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What does lung involvement feel like?

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I know this is difficult to answer, but I would really love to have some input on what lung involvement and shortness of breath ‘feels like’.


Two weeks ago my Rheumatologist confirmed that I am ACA positive for Anticentromere B. I originally saw her for mild but symmetrical joint pain and sore shoulders, so she suspects Sine Scleroderma and referred me for an ECHO and pulmonary function tests (PFT). I had the ECHO yesterday and was told that if I hadn’t heard anything by now, no news is good news. Yay!


But since I got the call two weeks ago, vague symptoms seem to have become a really big deal. I have an intermittent dry cough, but nothing major and not before a few weeks ago when I had a touch of a cold. I’ve woken up coughing, but it feels much more like a reflux cough that I’ve had for years. I don’t get winded with exertion, yet I do have a sensation that I need to yawn and take big breaths, mostly when I’m thinking about it (which seems to be all the time!) When I wake up at night, I feel like I need to make myself breathe, like a panic attack, and then can never get back to sleep. And I have a pain in the middle of my chest that seems to come and go.


My PFT is not for two weeks, so I am going out of my mind with anxiety, to the point where I’m nightly considering going to the ER. Any thoughts, information and/or assurances is much appreciated. Oh, and I am so grateful to have found this site, I’ve scoured it and have learned so much!

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Hi Cmfc,


Welcome to these forums!


As it happens, I have had lung involvement due to scleroderma for the last nine years and am certainly not ready to shuffle off this mortal coil yet! :wink: The symptoms I presented were (among others) a dry, unproductive cough and a shortage of breath. A shortage of breath felt like.......a shortage of breath, particularly if I exerted myself.:wink::lol:


I've included a link to our Symptoms Checklist, but I would point out that a scleroderma diagnosis is far more complicated than merely reciting a list of symptoms. We do recommend that our members consult a listed scleroderma expert, as this complex disease requires specialist knowledge and expertise, in order that the correct treatment can be given. As you're awaiting PFT's then there is not much more you can do until you've had them and have the results in front of you; thereafter a future course of action could then be decided.


However, far more concerning is the amount of anxiety you're experiencing. One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. Please note I have no medical training (apart from an out of date first aid certificate and a fondness for telling my medical team how to do their job) but I would suggest that some of the breathing symptoms with which you're suffering, particularly at night, could be due to anxiety and stress.  Anxiety is a symptom that needs to be addressed and minimised when one is dealing with a chronic illness such as scleroderma and as it's perfectly normal to experience depression and anxiety along with illness, it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with.


Kind regards,


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Hi, I've had that feeling of wanting to yawn since I was 9 years old (I'm now 60 and it hasn't killed me yet). A feeling like I'm breathing, yet it's not having any effect.  I've been told over the years that it's anxiety or my imagination, even though I have not been anxious at all.  In fact the only time I have ever been anxious or depressed is during an 18 month period when I was unnecessarily put on anti anxiety medication.


My recent lung function tests and echoes have been fine, so it seems like my Scleroderma is limited.  I do however have aches in my back, hips, shoulders and legs.  I surmise that most of this results from stiffening of the ligaments since my muscles appear fine.  I do get a lot of cramping though that is very painful and extremely distressing.


When first diagnosed, a lot of my problems did stem from a fear of progression together with the side effects of medication, which seemed to make all of the aches and pains even worse.


Since losing a few kilos and increasing my levels of exercise and physical fitness, things have improved quite a lot. Actually exercising the areas where pain is felt is quite helpful and even some physio may be of benefit.


My reflux cough has benefited from taking a proton pump inhibitor, together with avoiding spicy food.  I find that smoking and drinking alcohol don't help me much here though.


Rather than getting anxious, as I did, I found it better to fight this disease.  I know it will get me in the end, but I have strived to become as physically active as I can and enjoy life as much as possible for as long as I can.


A strong will and a positive mental attitude can and will help considerably. Instead of worrying, try and channel that energy into fighting and making the most of what you have.


I wish you the very best in however you chose to deal with it.





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7 hours ago, dimarzio said:

A strong will and a positive mental attitude can and will help considerably. Instead of worrying, try and channel that energy into fighting and making the most of what you have


I must agree totally with the sentiments expressed by Dimarzio.


Of course it is a worrying time when suffering unusual and rather scary symptoms, but as he has wisely suggested, it is far more productive to try and deal with things as they arise, rather than worrying about what "might or might not" happen.


Kind regards,

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Hi Cmfc,


Welcome to Sclero Forums. 


Please keep in mind that I'm not a doctor and have no medical training at all, and that I'm also going into detail for others who may stumble upon this thread with similar issues.


Perhaps I should explain that, to the best of my understanding, the shortness of breath that goes along with things like pulmonary fibrosis and pulmonary hypertension typically onset very slowly and so gradually that it is sometimes even hard to recognize.  With both, the most common exacerbation would be with exertion; and usually it's just the usual/normal/expected onset of the typical shortness of breath that any healthy person would get with too much exertion -- but it onsets earlier than before, without de-conditioning being the root cause. 


Whereas, shortness of breath occurring at rest, but not with exertion, would likely have a different cause. You may have residual congestion from your cold, the onset of flu or pneumonia, or good ol' fashioned anxiety over the very stressful worry about illness and diagnosis.  It's entirely normal to be hyper-vigilant, upset and depressed for a few weeks following any major life change (such as this).  Seeking information and support, like you are doing, typically gets us back to our usual level of sanity within a few weeks.  But probably the majority of us (even me) sought out private counseling and/or medication to learn how to best cope with such drastic changes, and get our equilibrium back. 


Whenever something drastic happens, it's good to set an internal timer if we feel our reaction is going downhill. Usual symptoms would be not sleeping well, feeling exhausted, emotional quivering, feeling cranky or irritable, being tearful, turning to alcohol or drugs for comfort, feeling sorry for ourselves, and eating too little or too much. Or, just having one dominating thought that is difficult or nigh impossible to turn off.  It's okay to allow ourselves some space to adjust on our own, let's say, up to two weeks.  If we're not seeing significant improvement by then, it's wise to seek extra help and support to avoid developing a chronic mental health condition (such as major depression or chronic anxiety.) 


Since you're at the two week mark, and you're noticing something (either physical or mental or even both together), then it may be a good idea to see your primary care doctor.  It's almost weird to *not* have an emotional reaction to such sudden and scary prospects as a potential chronic illness, so don't waste a minute feeling bad about it. I view times of big change, like this, as prime opportunities to improve my ability to cope with stress, since the usual happy daily life doesn't require much effort from us to maintain our stability. 


Plus, who knows -- you might have an additional reason (cold, flu, pneumonia) for your shortness of breath, and it could even be several items together (congestion from the cold, stress of the diagnosis stuff, and very early stages of fibrosis).  But any way you mark it, this would not at all be *only* the onset of, say, pulmonary fibrosis, and in that regard, you would be in no immediate danger at all. 


I've had some lung fibrosis for over 20 years now; it was beyond the inflammation stage when it was caught, so I didn't even need treatment for it. And I had chronic shortness of breath on pretty minimal exertion since then, which could have been even just simple de-conditioning, but it turned out to be due to dermatomyositis (a very rare autoimmune disease that weakens muscles) -- and it suddenly resolved upon successful treatment for the myositis. 


Scleroderma is a chronic illness, sometimes with acute exacerbations, and the reason it's chronic is because it typically simply fails to kill us right away.  It's more normal to live with the illness for years and decades -- rather than days or weeks, which is how many of us imagine our prognosis to be, in the beginning.





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