I am hoping for some advice. I have had reoccurring chest infections since last year. Since May of this year I have had 5 courses of antibiotics and 4 courses of steroids. 6 weeks ago I had an abnormal chest xray - pneumonia showing on right bottom side of lung. I am due a follow up chest xray on Monday 😦.
The problem i am having is doesnt matter how they change my inhalers or what "other" treatments they are throwing at me I cant shift the breathlessness - its driving me bonkers and knackered more than usual. Sick of hearing that I have basal crepitations one minute and oh it sounds clear the next. IF ITS SO CLEAR WHY CANT I BREATHE. They said it was clear 2 days before the abnormal xray ahem my faith in drs 😕😕😕
My dr said today that my chest sounds very quiet but tight and shallow - and that she could tell I am struggling to take a breath. I am not a fan of hospitals - scared witless and I try to avoid as much as possible 😣😣. I also have to have numerous breathing tests to check if its lupie related - according to Con. Dr thinks its asthma related or hayfever (never had hayfever in my life😬)
I am just really fed up. I would love to just be able to breathe. Hate feeling like all the air is being squeezed / crushed out of me 😢. Cant even breathe when im just sat down doing nothing, its getting beyond a joke 😢.
Has anyone else had any of this experience? I am beginning to get concerned and dont know what to think.
Any help advice would be appreciated.
Lupie hugs to u all hope u are all in good spirits
Esky xx
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esky
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Am vvv much feeling for you. This is vvvv tough stuff. Am sure you'll get some v helpful replies. A year of this seems to me vvvvv significant...have your medics tested your immunoglobulins? Because this sort of persisted complex infection can reflect low IgG, IgA & IgM...have your medics considered referral to immunology? Also, have you had the pneumovax?
I'm new to investigations by immunology due to my low Igs...I was referred by rheumatology when my low Igs were spotted last feb while I was in a long run of recurring complex infections..immunology explained to me that low Igs can be especially indicators of respiratory tract infections.
I have never wrote on here before but it sounds so similar to me. I had exactly the same, antibiotics 6 times, steroids and I eventually ended up having a plural effusion. This was were my lung filled with fluid and I had to have it drained. It was missed on the x Ray at the walk in centre and only spotted at the out patient clinic that diagnosed the pneumonia.
What you describe sounds just like me when I have a flare, not being able to breathe, but I am in agony with mine too!
I had similar experience before I knew I had lupus, I was so ill for 4 months not able to breathe properly, in so much pain etc, and I kept going to gp in desperation. They kept telling me my chest was clear and I had a virus! Then one day they decided to do a blood test which checks for blood clot on lung, this came back very high and they called me at 8am and said get straight to hospital. It didn't take the hospital long to discover that my lung was full of fluid and it wasn't a blood clot. And I had been examined by GP the night before and made to feel stupid like I was moaning about nothing!
Please don't be afraid of going into hospital, they get on with things in there and soon find out what the problem is, no waiting for appointments etc.
anyway, when I have these symptoms I usually have pericarditis and serositis (inflammation of the lining of the heart and lungs and fluid round the heart). My doctor usually does a heart scan to check for this, I'm not sure it's easy to tell otherwise. Maybe it is worth asking about this?
I really feel for you, it's awful when you are suffering and nobody does anything!
Where do you live? I have a brilliant dOctor who never seems to cut any corners at Airedale hospital xxx
I have SLE and also, COPD. I use Spiriva - it's not a steroid. It's a capsule that you crush and inhale. It works for me about 75%. Living in Florida 365 days a year, with all the pollen around and extreme heat makes breathing difficult. Have you been tested for COPD? That covers all of the lung issues. With all of my other issues that come with the SLE, I don't take steroids. The COPD came from second hand smoke plus me smoking when I was younger. And dumber!
I had these same symptoms a few years ago and I asked for another appointment to see the Rheumy, I saw his senior doctor who though I had a blood clot in my lungs so she admitted me into hospital that afternoon while they did some blood test. The next day when the Rheumatologist came on the ward and examine me he immediately said it was Pulmonary Fibrosis.
However I did struggle for a few years with not been able to breathe properly after that diagnosis and had early retirement on ill health grounds.
I still continue to suffer with this problem from 2007 until June 2013. I was admitted to hospital in December 2012 with a chest infection and was sent to the Heart and Lung unit, whilst I was there I asked the doctor that looked after me if I could have ambulatory oxygen and when I was discharged I was sent an appointment for the Pulmonary consultant who then arranged for me to be tested for the oxygen which I was given in May 2013.
The breathlessness has not gone away but the oxygen helps and I now see the two consultant at a combined clinic.
So esky please let your rheumy know how your breathlessness affects you.
Thank you all for your replies. My Consultant is sending me for some specialised breathing tests - to check its not lupie related. She is concerned as its an ingoing issue. I am taking my steroids 5 day course and inhalers, salbutamol and Seretide - steroid inhaler. I am struggling and have decided that if there is no improvement with the steroids i will have my xray Monday and attend hospital. If it worsens i will go straight up to A&E. Had enough now of this it is making me feel worse than I normally do - which I didnt think was possible lol. Thank u all for your advice and help it means alot. Thank u xxx
I am afraid i would get a second opinion. Have you had ur heart checked out? you could try a cranial osteopath. Where i live they are very popular for helping to restore the flow through your body. I really hope you get it sorted. Love and prayers!!
Thank you sally. I go for my follow up chest xray tomorrow. So will hopefully get a response from this. If it comes back abnormal again i am going to ask for more in depth investigations. Thanks again x
As far as I know the xray was clear. Attended A&E last night as breathlessness was terrible. The took bloods and checked for possible blood clot - all clear. Was tachycardic for a few hours so kept me under obs for a couple of hours. Discharged without any answers as to why so breathless. They said oxygen sats 100%. They think the breathlessness is due to inflammation caused by the lupus. They advised for me to speak to Rheumy and go for breathing test on 16th Sept. Fed up as no one is the wiser. Thought they might nebulise me to elevate the breathlessness - but NO. Confused as to why i am so breathless. Doing my head in. Made me feel worse that the A&E doc tried to make me feel guilty for attending A&E, but was ever so helpful to the drunk patients ????? 😬 and there were a few lol. Just fed up and confused hun. If i get any answers i will let u know. I am trying to keep my chin up. Thank you for checking on me means alot hun xxx esky xxx
I just wanted to let u know what the latest is. Attended A&E Monday night, which was a waste of time, energy and effort lol. Found out today that the X-ray I had on Monday that A&E said was "normal" came back again with same ABNORMAL result. Advised by Rheumy nurse Metoject to be stopped immediately. GP is writing to Consultant today as does not know what course to take as she thinks it is Lupus related - inflammation. Breathing no better. Have to wait until Wednesday for Consultant to be informed as the poor woman never seems to get a holiday. Any deterioration to get in touch with Rheumatology straight away.
Hopefully will get answers. Breathing tests booked and GP wants referral to Respiratory Specialist. So hopeful. Fingers crossed. Feel lousy but might be getting somewhere :).
Thank you to everyone for your concern, help, support and posts.
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