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morning star
10-10-2007, 12:00 PM
I have a ? I have SLE and have chronic shortness of breath and chest pain that comes and goes it is not sharp but suttle. This has been going on since 3/07 and has been getting slightly worse. I've been using an inhaler Advair which has steroid in it. It helps somewhat but at times I'm still try to gasp for air just when sitting here at my desk. I've seen a cardiologist who said my echo came out normal and also said my lungs sounded clear but could tell I was having a hard time breathing. I've looked several things up and what I find the closest dx of is Pulmonary effusion. Does this sound possible. :?: I've been referred back to my pulmonologist who initially diagnosed me with asthma but my cardio. said it did not sound like asthma, in fact my Rheumie even said my lungs sounded clear but could tell I was trying to breathe :?: Thanks for your reply.

mnjodette
10-10-2007, 06:35 PM
Have they ever done a pulmonary function test? That might help them pinpoint what's going on.

morning star
10-11-2007, 09:10 AM
NO BUT MY PULMON. ORDERED ONE TODAY IF MY INSURANCE APPRVS IT. HE SAID THE LUPUS MIGHT BE AFFECTING MY LUNGS.

Oluwa
10-11-2007, 02:41 PM
Hi Morning Star...

Mine goes like this...

I have left chest pain, coupled with back pain, left shoulder blade, shortness of breath prior I also had arm pain and intense pain under my sternum. I was thinking, oh dear another herniated disk...

My Rheumatologist diagnosed Pleurisy, prescribed Naproxen and Protonix for my GERD.

My PCP isn't certain it is that. He feels it maybe a few things going on inside. Part of the pain was from my GERD. Fixed that part with Protonix. I am thankful for that pill.

My PCP also injected cortisone into my rotary cuff for the arm pain. It work for my arm but not that left chest pain and back. I also have a order for a chest xray, which I will have done tomorrow.

But anyway..I am wondering if this is what I have and you too.. Pericarditis

It reads...If you have acute pericarditis, the most common symptom is sharp, stabbing chest pain behind the breastbone or in the left side of your chest. However, some people with acute pericarditis describe their chest pain as dull, achy or pressure-like instead, and of varying intensity. The sharp pain may travel into your left shoulder and neck. It often intensifies when you lie down or inhale deeply. Sitting up and leaning forward can often ease the pain. At times, it may be difficult to distinguish pericardial pain from the pain that occurs with a heart attack.

Other signs and symptoms often associated with pericarditis include:

Shortness of breath when reclining
Low-grade fever
An overall sense of weakness, fatigue or feeling sick
Dry cough
Abdominal or leg swelling

Humm..maybe...maybe not? Whacha think?
Oluwa

morning star
10-12-2007, 11:58 AM
I'm not sure wouldn't the Echo show whether or not I had pericarditis or not. I just saw my pulmonologist and he has ordered a Pulmonary Function Test and said the the lupus may have affected my lungs, my primary symptoms are SOB, even when sitting, worse when exerting and tightness in chest and some pain but not bad. It's just bothersome to be SOB all the time. He did say I do have asthma but would you be SOB all the time even with inhalers with ashtma? This is so confusing, I hope they figure it out soon, it's been going on for about a year.

Oluwa
10-12-2007, 12:19 PM
Hello Morning Star,

Oops...Yes, you are right it should display it. D'oh me! I do hope they find out soon for you.

My shortness comes and go, maybe I have perdicardium. I get confused too, one said pleurisy the other not. I trust my PCP more than my Rheumatologist because he has given me this blank stare on a few ocassions and he instructed me to stop taking Protonix. Which he doesn't recall. I was in terrible pain for months. Believing oh, swell..life with Lupus.

My GERD got worse than ever. Since being back on Protonix..it wasn't life with Lupus afterall, that I had to grin and bare it. If I had to, I think I would have gone totally stark raving mad.

Did your insurance approve it...and when are you scheduled? Do let us know the results.

Hope you find your wellness soon.
Oluwa

mtingler
10-13-2007, 04:31 PM
I have just went through a series of tests with my pulmonary specialist. I had been dealing with SOB(upon exertion) for about a year now. After I read in the Lupus book, by Dr. Daniel Wallace, the seven different things that Lupus can cause with the lungs I decided it was time I get busy finding out what is wrong. She ordered a chest x-ray and the pulmonary function tests. At the office visit she pretty well told me that it was interstitial lung disease from the lupus. The tissue becomes inflammed and does not heal normal and produces more tissue, then turns to scar tissue, thus making that part of the lung useless. She then ordered the heart echo and ultra-sound, and CT scan of the lungs. That confirmed what she thought. I repeat all this 6 weeks after the first tests to see if she can determine the speed of the progression. I am on 10mgs of prednisone she put me on for now. She calls that a low dose, I don't. She thinks she may jack up the amount of prednisone. Nothing stops the inflammation, a miracle from God can. Of course they think the meds can slow down the progression. :lol: I have been diagnosed for 12 years now and never had any organ involvment yet. That has been a blessing from God. I will be praying for you, SOB is not a fun thing. We must trust God, one day at a time. Hope this helps you out. Mel

morning star
10-13-2007, 07:52 PM
Thanks so much for your reply. I'm scheduled next week for my PFT Test. I was kinda thinking that I may have Interstitial Lung Disease or Pulmonary Fibrosis. Guess I'll find out soon, though, I hate to hear of you having this problem. God can work miracles. I sometimes feel as though I may be dying because of my breathing, just sleeping is hard if I don't use my inhaler before I go to bed I wake up struggling to breathe not wheezing just tightness and SOB. That's one thing I noticed though is my Advair does help probably because it has a steroid in it. My first noticable symptoms was 5 yrs ago after I had my daughter I had terrible joint pain went the to Dr and was told nothing was wrong after doing some lab. So I waited and after several months it's went away and didn't reappear until 2 years ago after I had a car accident. Well thanks for your reply and God be with you.

morning star
06-24-2008, 11:49 AM
Well my shortness of breath has been still ongoing and still no one can find out what's going on, been to the ER, he thinks I've got ILD but since my chest xray/lab and ekg are all normal he couldn't do much but give me more steroids, that was thursday so by Monday gasping again, rheumie gave me another shot of steroids told me to find another pulmonologist which I have but cannot get into until 7/31, ordered a CT Scan and it came back normal, had another PFT test and the guy who did it said it didn't look like it was much worse than the one I had 6 mos ago. I'm at a loss, what is causing me to be soooo SOB???? Guess I'll have to wait and see this new Pulmon. although since I've been put on a steady course of steroids 20mgs and then taper down, it's been alot easier breathing, so I've obviously got some inflamm going on other than just asthma.....??? :? :? :?

Oluwa
06-24-2008, 01:18 PM
Hi Morning Star...

May there is something going on with your diaphragm...thoracic diaphragm...not the gadget.

Since it controls our breathing....maybe...a thought.

Or are you an anemiec?

Swollen limbs and ankles....congestive heart failure...shortness of breath my auntie had that...hummm...cardio would have found that..

Something in the air, in the ventilation? Is it all the time, in certain areas, workplace, home, outside?

I hope they find out the cause, as that can be alarming and for all this time, Morning Glory,
Hugs..
Oluwa

laurid8967
06-24-2008, 06:26 PM
Morningstar -
I have had lung problems my whole life actually, and I have asthma. The SOB does not sound like its caused by asthma as there is no wheezing. There can be just SOB, but usually, the pul. will be able to hear crackles or wheezes somewhere. I have SOB on and off - just out of the blue BAM! I cant breathe. THis is a different feeling than when Im having a bout with asthma. I usually start wheezing long before Im really short of breath. Also, do you have an Albuterol inhaler (acute asthma) ? Not the inhaler you take every day, but the inhaler you use when you start breathing badly (acute attack)? If you do, and it does not help when you feel SOB, then its usually not asthma. This info, however, is with regular lungs NOT lupus lungs, so maybe its different, I dont know. If the steroid is working a little, then it sounds more like maybe the lining of the lungs is inflamed - pleurisy? THis is really common with lupus. Hopefully the steroids will give it a good kick and it will start to dissipate. I am on 20mg. daily, and its not too bad. Lousy sleep, but I feel so much better, its completely worth it.
I hope you feel better and find some answers soon. Hang in there!
Lauri

morning star
06-25-2008, 10:26 AM
Thanks for the replies, I was on albuterol but my old pulmol. switched me to xopenex as I told him it wasn't worked as good as I was having to use it all the time and it didn't seem to do much good, I'm also on Advair 500 2 x day, I do wheeze sometimes but sometimes I don't and I'm alful SOB? Well I'm ending my course of steroids today so we will see how well I do. I think maybe it's a combination of asthma and sometype of lung inflammation from the lupus but what I'm not sure. :?

Oluwa
06-27-2008, 08:35 AM
Hi Morning Glory..

So, how has it been since you stopped taking your steroids on the 25th..notice any improvement?

I hope so...

Hugs,
Oluwa

morning star
06-27-2008, 10:57 AM
Oluwa, Thanks for asking, so far I'm doing ok, I'm still SOB if I walk very far, but that's always been that way(for at least several mo's that is), I just have to slow down or stop. But now I'm back to having my daily headaches, but so far ol Ibuprofen has been taking care of them, but every morning I wake up with a new one!!! :x I had chronic h/a's and migraines before starting the imuran(AZA) but now they are starting up again, kinda concerning. How are you doing? Well hope you have a good and pain free weekend coming up. :D take care...

Oluwa
07-21-2008, 10:43 AM
Good heavens...I felt like I replied to this..humm..I remember reading it, Morning Star...

Every once in a while I do a check of view posts I've posted and I find one or two that has slipped me by..

Still having the daily headaches? Sleeping in a crooked position? Too many or too few pillows? I had woke to a thumper the other day, didn't subside till I started another new day. I think I slept with my neck in an awkward position...

Hormone related? So many things that can give us a headache...do you have FMS?

Has the SOB stopped since you slowed down, or are you still running...

Enjoying your summer thus far...us here..movies and more movies and swimming. My summer is dull this year, so afraid of a flare...

Thinking of you..
Hugs..love,
Oluwa

mumma7
07-22-2008, 02:28 AM
I went through the whole range of pft investigations and they found I had upper airway dysfunction which at times severely restricts my breathing. It always feels like it's coming from my chest though or muscle weakness in my breathing muscles.

jojo-at-the-bux
07-22-2008, 10:18 PM
ok i feel like im lookin in a mirror (kinda) when i read wats wrong with you. i have a left shoulder pain that comes and goes and on the bad days it feels like it goes up my neck and unnder my ear. i can hardly lift my arm it hurts so bad. i am so short of breath i cant walk and talk on the phone anymore, let alone hardly go up a flight of stairs. when i was seein the dr at first i would tell them and they did a chest xray and it was neg they said. they wanted to send me for a pulmonary test? lung function, but i never got to go with my problems with my medi cal. so i know i have something wrong, i just dont understand y they wont listen to me!

Wanda
08-07-2008, 10:33 AM
Morning Star,

Eating a big meal can make it harder to breathe. Better to eat small meals more often than to eat three big ones.

Also, breathing is something that is a natural function. Sometimes if we get our minds focused on a thing, it will seem to take on a life of its own and every little anomaly is magnafied. (We shouldn't think about consciously drawing every breath in and out.)

Also, just going out on the porch and taking a few long, deep breaths can get more oxygen into the mix. . provided the outside air where we live is not polluted. Doing this daily could help over all.

Leaving a bedroom window cracked about half an inch at night allows fresh oxygen to get into the room. We quickly deplete oxygen supplies in a bedroom with eight hours of us, and many times our husbands, breathing out carbon dioxide. Pretty soon we're both just breathing in carbon dioxide and little or no oxygen after a few hours of sleep. I literally smother at night when my husband and I sleep in the same room and forget to leave the window cracked about half an inch.

Hope this helps.

Wanda

morning star
08-18-2008, 02:05 PM
Hi,

I've been out for awile. Thanks for the posts. I ended up going to my Rheumie as I couldn't even talk without gasping for air, she gave me 160mg shot of steroids and then put me on pred for about 3 wks. I finally felt better and my breathing was 100% better than it had ever been. Well now this is starting about 2 1/2 weeks ago I'm getting short of breath again and now I can feel the pleurisy building back up again :mad: I also feel a little bit of friction rub when I breathe in sometimes but not all the time. Along with this I'm having achiness, joint pain, swelling of legs and swelling around my clavicle(I had my rheumie check this and she said it was probably tissue swelling from the steroids I was on-but wouldn't this go down by now it's been several weeks). It just seems like this lupus is waxin and waning on me all the time and never a reprive. The only relief I had was when I started my Aza and Plaq when the drugs started working I felt a relief for about 3-4 mos but it's like it's not working well anymore. Sorry for the vent, I'm just feeling depressed and tired for it all :(

misslisa1017
09-20-2008, 05:48 AM
I just wanted to add, that I too have been in a sort of flare for quite some time with something going on with my chest also.

I have no clue what's going on with me but it started out with some intense chest pain.

That worked it's way over to a mingling feeling of a walking pneumonia type when you take a deep breath in the throat uncomfortable feeling.

Can't explain it, unless you've been through it, you can't understand it.

Kept telling docs about it, but no one seemed to give too hoots.

Was already on ten mgs of steroids. Everyone thought that was too much to begin with. Rheumy wanted me on a stronger med, Imuran. But reg docs say no because of copd and lung issues and their fear of me going downhill.

Where do i turn? what do i do? IF this is attacking my lungs? Who do I listen to?

Right now I'm coughing up blood again for the second time this year and I'm sure i've got pneumonia again. Why does this keep happening to me. I quit smoking 7 yrs ago. I am so unhappy and so sick of being sick. And just so sure I have cancer or something worse. I can't win. I'm so discouraged.

misslisa1017
09-22-2008, 08:17 AM
To jojo at the bux

I too have the same pain, with the shoulder pain, uncomfortableness in the neck, pain in lung...what the heck.l

Docs have no clue.

I'm going for a chest xray today. I'm on antibiotics. Coughing up an orangy substance. What the heck? right?

It's rediculous. I'm so sick of it.

Just wanted to share.

Sometimes I wonder if all these drugs are helping or hindering

misslisa1017
09-24-2008, 07:33 AM
Here's the crazy news

No pneumonia. My chest xray is negative. So someone tell me why , oh why do I have lung pain on one side? WHy oh why do I have sob? and why oh why do I have this weird pain that comes up through my throat and neck and that can hit my shoulder?

No clue. I put a call into my rheumy, but have heard nothing as of yet. I'm so disheartened. Hope to hear from someone. I'm on antibiotics along with a long slew of other meds. Inhalers.

Plaquenil prednisone. and 11 other pills to go with my list.
I hate being sick. I hate this journey. I hate this pain I hate this.

morning star
09-25-2008, 11:54 AM
Melissa,
I can totally relate to your frustration. My chest pain is still undiagnosed, I feel like I should be on mystery diagnosis, haha. I still have sob but I just take my inhaler, I still have pain in my chest along with a rub I feel first thing when I get up from laying down, no one know's why or has a clue, had neg CT/chest xray/echo. It's so frustrating. If you have some pain medicine I would take it and pray that the pain would ease up. A friend of mine whose a physician said it might be microinflammation and very hard to pick up on a scan but it's there. I'm surprised if your on steroids that it's not helping? Well hope this finds you feeling better and may you have a pain free weekend coming up. Hugs :wink:

Oluwa
11-13-2008, 04:08 PM
Hi you Morning Star..

Thinking of you, wondering how you are. It's been awhile since I've seen you..

Missing you.
Hugs,
Oluwa

morning star
11-17-2008, 03:34 PM
Hi, thanks for asking about me. I've still been dealing with my pleurisy type pain. Went to the ER again and they just gave me 4 shots/chest xray and EKG and sent me home all tests were normal. Just think I should be on mystery diagnosis. haha. The pain only lets up when I get a steroid shot. So it's obviously some type of inflammation. I still can't sleep on my right side, I can lay there awile but only for a little bit then it starts throbbing so bad I have to turn over. I've also been dealing with horrible migraines. PCP gave me some maxalt, it seems to work pretty good. Well gotta go for now, wishing you a pain free day!!!

Oluwa
11-18-2008, 08:44 AM
There you are Morning Star...you are welcome. I do wonder how you are...

I am sorry to know your pleurisy is still in the forefront.

When they do a chest x-ray, do they have you lie on the side where the pain is? It may show the fluid whereas the one standing upright doesn't. It is called a decubitus chest X-ray...

Have they done any blood work to determine if the pain is or is not a bacterial infection of your lung because an antibiotic may resolve the infection.

But remember with Lupus we can be allergic to sulfa drugs, so be careful before taking sulfa-based antibiotics or ask for the alternative antibiotics if you do indeed have a bacterial infection.


Hugs.
Love,
Oluwa

morning star
11-18-2008, 12:13 PM
No the chest xray I had done last was done while I was sitting up in bed. However, I will remember to mention that to them next time I have one. Yes I have bloodwork done everymonth since I'm on 3 different studies for SLE, however, my bloodwork is always pretty much okay. Well maybe one of these days it'll come to a head and they'll finally figure out what it is. :lol: