You've got to laugh.....: I've had breathing... - LUPUS UK

LUPUS UK

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You've got to laugh.....

friars126 profile image
7 Replies

I've had breathing difficulties since my teens. Some of you may know from a previous post. It only happens in the spring & summer, my chest gets tight and for at least half of the day, I can't get a whole breath and constantly feel slightly out of breath. Nothing seems to make it worse or better but it's extremely irritating and tiring. Not to mention troubling for the people around me who constantly think I'm sighing at them! It was diagnosed as asthma but no medications worked. Chest xrays clear. Halter monitor fine.

Anyway, I went for lung function tests which were all fine and saw the consultant on Monday. After examining me and answering a few questions , he said he wanted to do one final test to rule out asthma and a CT to check for anything 'structural' (Like I'm a creaking bridge) but that anyone who scores over 23, and I scored 28, is likely to have 'Dysfunctional Breathing'. Oooooh, what's that you say? Basically, it's your own fault and it's mostly in your head and probably anxiety or stress related! 😂 Oh please!

Do you know what? I wouldn't mind so much if I wasn't a trained psychotherapeutic counsellor who treated people for stress and anxiety. I wouldn't mind so much if it wasn't seasonal which would make it more likely. I wouldn't mind so much if it didn't impact my life so much. I wouldn't mind so much if it didn't stop me getting to sleep and it didn't hurt all the way into my back sometimes.

Why is it, and I know you will all have had experiences like this when drs don't know what something is, they decide its stress or anxiety. Just tell me you don't know! I can handle that much better than basically being told I'm causing these issues myself!

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friars126 profile image
friars126
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7 Replies
PMRpro profile image
PMRpro

With you all the way!

And being a basically nasty person - I do hope that these prats who decide it is "all in our mind"/"depression" will develop something autoimmune at some point. Because I have come across GPs who tried to force patients off the only medication that worked for their problem and who now have the illness themselves. And do now actually realise that what they tried to force on said patients DIDN'T WORK!!!!!

In Germany, spring/summer breathing problems would be assumed to be a pollen allergy until proven otherwise. They also realised years ago that using very small amounts of the allergen can be used to desensitise people. The UK thinks it has made a massive discovery in seeing that that can be used to stop peanut allergy due to never giving kids peanuts out of fear...

What medication are you On? Try something stronger, if it goes away, it's your lovely Lupus saying, hello! Breathing issues...a typical seasonal flare lol 😎☀️

Gillyg profile image
Gillyg

Totally with you on this. I have had this implied a few times. At the beginning after a couple of years of being in so much pain and infections and no diagnosis I was told it was all in my head. I felt dreadful only my mom believed me and she died before a diagnosis was made. That was over 25 years ago. Then only 2 years ago after my children rushed me into A&E couldn't even stand up felt so ill the doctor said I needed to go home and think about what was making me ill. I had a very bad urine infection which I was prone to. Last week I was asked how do you occupy your day. I know exactly what he meant. Sometimes it isn't obvious what is wrong but I have similar symptoms to you and I pass all the breathing tests. I have had to accept its the way I am when I am unwell. A bit of understanding wouldn't go amiss. Hope we have helped to pick you up a bit. I am 60 this year and was diagnosed at 34 some 6 years after the symptoms started. I have heard it all. take care. X

chrisj profile image
chrisj

I was diagnosed with asthma a few years ago after many nights thinking I was going to die, chest so tight I couldnt take a proper breath, and felt I was going out of my mind...very frightening. My son insisted they were panic attacks, I was going out for walks at 2 and 3 in the morning trying to cope with it...Even rang NHS out of hours looking for help...

Then one morning getting out of bed my breathing became out of control, as fast as I took a breath my chest was pushing out heaving like mad and again I thought this is it...going to die, I had no control over it. Once it calmed down I rang for a taxi to my gp..never been known as I always walked there. The gp diagnosed asthma straight away and gave me a script for a ventolin inhaler. The chemist..thankfully..was just above the surgery so I was able to get it immediately. Then a slow walk back home...

I've been for breathing tests, discovered there are different types of asthma and get annual checks ups unless I have problems and then I can make an app if needed. Just had the spray I use every day upgraded to a stronger dose, had a review last week. I now use a Flutiform spray twice a day and have the blue ventolin as needed..no more "panic attacks" in the night

Never underestimate the power of the mind....mind and body go hand in hand, one affects the other. Sorry I cant be more help and hope you find a solution. Could it be hay fever??? thats another one linked to immune system problems x

LUPUSadmin profile image
LUPUSadmin

Hi Friars126,

It's worth mentioning that if you're unhappy with your doctor's opinion, you are entitled to a second one on the NHS. Perhaps you could ask your GP to refer you to different consultant?

Natura profile image
Natura

I hear you! I have had terrible breathing problems the past couple of years. I basically think its inflammation in the lung. Had test done years ago said i had slight asthma probably due to all the cars on the island. Never gave me anything for it. Recently went to dr trying to explain and he did a breathing test alone and with inhaler. No difference with inhaler, so he dropped it.

I have heard anxiety and such as well. I do have anxiety, but really believe it is something else. I have a wheeze when i laugh. Duh! Obviously something physical and not psychological . I think the medical professionals are ridiculous! I dont listen to them. They are only good for emergency treatment and surgery. They dont know or understand anything else in my opinion. Maybe you can find one that does once and awhile. Maybe!

JenStarkey profile image
JenStarkey

Hi there, I often experience exactly the same thing and it comes and goes. It's excabberbated during early spring and I've deduced that I have an allergy to tree pollen.

I've also been to chest clinic and consultant for lung function, x rays and other tests but all been normal. An inhaler gives temporary relief.

I've put it down to global weakness and my lungs just not being quite strong enough to sometimes work as well as they can be. My other half bought me an aerosure, which is like a breathing 'workout' apparatus to increase your lung muscle strength. Admittedly I've not been using it properly so can't truly examine benefits. But there is a direct correlation to when I'm globally weak and flaring and my lung problems.

Take care, hope this info helps xxx

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