My mum has emphysema and 'either bronchiecstasis or fibrosis' (each hospital letter says something different!) Still no firm diagnosis - it's all about there being 'evidence of' or 'possibly either / or', so it's all very confusing!
When she is sitting, sleeping, showering, ironing etc, she is absolutely fine - a little breathless towards the end, but nothing major, however, as soon as she starts walking, she gets a severe discomfort / spasm at the top of her abdomen which makes her very breathless. It eases after about a minute, then she carries on for a further few steps, then has to stop again, She has inhalers etc which make no difference and is on 3lpm of oxygen for 15 hours per day which doesn't help either. She doesn't display any of the other classic symptoms of her diagnosis like excessive mucus (even after having her AM inhaler that helps you to cough it up), she doesn't cough, doesn't have disturbed sleep, isn't in any pain in her chest or back etc etc ....
I did book an appointment for my mum yesterday with our GP and she did do an abdominal examination and there was an area just under my mum's ribcage towards the left that was very tender to be touched, so she has been referred to the hospital to have the camera inserted to have a look if there's anything going on in addition to her diagnosis.
I'm convinced that although I don't dispute for one minute, she has what she's been diagnosed with in a 'mild' way, which is what the notes say, however, I do think the tummy discomfort / tenderness is actually due to something else causing the breathlessness. I've read about 'hiatus hernia's', diaphragm spasms etc etc and they can all be a cause of breathlessness, but due to there not being enough research on them being connected, they are rarely associated with each other.
My brother and sister in law are both in the medical profession (brother is a paramedic and sister in law is a Macmillan nurse) and when I mentioned my doubts to them, they both laughed and said 'what the hell has a hernia got to do with breathlessness?", then a couple of hours later, my sister in law messaged me (they live in Australia) and said she had just been looking through her university library and has found several studies by groups of doctors relating to respiratory problems and indeed, hiatus hernias, diaphragm issues etc can be a cause for breathing problems.
Do any of you suffer with a discomfort in your upper abdomen upon exertion or just your upper chest? Has it been found to be just another symptom of your diagnosis or something else?
I know i'm maybe clutching at straws, but I will do anything I possibly can to try and research further these awful respiratory diseases.
Love to all
Julie x
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JForbes26
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First off, just for a bit of information, I have Bronchiectasis and it may or may may not help you, but Bronchiectasis is also known as non-cystic fibrosis. So when those different letters say Bronchiectasis or fibrosis, they may be talking about the same thing.
Second, I do get pains in my upper stomach/abdomen, and in my chest but not always on exertion. They can happen sometimes even when I'm resting. The cause has never been determined. Doctors think I may have just pulled a muscle with all the coughing I do.
Anyway, hope your mum gets the help she needs soon.
Thanks for that Symes. Now I understand why it's referred to as different things if it means the same if that makes sense
My mum doesn't cough at all and only gets the pain on exertion. She says it feels like her whole stomach is moving upwards and she just wants to push it down. After stopping fir a one minute rest, her tummy 'moves' down omits own which means she can carry on. It's all very bizarre ...... She is also waiting for a referral to the Royal Brompton which I'm hoping will give her the answers we need.
On one of her letters, it says she has been 'discharged' by the respiratory nurse ..... Erm, she hasn't! And she has an appointment with them next week! This is why I don't always have faith in some Dr's!
The Bromptom is the best place but please don't expect a clear and positive answer or diagnosis. Lungs and breathing are very diverse and complicated & very different in each person Follow their advice and treatment, let them guide you in how to deal with illness. Yes you get lots of odd pains but all part of the problem keep up the exercise with the 02 & drink lots of water.
I sometimes get soreness around the diaphragm arc when I try to do an activity requiring a lot of oxygen and movement of lungs and ribs, but haven't taken my reliever inhaler. It's as if my diaphragm is pulling hard on my lungs but my lungs just aren't able to give. An osteopath said my diaphragm and intercostal muscles sometimes go into spasm, and showed me a technique to relieve this. It's usually worse for me on the left side.
I also had severely sore ribs on Monday when I woke with a bad head and budgie cage dry mouth and struggled to breathe all day despite taking my reliever inhaler. It was gone by next day. I did once discuss the possibility of sleep apnoea with my GP but he dismissed it because it only happens a couple of times a month.
Could you tell me what techniques the doctor showed you for diaphragm spasms. I am sure I get them on both sides lower down my ribs when I twist in a funny way. I have mentioned it to my doctor but she didn't seem to have any idea. When she felt there she said she couldn't find anything
It's probably best to be shown how to do it by an osteopath or similar.
Basically, lying flat as you can reasonably manage, you cup your hands and push gently and slowly but firmly using your fingers bunched together in a line, up under your lowest ribs. If your diaphragm is spasming it will feel sore but should not hurt a lot - DO NOT CONTINUE IF VERY PAINFUL. Breathe in and out gently with your fingers still in place and you should find they move a little further under your ribs, and the soreness should ease.
You can do both sides at the same time (left hand under left ribs, right hand under right ribs), and can choose to start from either the stomach end of the diaphragm or the side of your body end. Slowly work along the bottom of the ribcage, doing the same movement. It takes me about four presses to do the full length of each side.
Then gently rub the sore intercostal muscles where your ribs are sore, using your fingertips and a slow circular motion. This may feel very sore at first but again should ease.
Hope this helps, but really, it would be better to be shown how to do it.
I shall mention it to my doctor next time I see her. Is there any particular reason that people get them as far as you know? Just wondering if I can avoid them though I do realise I tend to get them when I twist awkwardly
I get sore ribs and spasming diaphragm when the amount of effort I'm trying to do needs deeper heavier breathing than my lungs can manage. It's as if the diaphragm is pulling at the lungs but the lungs just can't move far enough. Using my reliever inhaler before I start performance singing or physical activity, has cut down on these episodes but not stopped them completely.
I have a paralysed right side diaphragm and I get very breathless when I bend over to even stop breathing. I cannot swim as it affects the breathing by the action of breaststroke. Lifting my arms up and keeping them there affects my breathing. I have had many different explanations on my breathlessness but it does seem that they are now all starting to come to the same conclusion. For now at least?
I dont think your clutching at straws they may be right but they may be wrong .......It may be something totally unconnected with her lung issue and the problem is when you have a condition like this they put everything down to it
I can only speak for myself but i do not get discomfort like you describe and your right to be checking other things out and perhaps get a second opinion
So weird that you write. I was diagnosed with hiatus hernia in 2004. I was diagnosed with mild emphazema in May of this year. With the exact same issues as your mother- but also had been told I now have a fatty liver-pre diabetes-on top of the already fibro and thyroid cancer from years past. So it is hard for them to see anything other than these two diseases when talking with me. Extremely frustrating. But my doctor said I can not possibly be as breathless from my mild emphazema and sent me for several other evaluations. One was a sleep study ( told I have sleep apnea), one a heart specialist ( which I can not visit until I pay $365 which I do not have yet), Ear nose and throat doctor because along with my breathlessness I am having chin and jaw pain and already had an ultra sound there to rule out artery blockages ( I was told I have several herniated disc and several Tarlov cyst in my cervical spine from MRI. I do not have TMJ and now having to see a neorosurgon. In the meantime I started Chantix to quit smoking and bought a low impact workout item "Simply Fit" . As long as I can keep my balance this should work. I feel it immediately. Plus doctor said muscle uses less ice gem than fat and I have about 50lbs to loose. Keep me posted please and I will you.
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