pleuritic pain

[HeatherR]

I was reading Bethanne's post, and I didn't realize that this pain will either stay or come back. I am completely new and have no idea if this is what I have. I'm in limbo still.
My question is this: I had a chest x-ray for severe pleuritic chest pain, and when the doctor called me back, all he said was that I had some scarring on my lung. I was shocked about the scarring, because I've never had pneumonia or anything like that, but I was totally baffled that he mentioned nothing about pleurisy or the like. He just told me that if it didn't get better call him in a month.
Do you think that I never had pleurisy? Or that this is a pain that's going to stay with me and has nothing to do with my lungs in general?
I guess I just don't get it and I don't understand at all. They took a front x-ray, and a left side x-ray, but not a right side and that is where the pain is.
I can still feel the pain, but it is not severe.
I know this is long and probably makes no sense, but if anyone has any information to share, I would love to hear it.
Thanks,
HeatherR

[Joandublin]

Hi heather
I would love the answer to this one too! I have had right lung pain now for about four years. Was diagnosed with SLE in January of this year after a long process....
Anyway the pain in my lung has NEVER gone away. Have had two chest xrays in that time - one only this week and they said they were fine.
I am beginning to believe that this pain will be with me til the day I die and no one will ever be able to tell me what is causing it.
It is so frustrating that I have left word with my family and friends that if I die suddenly or in an accident or anything I want them to ask for an autopsy to find out what was causing the pain and that whatever it is I want it on my tombstone
It hurts all the time. Every breath I take hurts. Some days and nights it is next to unbearable. Other days it is milder and I have just learned to live with it. It was the first thing to 'go wrong' so to speak, and it started me on the road to this SLE diagnosis. In the meantime I have had a camera down my throat and my gall bladder removed in a vain effort to 'fix' it!
Best of luck and will be watching for the answers.....
Luv n stuff
Joan

[HeatherR]

What I don't understand is why aren't they giving pain meds? My doctor never said anything about helping me with the pain! When I first went in he offered codene cough medicine to help me not cough. I said I had some at home. Turns out not very much. I called the office to get more and he didn't give it to me. At first I was taking codeine that I had from a root canal/ bridge, but I want them to offer me something, or at least try to figure it out.
I'm starting to deal with alot more pain, and it scares me because I have zero tolerance. Never have.
Anyway, thanks for answering the question; I kind of thought that was gonna be the answer I received.
I hope they find an answer for you and for me!
HeatherR

[dragonfly70]

Hi,

I have another post about lung issues. They told me that I have interstitiial markings and hyperinflation. I also have pain on the left lung (which is where the markings are...whatever they actually are). Anyway, from what I read on the internet, the scartissue is a result of inflammation. Which I would imagine would be painful. Assuming my markings are a result of inflammation, then that's probably why its hurting. That is probably what you are going through. I would have thought your doctor would want to order more tests, especially since you have pain, at least to rule out interstitial lung disease. Are you short of breath?

Maybe a second opinion would be a good idea.

Good luck and I hope you find answers.


Gayle

[HeatherR]

No, no shortness of breath. I have been sick with three severe colds with cough since January. Once a month like clockwork. I also had a week of nausea that I couldn't account for. I've been coughing alot.
I'm not coughing anymore, but when I was I would wake up and cough so much that I could not get a breath after. I literally could not get breath in my lungs. It was like they would push it back out. I would have to struggle, and make sure not to panic so that I could breathe normally again. I just thought it was because the cough was so bad. But it scared the patooties out of me. That happened four different times.
Then came the pleuritic pain. I had called the dr the day before because I thought maybe I had a sinus infection because my right cheek was tender (still is) and by the time I was at the doctor I could have cared less about the sinus. It hurt so bad to breath on the right side.
He gave me levaquin and offered the codene and ordered the chest x-ray. I never told him about having a hard time breathing, because I was so focused on the pain.
Anyway, it's much better but not gone. I can feel it on my right side under my arm when I breathe, and I can really feel it when I lay down or try to lay on that side.
The horrible thing is that I smoke and I have to just quit. I can't believe that I have such pain and I still go out and have a cigarette. pathetic. But when I get scared, the first thing I do is want to smoke. So Dumb.
HeatherR

[BethannUK]

All I can say is (((Hugs)))
but I promise not to hug too hard.

I do so know how you feel and wish I could help you.

What helps for me: My electric recliner chair is a life saver- the only way to get comfy- and the District Nurse friend of mine gave me a "repose" mattress- an air filled li-lo type mattress that is thin but helps with pressure relief and redistribution, and not allowing the fabric from the chair to irritate my skin. I suspect the plastic nature of the mattress cover has had other hidden benefits for my chair as well (oh sigh)

One remarkable thing I have found- although it doesnt work on the back part of the chest pain, a TENS machine was remarkably good at the little twingey pains that followed along the bottom of my ribs in the front- the pain nurse said to just keep experimenting with the settings.

In regards the TENS machine, may I respectfully recommend that no matter how bad ones pain that starting at 9 is never a good idea?

[Lily]

((((((Heather)))))))))

I'm really sorry you are suffering so much from this and that you have little in the way of pain or disease modifying meds, mainly because as I understand it they have suspected MS in you for over 12 yrs and not looked at the possibility of things like SLE? I know that when you go back to the Neuro you will mention all the other stuff thats been happening to you that may point him in an entirely different direction. Things that you didnt realise were relevant to whatever it is you have. Its very possible that he will suggest a Rheumatologist to check you out and your GP will need to provide a referral I guess? Not sure how things work where you are.

By the sound of things, REGARDLESS of what's going on you should ideally see a Pulmonologist as soon as practical to check out whatever this problem with your lungs is, especially as the GP has since found scarring. Its impossible to speculate whether this is actually pleuritis which is common amongst lupies and is also presenting in Bethann who has a different disease altogether, not SLE . A Pulmonologist will run very thorough testing on your lungs and their function and at least be able to treat this part of your problem more quickly and hopefully prevent any further scarring and possibly find the cause. For me right now that would be a priority.

Then I would be visiting a Rheumatologist for a thorough work-up for the connective tissue diseases. Whilst your Neuro is good with any neuro probs and many of us see one because we also have Neuro probs its very unlikely he will do a complete workup and know all there is to know about SLE and associated diseases. For most of us our main doc is either a Rheumatologist or Immunologist and they refer us out to other specialties if necessary when something requires a more specialised look than they can provide. Our Rheumy or Immuno usually co-ordinates the show and gathers info from the other specialists, at least that ideally how it works. In your case if you see the Pulmonologist first then they will at least have that information up front and you can get this attended to because it does need looking at now.

I wish you good luck with your investigations and the sooner they can find the cause of your illness the sooner they can get you on the right meds to help you to feel better.

Sending hugs,

love
Lily

[HeatherR]

Thanks everyone, for the great advice and support. Lily, I'm going to print out your post so that I can talk to my gp.
This is a hard journey, and it's very nice to know that there are people out there who can sympathize, give advice, or just listen.
Thanks so much,
HeatherR