Anybody have diaphragmatic weakness?

[DaveT81]

Hi all,

I've posted in this section previously about my - as of yet - undiagnosed and unexplainable breathing issues.

I've been convinced it's some sort of nerve issue, perhaps phrenic, or a diaphragm weakness. As I've mentioned in previous posts, my whole respiratory system feels tired, weak and sort of 'goes through the motions' so-to-speak.

I tried repeatedly to get a test done last year, called a 'sniff test' in the US, which is a sort of moving X-ray that shows how the diaphragm moves during inhale/exhale process but my NHS doctor refused to refer me, despite me simply wanting him to refer me to a private clinic.

However, it appears that few, if any, clinics in the UK offer this sort of scan/test.

I'm out on a limb at the moment, so I'm just asking: has anybody else had a weakness with their diaphragm diagnosed and, if so, what sort of tests/scans did you have?

[knitter]

Have you tried yoga to strengthen your diaphragm , or low and slow relaxed belly breathing.

Alternate nostril breathing can help calm as can meditation.

[DaveT81 in reply to knitter]

Hi knitter. Yes, I was doing yoga for about 6 weeks and it really appeared to be helping but I think I started to push myself too much and it was making matters worse. I stopped after that and have been struggling to find the energy (and ability to breath) to start up again.

I really should start again though.

Also, I have a deviated septum (both sides), so nostril breathing has become a real difficulty for me which is definitely exacerbating my problem.

[crashdoll]

Hi Dave, I have a neuromuscular condition (Myasthenia Gravis) and my diaphragm is weak. I’ve had various tests. The main one they use for me is forced vital capacity (spirometry) and mine drops considerably when lying down which is a sign of respiratory muscle weakness. Mine is low even when standing or sitting. I had a nasal inspiratory pressure test which was a very simple test. I was offered the option for a diaphragm EMG but it’d invasive, so I declined. I assume they’d want to look for an underlying cause in you? Hope this helps a bit. Feel free to ask any questions.

[DaveT81 in reply to crashdoll]

That's very similar to mine too, crash. I have a lot of trouble now lying down on my back. I try to sleep on either side but it can be just as bad when I do, but lying flat can often feel really vulnerable anyway, without breathing probs.

I have massive issues when sitting down too. It feels as if all of my organs are squashing up and putting pressure on my lungs and my ability to breathe properly gets much worse when I'm sitting. I'm constantly having to change position to make it more comfortable. Well, as comfortable as I can. Do you ever experience that?

Do you ever feel as if your exhales aren't complete? I can usually take a full inhale, but I can only sort of.. 'half' exhale. It's like there's a full stop half way through breathing out. Also, how do you cope with this? I just have some days where I feel like I can't live like this forever. I'm only 38..

[Albertdog]

Hi Dave- some years ago I was involved in a head on crash on the motorway - apart from numerous injuries i was crushed between the steering wheel (old fashioned spokes with horn in middle) and back of seat which was pushed forward.

I recovered relatively well - but gradually my breathing got worse together with pain from broken wrists and dislocated shoulder. The grisselly bit in front of my solar plexus is pushed to one side.

My local surgery say I have Asthma/COPD and prescribed inhalers - but don't seem concerned that I can't inhale properly - they don't see it necessary to do further tests as an X-ray I had done years ago didn't show anything "unusual".

If you find any answers I would be grateful...

[DaveT81 in reply to Albertdog]

Hi Albertdog, I certainly will let you know if I find anything out.

I've been tried on inhalers, steroid inhalers, straight steroids, nasal sprays, testosterone and was even told I was hypothyroid at one point and nothing worked. I got some.. slight improvement with B12 injections a year ago but I think that was simply making me feel better in general. Overall, nothing has worked.

I've had the same problem as you - most scans and tests have come back as either 'normal' or don't show anything concerning so, as far as they're all concerned, there's nothing to worry about.

Today, I'm wheezing, feel like I can't take in enough oxygen and can only stand up for a short while before feeling really tired. But yeah, I'm OK according to the experts.

[Fennella02]

Hi Dave. I was diagnosed with diaphragmatic weakness about 5 years ago. I did the inspiratory and expiratory strength tests in Birmingham - City Hospital on The nhs. I also did the sniff test every 6 months . At my local hospital, i did the Cough Peak Flow test. The reality is that my doctors aren’t interested in helping me and dont even list it in my Diagnoses. I just have to accept it and live with it.

[DaveT81 in reply to Fennella02]

Thanks Fennella02. What does the sniff test you had entail?

I had read about it and, as I mentioned previously, I'd tried to get it done privately but my old GP wouldn't refer me.

I've had normal spirometry done 3 times in the last year or so and each time I've struggled to exhale for more than 4 seconds but they've told me it's normal.

There's literally no way I could live with this, so you're a better person than me. I'm struggling to cope right now as it appears to be getting worse on an almost weekly basis right now.

[Fennella02 in reply to DaveT81]

I didn’t think that I would cope either but the body adapts. My tests involved pushing a bung up one nostril which was connected to a handheld digital monitor. I have all sorts of inspiratory and expiratory difficulties with air trapping, apnea, laryngospasm etc etc. I just work within my limits. My basic spirometry is not too bad but my FEF 25/75 is just 33% now.

[frazwag]

Hi i have acos which is copd with overlaping asthma sydrome . in my several years with this i have found that diet can be a big part of the condition. some of the things you eat to help in a healthy diet can result in excessive internal bloating which intern will push on your diaphragm into you lower lung causing out of breath or lower compression of the lung and if like in my case the top part of lungs are not working your will feel a real drop in overhaul lung function. for instance i find that onions or peppers or anything slightly spicy will bloat you even if you got no external signs of bloating. we all have different triggers and although we all have serious lung problems life style can play a major part in better living. although you of course have to take medical advise and medication check and double check your life style i am know intolerant to many things i never used to be since my illness began for instance i found out by my own testing egg will bring on an mild asthma attack causing my lower lung to become inflamed and as my top half is destroyed my lower lung has to do all the work. people should be aware its not always a complicated medical answer we may be looking for. incidentally i have allergy s and intolerance to many thing that do know efect my breathing on top of my copd including grass , dustmites. sugar and sweetners all of which have to be sorted it only takes one to tip the scales and finally what a lot of doctors never tell you stay away from ibuprofen and asprin they can deadly to people with breathing problems.

[DaveT81 in reply to frazwag]

It's interesting you mention about what we eat. I had to change my diet to gluten, dairy and wheat free about 2 years ago so I already avoid a lot of food that would upset or bloat the stomach.

However, I do still get bloated a lot. And when I do it makes my breathing worse. Quite a lot worse, actually. I seem to have developed a lot of allergies or slight intolerances to certain foods that I've never had before.

I don't think it's a cause of my breathing issues but you're right about what food can do to problems like this. It definitely doesn't help me.

[Hidden]

Hello, I had a sniff test, two weeks ago in Southampton General hospital. They wanted to check my diaphragm was working.