are really at the big teaching hospitals I would say i.e. the Royal Brompton Hospital in London. Worth mentioning to your GP perhaps.
I do agree, it’s not easy to get anyone to look at the whole picture but there is hope for you I’m sure. Please don’t give up.
I also hesitate to ask if anxiety is playing a part in your health problems? The more anxious you become, the more your breathing can be affected. Worth thinking about maybe.
Please let us know how you get on. Take care xxxxxx
Hi, Sassy! Thank you for your nice reply. I don't know which ones are teaching hospitals, but I shall ask for the Brompton! Of course there is massive secondary anxiety and certainly growing with the breathing difficulties, but I can exclude primary anxiety as I WOULD have a lot to live for otherwise.. never called an ambulance in my life.. would LOVE to forget about things and just get on.. but it won't let me.. 😔
Hi Marion,I really feel for you. You sound like you’re really struggling. I think many of us on here have felt that awful desperation at some point.
Do you have any other symptoms? I only ask because I was feeling pretty desperate and felt like I was drowning al day every day. So much fluid on my lungs and sometimes my inhalers or nebulisers would make it worse.
I had swollen ankles and feet and was investigated for heart failure. I was out on a diuretic...a water tablet which has relieved me of 80-90% of the fluid in my lungs also. Huge relief and no more drowning.
I just feel it would be worth a look at your situation from a different angle also. Once we have a condition, clinicians can sometimes be blinkered and assume it’s always that and occasionally that’s not the case. Might be worth you speaking with a trusted healthcare professional that you know to see if they think a different diagnosis for this particular episode, may be the cause....?
Thank you very much, Lynnet! Yes, I have that drowning feeling as well! That will be tough mucus. But since about a year I got a tightening feeling in the chest on top of it. I don't have a known problem with fluid, no swollen ankles. I wonder if fluid in the lungs would show on the X-ray and scan though as mine was clear?
I REALLY feel for you and totally understand where you are coming from because some of what you are describing fits with my experience.In my early 40’s I had undiagnosed breathing issues. Inhalers limited help. Travelled all over the country trying to get diagnosis. Live in London and even went to specialist in Preston! Was under Royal Brompton at one stage. Even tried private route. Either had specialist saying don’t know what problem is? Or diagnosed with something by one specialist only for next to disagree.
I was fortunate in having supportive Gp’s who 100% agreed that something serious was happening and they were as much of a loss as me/specialists.
Also wanted someone to consider symptoms as a whole but couldn’t get this option. As you say respiratory look at one thing ENT something else.....
My Go referred to it as atypical asthma and eventually it was decided I have asthma/COPD overlap....
But like I say diagnosis took many, many years. At one point for my own piece of mind I stopped going to specialists and just tried to get on with my life/come to terms with it.
My treatment/medications have been trial and error with lots of patience. Like you I have underlying / chronic symptoms but get flare ups with severe symptoms that have required intensive medical intervention.
Can you pin point anything to start? Mine started in 1999/2000 with an exceptionally bad case of pleurisy that took months and months to clear. I have always argued that damage occurred then and has continued with symptoms.
Sadly sometimes there is no diagnosis to be had and best can be done is to manage symptoms.
Hi Bevvy , not to hijack Marions post, but I went through a similar situation to you.....always been a bit breathless .....lived with coal fire , smokers and asthmatic relatives ....but it was the pleurisy/pneumonia which seemed to do the damage .Took years to sort out , inhaler trial and error......some made me much worse... now reliant on steroids and a feeling that I contracted Covid before testing available and breathless now.....but a different sort of breathlessness if that makes sense.
Yes. Glad to not feel alone. At one stage I even asked gp if issues could be “all in my head”. He actually fell about laughing and said not in the slightest. Pointed out he had seen me at absolute worse and no way could I consciously or unconsciously make the symptoms I had!I think part of my explanation to Marion is that for me, there was a particular event that triggered things. But also sometimes there isn’t an answer and just need to deal with symptoms as best you can. I NEEDED a name and that’s why at first called atypical asthma. In other words severe asthma symptoms but no definitive diagnosis. This helped prior to COPD diagnosis when people asked what was wrong with me. Far better than undiagnosed breathing issues.
Thank you, Bevvy, that is interesting to read! Are you saying your X-rays and CT-scans came out clear although you have asthma and COPD? That is scary! I was cleared of all red flag diseases, but who knows whether the scans and X-rays are read properly? I grew up in the east german coal mines, smoking filter cigarettes passive and then active (stopped 15 years ago), have a diesel train passing my house for the last 17 years now here, but my fellow sufferers of the past and present neighbours don't have my problems! After flu jabs (thatswhy I cannot even get Covid-vaccinated) and after flights (caught viruses in the air condition?) I had always EXTREME lung infections, couldn't breathe for 3 months at a time. Last time it started in 2018 one day after a touchdown again. That was the last time when a lung infection showed on the X-ray and when it could be cleared with medication. A month later I lost my sense of smell for 1 month and had a strong mouldy situation at home at the same time by chance, which I found and removed as soon as my sense of smell came back. The sputum showed clear of mould. But ever since I am having those strong permanent symptoms now and getting worse, but with clear readings/test results.. 😰
No I am not saying nothing showed on X-rays or CT scan and therefore you should be more concerned. Asthma is not diagnosed via X-rays. And unless very advanced COPD would not show on X-ray. Usually asthma and COPD are diagnosed via breathing tests. I struggled to complete breathing tests and/or were not conclusive. I had numerous tests over the years and as said previously was difficult to pin point where issues lay. It is good that red flag conditions are not showing but I do understand that doesn’t help find a definitive condition.
I was trying to reassure you that is possible to have symptoms without knowing exactly what is wrong. And that just because can’t currently diagnose must mean symptoms are due to anxiety or a mental health issue. It doesn't and I understand your pursuit of physical health support. So please take my response to you at face value. I wasn’t saying you should have additional concerns.In your case it may be best to find what medications work for you and concentrate on that. Having said that my mental health did suffer but that was due to not having a diagnosis. But wasn’t causing the issues.
Like I said I went all over country and also through private doctors who all struggled to give definite diagnosis. Ironically it was my gp surgery who eventually were able to get reasonable test results from me and hence make a diagnosis.
I am aware that I have been very fortunate in having excellent gp support. Indeed far better gp support than “specialist “ hospital consultations.
Have you definitely been told shouldn’t have Covid jab? Most people wouldn’t be affected by jab because no live medication within it.
It took 3 years of inhalers , antibiotics ,and steroids on and off before I was sent for a CT scan which showed bronchiectasis .Felt like I was carrying another person due to fluid in my nose and chest .Was sent to Wythenshaw hospital to the infectious diseases ward and had numerous allergy and blood tests.Results were I was colonized with numerous bugs and had 15 allergies .Don't leave it any longer .Insist to see a specialist , good luck sweetie there is light at the end of rainbow 🌈 xx
Thank you, Tinker! Very interesting! The lung specialist excluded bronchiectasies with me because I have no sputum. What kind of bugs did you have and how did you get rid of them? And for the allergies you take antihistamines?
Perhaps I am "colonized with bugs" as well as I feel so ill and "poisoned" next to my breathing difficulties.. What would I have to ask for? A blood test to check for bacteria or viruses in my body?
Hi and welcome. My experience is similar to above members which began 2009/10 with pleurisy then pneumonia followed by 4 more bouts of pneumonia in 18 months and countless infections & antibiotics. My consultant was St George's in SW London a university hospital. It took ages to get sorted causing more lung damage . I too have sinus issues, had an operation in 2007 to drain the totally blocked cavities which certainly helped to prevent the chronic 10 day headaches. Ever since I've used steroid nasal spray and acupressure points & I avoid allergy triggers. I really feel for you and can only suggest you follow knitter's advice to call the helpline for guidance on moving forward- they are very good. Call during uk office hours (closed on Bank Holiday Monday I expect so call today).
If you can't call copy and paste your post to email them, address found by looking in 'About' above. Good luck
Oh, just thought, does your supportive GP send sputum to be tested? There are a few stubborn bacteria that lungs can be colonised with, also a fungus (which should show in sputum and CT scan).
Hi Peege! Sorry about late reply. Thank you very much for all your advice! A sputum sample I had given. Unfortunately I cannot find the email address here.
The number is 03000 030555 or email: blf.org.uk Good luck. P
ps do contact them, they have respiratory nurses to give guidance on what to do next and also a counsellor who will help with you feelings that you can't take it anymore. X
Have you considered a consultation with a rheumatologist? Perhaps you could consider an autoimmune disease where your immune system attacks various organs in your body. I did the rounds of all the specialities before eventually being diagnosed with vasculitis. Please don’t give up hope there is a doctor out there somewhere who will recognise your symptoms. Having a sympathetic GP is a good start.
Hi, Mooka! Sorry for the late reply. That is highly interesting and I certainly will mention it to the GP as soon as I dare to venture out of the house again! I am suffering hell, but I am still too scared of infection at the moment. 😧
Hi Marion and welcome to the site, you will find us all very friendly and supportive he ere. I'm so sorry to hear about your symptoms, but there is always help and hope. I'm glad there is no end injection because I also know there is help out there for you. Please try to stay strong and positive, and let us know how you are getting on. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Hello, please don’t feel alone, there’s so many friends on here who can sympathise and reassure you.Maybe you need blood tests to find out what’s going on , like inflammation or infection.
There are specialists out there but private ones are very costly as i found out when i wasn’t happy with my GP, i paid for a private consultant ( respiratory), and i got relief.
You need to speak with your doctor and make sure they listen to all your concerns . You shouldn’t have to be suffering like you say you are.
The pandemic has interfered with our care in my opinion, and it’s not acceptable, but there is light at the end of this very long tunnel we’ve had to go through.
Please try not to despair. I wish you better health and hope you get the help you need very soon.
Sorry for the late answer, Collie4! Thank you for your kind words and advice, which I will definitely consider as soon as I dare to go to the GP again! 🤗
Hi and welcome Marionmarion. Sorry I have no advice from experience however I hope you eventually start to feel better. I believe anxiety can affect our health greatly. Take care x
Sorry I can’t offer much more than others have except I have always been told 37 c is normal body temperature. I hope and pray you can find a resolution to your issues.
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