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? For Those With Any Type Of Lung Involvelment


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#1 Elehos

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Posted 17 May 2007 - 04:39 AM

Hi all,

This year has been a pain in the patooty! Last year on April 3rd I dropped like a sack of potatoes with high fever, and killer body pain, etc., and was bed ridden for months afterwards. First diagnosis was lupus (now celebrating 25 years in business), the second one was sclero, on top of everything else. To celebrate my one year anniversary of being incapacitated, I got sick(er) again this April 3rd with the same, although this year the doctor also gave a diagnosis of pneumonia. Antibiotics didn't clear it up, and it's certainly not leaving on its own.

Since last April I've had great difficulty with pain in the upper back, around the shoulder blades and upper rib cage, often extending around to the side of the rib cage and into the armpits when I inhale, but just thought it was the OA worsening until now. My lungs didn't hurt before, but now they're starting to burn, mainly from the coughing, and no one is sending me for more testing to see what's up. A rheumatologist! A rheumatologist! My kingdom for a rheumatologist!

Here's the question. For those that have any type of lung involvement, how did it start for you? Not that we necessarily have the same things going on, just curious about symptoms and diagnosis's. Thanks, and take care!

Elehos

#2 Sweet

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Posted 17 May 2007 - 05:24 AM

Hi Elehos,

I don't have lung involvement at this time, so I can't give you an personal insight, but I was compelled to tell you how sorry I am that you have so much going on. Just wanted you to know I'm rooting for you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 peanut

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Posted 17 May 2007 - 06:55 AM

Elehos,
I'd try to find a good pulmonologist to check out those lungs of yours.

Here’s my story: my lungs were one of my first symptoms. I remember playing soccer and my lungs burning; the doctors said I had asthma. Years later, I developed a cough with white stuff that lasted 1.5-2 years. Eventually I ended up in the ER twice unable to breathe or sleep due to coughing. They said I had coughed myself into exhaustion. They prescribed narcotic cough syrup – powerful stuff!

Doctors continued to say asthma, but my allergist/asthma specialist said asthma was part of it but not my main problem, so he referred me to a lung doctor who diagnosed me. Now days prednisone and other meds keep my cough under control. My lungs don't burn or hurt although I do get sharp pains like the muscle is pinched. I just breathe slow and work it out.

Lung muscles get tired and need a break from coughing. Yours sound like they need a vacation.

I hope my experience helped.
Take care,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Elehos

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Posted 17 May 2007 - 07:28 AM

Hi Sweet,

Thanks, I'll take all the rooting!

Hi Peanut,

Here goes the humor again--I can see a headline that reads "NY woman dies while lungs are vacationing in Tahiti." I know what you mean though. It seems that far too many specialists left the upstate NY area about 10 years ago, but I'll certainly look into a pulmonologist, even if a rheumatologist won't make himself/herself open to another patient.

Best wishes,
Elehos

#5 janey

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Posted 17 May 2007 - 07:35 AM

Elehos,
I've had a dry chronic cough going on five years now. It has gotten worse with the development of mild PH/ILD. The main symptom that indicated a lung problem for me was the increase in being short of breath (SOB) with exertion. At first it was SOB on my walks, then going out into the yard, then with just daily chores. At the pulmonary doctor's, my O2 sat dropped from the high 90s into the 80s after a few feet of walking.

Hope this helps. Sorry you are having so many problems Darlin'. Hope you find some causes and solutions soon.

Big Hugs,
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#6 peanut

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Posted 17 May 2007 - 07:48 AM

Elehos.
My lungs are in Tahiti? Oh thank goodness someone found them--tell them to come back! he he..

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 barefut

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Posted 17 May 2007 - 07:50 AM

Hi Elehos,

My first symptom (and I thought it was just because I was fat and out of shape) came when I was coaching my son's soccer team when I was scrimmaging with the boys.

My endurance was so low I became hot and flushed very quickly and easily, with very little running and it took me 2x longer to cool down and return to normal heart rate and temp.

At other times I also experienced shortness of breath - not a panting, but a feeling that I can't satisfy a breath no matter how deep I breathed. And I would get the yawns.

I hope you get to the bottom of your lung issues soon. Yes you do need a rheumatologist! Can your general practitioner refer you to a good pulmonary doctor?

Take Care !
Barefut

#8 Clementine

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Posted 17 May 2007 - 08:15 AM

My story is this....I actually WAS on vacation when I got sick...ha ha. I thought I picked up something in Mexico, then I became short of breath and went to ER. This happened over a week's period. I could have had mild ILD before that because I remember always having a hard time hiking, but it's hard to say if it was ILD or from just living in the mountains at high altitude where it is hard for many healthy people to breathe. I also had pnuemonia at the time I was diagnosed.

Until my medication kicked in, I had severe chest pain and felt like someone was stepping on it. I had bouts of dry coughing and was short of breath from just about everything.

Hope this helps.
Jennifer

#9 susie54

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Posted 17 May 2007 - 10:56 AM

Hi Elehos,

My first symptom was a feeling on no air, like I just didn't have enough. I would take deep breaths to compensate. It's a weak feeling of air coming in and out.
Then as it progressed, when I would have a flare up < I became short of breath with exercise, dry cough with a little phglem white usually.
This past flare up was the worst with alot of shortness of breath, feeling of not enough air, dizziness, swollen ankles after exercising but all that has gotten better as the flare got better.
I had an echocardiogram that show borderline PH, reduced DLCO but only mildy dropped. All PFT's were good other than that. Doctor said I had a little air trapped and this causes that breathing problem. I would recommend a pulmonologist.
Susie54

#10 Elehos

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Posted 17 May 2007 - 12:13 PM

Hi again!

Thanks for all the replies! Oh, Jennifer, you must have accidentally come home with peanut's lungs (hee, hee). I've gone through all the weirdie things, like getting winded from lying in bed, but at least they come and go. Although I do have asthma too, this is different, and I'll be calling my general practitioner again in the AM to see which way to go. Thanks again, and hope that all of you get some relief for your health problems too!

Hugs to all,
Elehos

#11 barefut

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Posted 17 May 2007 - 03:47 PM

Just a funny lung story....

My mother -in-law has always been a heavy smoker, smoking up to 2 packs of buttless cigarettes a day most of her life. She's tried a number of times to quit and actually did for many months a couple of times.

Well she told me of a dream she had after she had fallen off the wagon once.

She said she dreampt that she took her lungs out, hand washed them, hung them up to dry and put them back in all squeaky clean! :lol:

Wouldn't that be nice......

Off the subject a little farther.......
Another funny dream my freind told me about: She had always wanted long hair but had trouble growing it out.

She dreampt that she was washing her long luxurious hair in the shower but she discovered her hair was PERFORATED and the shower spray was causing her hair to snap off at the perforation and it all went sliding down the drain.

That's not a dream, that's a nightmare. ;)

#12 jefa

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Posted 17 May 2007 - 08:26 PM

Hi, guys. I have been following these lung involvement threads with considerable interest. It is probably my greatest worry, though like Sweet, I don't have any symptoms which would signal lung involvement at this time. I do get short of breath when I walk up stairs, but I am overweight. I have had a dry cough for a couple of years at least, but it seems to improve when I have my reflux under control.
Warm wishes,
Jefa

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#13 CraigR

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Posted 21 May 2007 - 11:20 AM

My first tip off came when I decided to get in better shape by swimming. I already walked a few miles a day at work. I noticed after a few months of swimming vigorously 5 days a week, that people older and in much worse shape would swim on by, while I needed to stop occasionally to catch my breath. My general practitioner did lung capacity testing, which turned out to be quite good (too good - which I later learned is an early sign of pulmonary fibrosis), so he told me that I was "out of shape" (?!!). Also noticed, when hiking, that I needed to rest when going up hill.

Never a problem with a cough.

Specialist (pulmonologist) diagnosed mild fibrosis / pulmonary hypertension, which has become worse, especially after a bout with lymphoma.

Craig

#14 Elehos

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Posted 21 May 2007 - 02:36 PM

Hi Craig,

I didn't get a cough until this year after a bout with pneumonia, but at least it's not the dry cough which sounds more serious. Lymphoma? I've only known one other person that had it, and it takes a toll on the body! I'm hoping that you're in complete remission now and will remain that way--you certainly don't need more to deal with!

Best wishes to you,
Elehos