Breathless, annoyed and getting nowhere! Any advice appreciated ? COPD

Hi guys, hope you are all well

I need some advice as I am getting the serious run around! Better explain.

I have been having problems with breathlessness for over 6 months. I have had 5 different courses of antibiotics and 4 courses of steroids, an inhaler changed as I have had asthma since a child. All of this hasn't improved the breathlessness. I have had 2 X-rays 2 months apart which both came back abnormal due to possible chest infection - hence the meds. The Rheumatologist thought it could be the Methotrexate so told me to stop taking it (even though I hadn't been taking it for over 4 months due to all the treatment and she knew this) until told otherwise. Was sent for a Pulmonary Function Test - and the technician said that my breathing was obstructive. The Rheumy said it's not the Methotrexate, restart and that it is asthma related ???? What kind of answer is that? Asthma related in what way? To what degree? What did the test say? - no answer!

Went back to GP yesterday as still having really bad breathlessness, it is making everything and anything impossible and is seriously making me more exhausted than usual (didn't think that was possible). Told GP that this has to be more than just my asthma - I have had asthma since I was 4 - I am 36 and only been hospitalised twice due to asthma - it has never been this bad or for this long! GP agreed, but because Rheumy hasn't shared info from PFT have to undergo another breathing test called reversed spirometry. GP thinks it is possible that I have COPD as nothing is improving my breathing. If it is COPD I know that as an heavy ex-smoker it is possible (quit 18 months ago after smoking for 18 years), I was breathless then but no where as bad and decided to quit because of my health and my family.

Spoke to Rheumy Nurse today who agreed that it must be something more than asthma as it has been going on too long. And then was told there is nothing they can do and it is not their problem!

I am getting seriously fed up. It seems I am going around in circles, not getting any answers and more importantly I can't cope with this breathlessness - it's making me feel really ill. Is it really so hard for them to communicate and try to give me any clue as to what it is? Fed up of being sent for test after test, with little or no answers, I am NOT a guinea pig lol.

I have just had enough! I can't keep going on like this. The breathlessness is affecting every part of my life and I just want some help to understand what is causing it.

If anyone has been in the same situation or knows about COPD any advice would be great fully appreciated.

Sorry for the rant guys x

Lupie hugs and well wishes to all

Esky ;)

Xxx

16 Replies

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  • You are not getting the run around. Just to clarify, you are being treated and treated quite well with appointments with the Rheumatologist and the Rheum Nurse.

    The Rheum Nurse is right, if it is Asthma / COPD then it isn't a rheumatology problem.

    The rub is if you get 15 doctors in one room you'll get 10 different diagnoses and treatment pathways and a blomin big bun fight in the middle with the remaining 5 doctors.

    The other aspect is your GP. Your doctor cannot see the Rheumatologists notes. He might not have typed them yet, the secretary might not have sent them yet, the surgery staff might not have scanned them onto your records or put them in your notes, or the doctor is too lazy to go and look, claiming the hospital has not sent them.

    The next step is for the doctor to write to the specialist, ask for the notes, treat you for COPD and see what happens.

    It is, a lot of the time, a list to exclude from before they get to the diagnosis. Short term it does appear as if you're being sent from pillar to post but it is remarkably difficult in diagnosing some things. At times the diagnosis offered is the only one standing after trying everything else.

    COPD is a life changing condition. Many things you do now, as you're finding out, can only be done with some changes, if you can do them at all.

    I am a nurse so understand that COPD can be quite tough to deal with at first. I tell patients to look at the British Lung Foundations pages on COPD, they are very good. blf.org.uk/Page/chronic-obs...

  • Thank you for your response. I will take a look at the website you have suggested. I understand what you have explained and thank you for your advice especially as you are a nurse and have a good knowledge regarding medical concerns. I am just anxious and fed up of being breathless - basically sick of being sick if that makes sense.

    One thing I would like to say is that my GP has been looking after all my care except they asked the consultant to arrange the PFT - i havent seen the Rheumy nurse for years. I am supposed to have follow up every 3 months according to my consultant - which I dont quibble but it is more like 10 months. Everything that has been done for my care has been by the GP. I am grateful for anything Rheumatology or the GP say and do. But Rheumatology has not been treating me well,the GP's are doing what they can. I too used to work for the NHS and pass no judgements on anyone - i appreciate and respect all the work the professionals undertake considering the present climate. But every district is different and is under pressure in different departments - Rheumatology is ours. I avoid contacting them at all costs as i know how thinly stretched they are. I am forever being told off by the GP as I am the type of person that will desperately try not to go to the doctors as i dont want to be a burden and they have enough people to see. I was ill for 4 years before going with the lupus symptoms - it took for me to collapse before I gave in and admitted defeat.

    Thank you for your advice i do appreciate your help. I will look into the website

    Thank u

    Lupie hugs

    Esky ☺😉☺xxx

  • I would ask for a CT scan to find out the damage to your lungs, then get to see a chest specialist and then you may get to see a chest physio who will see you either 3 times a week( or once a week on a one to one basis) they will go through some gentle exercises to help with lung function. I have had this exercise regime and continue it at home and I can walk further etc before getting breathless. I don't have COPD but do have pulmonary fibrosis from the Lupus. Hope you get some constructive help and start to feel slightly more in control. :)

  • Thank you for your reply. I think that I might ask to be referred to a respiratory specialist as this has been ongoing for sometime. It is that there is no relief from the breathlessness that is concerning and troubling me so much.Thank you for your advice and help it means a lot.

    Lupine hugs

    Esky xxx

  • It seems to be the best thing as that is their speciality. I have my appointment with my chest consultant and he has my rheumatologist in attendance. They call it a piggy backed appointment. It means that if any adjustment or addition to meds or anything can be sorted out there and then and not getting lost in between secretaries. Lets hope you get somewhere and get the help you need. :)

  • by any chance you got cough , and bring flem up ever so often. then settles down like its gone and comes back again like its never left at all.

    just asking because I've been like that for about 2 years now , but like yourselves had the chest x-rays , CT scan, ( from Asbestos Industry ) but totally opposite to you none smoker , not got Asthma but everything comes back clear reading as normal as they get.

    they just put all mine down to the Fribromyligia now. Its like its a new word to the consultants in Hull.

  • Hi Bartlett

    I do cough but it's mainly morning or if i can't catch my breath. There hasn't been any relief from meds tried, that is what is concerning me. I think I am worried as well as because of the no change from infection signs X-rays. I am hopeful and keeping fingers crossed. I hope you have better luck with your chest problems. Keep me informed if you get any answers Hun.

    Thank you for replying

    Lupine hugs

    Esky xxx

  • Can you ask for a referral to the chest clinic, lupus patients usually end up dealing with several different specialities, best wishes.

  • I was diagnosed with asthma although I knew I didn't have it, every time I went to the check up asthma clinic and they asked the standard questions every time they were flummoxed as I didn't give the correct answers, no etc.

    I too had all the lung function tests with no obvious answers. After being diagnosed with lupus & sjogrens I went to see a respiratory consultant who did an MRI scan. I would get pain in my left side as well as not being able to run upstairs without catching my breath or walk any great distance. My diagnosis has now changed from asthmatic to fibrosis of the lung.

    Everyone is right, in that it isn't the rheumatologist consultant to deal with this but if he is looking after you with lupus,it is his job to look at your overall health, and refer you to specific consultants who then give him the reports, so that he can see what the bigger picture of what your entire health is. Lupus doesn't discrimate which part of the body it attacks!

    Unfortunately all nhs departments are stretched to their limits and beyond, which is why we have to wait so long. It is not the fault of the staff who do an outstanding job within their means.

    Hope you get some answers soon. X

  • Thank you chris. I agree with you totally in every aspect. I avoid contacting the Rheumy or GP at all costs - I have to be desperate - I am forever getting told off for putting it off lol. But I know how stretched they are. I respect and admire them for everything they do.

    The breathlessness is just making me anxious - I feel like a fish out of water that is gasping - to be honest it scares me coz I don't know what it is, but know I can't carry on like this. Any way enough doom and gloom lol"

    Thank you for your advice and help.

    Lupie hugs Hun

    Esky xxx

  • Which hospital are you being looked after, esky? I agree with Chris (or cannot agree more). I used to think once I am under Lupus dep, I would be all sorted out, NOT THE CASE. It's like climbing a mountain to get to see a L specialist, only to find there wasn't the type of care I thought / assumed existed. WRONG. I was living in a fantasyland. Sorry for caps..I think I understand where you are coming from - it sucks, let's be honest with that..serious multi-system condition and setup isn't that great. It isn't Rheumatology issue? Well, it's an excuse. Breathing issue in lupus is one of the commonest symptoms!! Maybe, lupus is fairly common and there isn't enough money to go around to provide the detailed care for all the patients living with this condition? Why couldn't they just say, "well, sorry, yes, that could well be from Lupus but we wouldn't be able to deal with that in this department, please see your GP." That would have been far more honest. Honesty is important when dealing with this type of illness, hospitals need to give you more respect and understanding. But perhaps, that's too much to ask?

  • Hi ashfordG. Thank you for your reply. I live in sunny old Bradford west yorks lol. I think the specialities struggle to communicate. They really don't like referring you to other specialities, but because they are so over stretched one referral can take months. I get the it's not the lupus it is the lupus a lot - it is so much like watching a series of House lol. I am going to grit my teeth and try cope as much as I can, but it is scaring me as I don't know what is causing it, but who actually does because I have lupus? Hmmm it is a quandary lol.

    Thank you for your advice and help

    Lupie hugs Hun

    Esky xxx

  • Rant on my friend. Thats what we're here for! I have just been througj something similar but the other way round! I was told i had asthma in my thirties and have been a heavy smoker - gave up almost 3 years ago. I was referred to a thorassic consultant who gave me loads of tests which all came back 'very good'! I couldnt believe it. I didnt know whether to laugh or cry. Breathing test very good. Chest xrays clear. Meanwhile i have been experiencing breathlessness. Feeling very congested. The noise that I make just breathing is absolutely horrendous. The consultant then announced that he didnt think i'd ever had asthma.. He thought the problems were in my throat and i've just had a barium swallow xray.

    I have wonderful very conscientious consultants - consultant endocrinologist, neurologist, thorassic consultant- and a GP who seems now to feel that there's nothing he can do once he has referred me but the consultants just seem to focus on their particular organ of thr body and dont treat the body or symptoms as a whole and,yes, i do think that information gets lost and fails to be passed on to the right people.

    Thw whole process leaves you feeling desperate, frustrated, furious ...and still sick.

    Hang in there. Thats all I can say. We are "idiopathic"! Does that ring any bells with you?!

  • Hi Peggy's

    Thank you for your reply. Idiopathic does ring a bell lol - but because of my youngest child - everything related to her health comes back idiopthatic -she is under numerous consultants for hearing, sight and paed Rheumy. Thank you for understanding and your advice. I would be okay if I could catch my breath- fell like a fish out of water lol.

    Thanks Hun

    Lupie hugs

    Esky xxx

  • It could be you have Pulmonary Fibrosis. Before I was diagnosed in 2006 in the Nineties I was told by a chest physician that I have Asthma but it was not and it was only in 2007 that a Rheumatologist said it was damage of my lungs caused by the Lupus and then I suffer some years of not been able to breathe properly until I was admitted to hospital after having chest pain the day after I had an infusion of Cyclophosphamide. I was eventually put on the chest ward.

    I asked the doctor there if I would be a likely candidate for a lung transplant and she said yes (i'm not going to do it). I also asked if I could have ambulatory oxygen and it was then arranged for me to see a pulmonary physician who then sent me for the test to see how much oxygen I would need per litre and how often.

    I still use to cough a lot and would bring up frothy white stuff. If I get very breathless I would could so much that I scare everyone.

    Hope this help.

  • Hi MP

    I had never heard of Pulmonary Fibrosis before. My thoughts are with you Hun- I am really breathless, but can only imagine how much of a struggle it is for you. I am going to see what they say with the r.spirometry and go from there. Thank you for your advice and help it means a lot.

    Lupie hugs Hun

    Esky xxx

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