"Lung Pain" (?)

I was diagnosed with MCTD 4 years ago (SSc, SLE, myositis, Sjogrens, RA, Hashimoto's, etc). So far it has affected my GI tract and skin, but I attribute the skin portion to my SLE more than anything else since it's not as severe a problem as some of you experience...mainly sun sensitivity, butterfly rash, and skin breakage here and there upon waking up (pressure sores depending on how I slept). In any case, to those of you who have been diagnosed with lung involvement, I was wondering what symptoms prompted you and/or your doctor to run the necessary tests to confirm it...last night I had an overwhelming feeling of "lung pain" (it was different than back pain as this felt as though it were coming from the inside and I had trouble breathing). And this morning I woke up, stretched, took my meds as usual (including some for pain) and while the lung pain is better, it's definitely still there - no deep breaths for me anytime soon :(

How do you differentiate from muscle/back strain, and was this symptom I describe sound familiar? I of course don't want to face the potential fact that my disease is progressing but I am worried - yet I don't want to make a big deal about it...thanks so much for any insight you could provide.

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I have a really good Rhemy and so when I first went to him he had lung xrays at first appt. He had me come back to his office and told me I have scars on my lungs and I needed to go to a pulmonary doc. So, I went and they did a cat scan and pulmonary function test and said that they found pulmonary fibrosis and interstitual lung disease. I think it was every 6 mos. they would have me retake all that again to keep a check on it. Now I am down to one year. The pulmy gave me 3 types of inhalers. He finally diagnosed me with emphysemia and COPD due to the scleroderma. I never smoked in my life. Also, he said that methotrexate can make it worse for your lungs. Don't know if you take that but be cautious if they prescribe that. Recently though I had the same pain you described. Mainly on my left side---it feels like it hurts on the outside of my shoulder blade and then the center of my chest is sore, but feels like it comes from inside and hurts when I breathe. It takes several weeks to get in to see the pulmy so I decided to wait and just see if it goes away and it is lightening some. But if you are worried you should see your doctor. With these diseases you can get pericarditis when causes chest pain. It is inflammation on the sack around your heart and my daughter has bouts with that---and it is very painful. So, you better just get checked out!!! Hope things work out for you and you get some answers.

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Thanks so much for taking the time to reply! And...great insight by the way :).

I suffer from chronic costocondritis so I am somewhat used to the rib/chest pain, but what I have been experiencing since last night seems dirrefent...as in, it is my back that hurts but it's not muscle pain. Rather, it feels like a chronic ache that gets worse if I take deep breaths. Last night I felt as though I had been hit and had the wind knocked out of me...and it burned too.

I have had pulmonary function tests, they were "border line" normal and my x-rays showed no problems ~ but then again this was about two years ago. I have a fast acting inhaler, Advair and Spiriva...funny that the doctor would have given me all that if he wasn't concerned about my lungs lol. I recntly moved so I haven't seen a new rheumy to refer me to a pulmonologist, but the one I did see while hospitalized a couple of years ago told me I should "expect" for lung involvement to occur. I guess I continue to be on denial as to where this illness can take me or how it progresses :(

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I have lung involvement, but have never suffered from pain. Mine shows up while excersising. I get short of breath.
You really need to find a dr. in your new town, and act aggressivly. (Worst speller ever).
Good Luck!

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Hi, I have had asthma for many years since I was a teenager. I was first diagnosed with Hashimoto's, Raynaud's, Sjogrens, Fibromyalgia, Lupus (misdiagnosis for the SLE). I have hypoglycemia, and had polysystic ovaries and endometriosis. I have sprained my ligaments in my ankles many times and broken my left toes many times. I was just diagnosed with relapsing polychondritis, which is the destruction of cartilage which explains my medical history.
I started having chest pain in my 30's . I am 49. One cardiologist suggested that I not wear an under wire bra because I was thin and it was hitting my ribcage. (huh?) I had costocondritis at that time and also mitral valve prolapse and SVT. He did not mention the above, just the bra issue. Well, I scratched that doctor off my list of doctors to see.

I found out that I needed to have a trachea and bronchial stent put in as my trachea and bronchial tubes were floppy. This does happen in very very rare cases. I have a great surgeon that takes good care of me.

I know that you will listen to your heart and get the care that you need.

Take care
Stacey :)

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In the routine testing my Rhemy was doing since my first visit, to see what if any organ involvement there was, she ordered a High Resolution Cat Scan of my chest The results showed lung scarring in the lower lobes of both lungs. My Rhemy told me this is the only test that will show the being of scarring. Chest x-rays and MRI results will usually come back normal because they can't pick up the scarring. The HR Cat Scan film photogentically (?) slices the lung tissue so thin it can readily pick up the scarring more accurately and clearly.

I suspected I had lung involvement because of a continual dry cough and sometimes causing me to be short of breath.

I would certainly make an appointment with my Rhemy and talk about it. The earlier you find the things Scleroderma is causing, the better chance of slowing it down. To me the unknown is scarier than the known. The known I can deal with and start to fight.

Sending an angel hug and wishing you well.

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I had that with a plural effusion that was like that. There was a fluid build up between my diaphragm and right side lung. It has not bothered me lately.

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Dear Hopefultoo, My husband also has lung issues, and has been dx with pulmonary fibrosis, COP, and emphasyma. None of them have created any "pain" for him. However, he did have a Pneumothorax, which is a change in pressure between the lung and the lining of the lungs. In his case it was a pretty serious collapse. However, it did heal naturally, and quickly and he had no issues with it, or pain once that happened. Even the slightest change in that pressure can be painful, so hopefully, that is all you have and it heals quickly.

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Thank you everyone for taking the time to reply! Your feedback have given me great ideas for questions to my doctor and your good wishes have lifted my spirits :)

I still have a dull ache so I scheduled an appt. for this Friday and hopefully we will figure it all out.

Offidle - I'm so glad your husband is ok...his symptoms regarding the pneumothorax sound awfully close to home so maybe that's what happened...or I could've had a major panic attack and I just felt as though I was out of breath (when that happens I feel pain either on my back but mostly my chest/heart).

Regardless, I will have everything checked out to be sure. Everyone's insight is much appreciated!!!

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There is not supposed to be any lung pain until the disease has progressed significantly. However I felt pain when taking a deep breath. My primary didn't tke it seriously until I kept insisting. I knew it wasn't right. Finally he sent me to a pulmonologist who did a CT. scan which showed ground glass. The pulmo Olivier can't explain why I had pain as I caught it in the extremely early stages. But the fact that I did has allowed me to begin treatment while it is still early enough to stop progression. You know your body. Insist on a scan. That is the ONLY diagnostic tool other than lung biopsy, which I later had as well

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i have had quite a bit of lung complications for the last few years- multiple nodules, one being ground glass- now being called granulomas, collapsed lung, pneumonias, etc. . I would not describe it as "lung pain" but more like it is hard to take a deep breath. As long as I don't take a deep breath it isn't too bad. When I have a flare- it gets to the point where I feel tired from breathing- if that makes any sense. However- something you said struck me as similar to a problem I had. I know we don't need any additional problems, but I had a spontaneous rib fracture, and pain prevented me from taking a deep breath. Just wondered if you have increase in pain when you lay flat or did you have any fits of coughing prior to the pain starting? If your bones are puny it is a possibility. Just a thought. I am glad your seeing the doc soon.

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