SHORTNESS OF BREATH

mumma7 · Tadpole Joined: 19 Oct 2007 Posts: 19

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 · Posted: Tue Jul 22, 2008 9:18 pm Post subject:

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 · Posted: Thu Aug 07, 2008 9:33 am Post subject:

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 · Hamster Joined: 15 Mar 2007 Posts: 84 Location: oklahoma

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 Sad

misslisa1017 · Little Guppy Joined: 16 Jul 2007 Posts: 30

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 · Little Guppy Joined: 16 Jul 2007 Posts: 30

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 · Little Guppy Joined: 16 Jul 2007 Posts: 30

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 · Hamster Joined: 15 Mar 2007 Posts: 84 Location: oklahoma

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 · Posted: Thu Nov 13, 2008 3:08 pm Post subject:

Hi you Morning Star..

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

Missing you.
Hugs,
Oluwa
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morning star · Hamster Joined: 15 Mar 2007 Posts: 84 Location: oklahoma

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 · Posted: Tue Nov 18, 2008 7:44 am Post subject:

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
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morning star · Hamster Joined: 15 Mar 2007 Posts: 84 Location: oklahoma

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. Laughing