My lungs have been affecting me so bad, what could it be?

[missamberyo]

Ok, so I been getting severe chest pain all over my chest, it feels like my chest, but the doctors have been saying its my lungs. My lungs hurt so bad sometimes to the point where it spreads to my whole entire back and front side, from my neck down.They say I have inflammation around my lungs and it seems like I am always having problems. Do you know what causes such problems? Cuz at times, my lungs will just start hurting for no reason, so can anyone tell me why this happens all of a sudden? It gets so bad that I have to be hospitalized for it, but I just don;t know what triggers it.

[Hidden]

Have had pluresy inflammation of the lining of the lungs with both SLE and infection. Yours sounds like the SLE do you have a persistent cough? If so that should be ruled out. Otherwise it sounds like they need to get on top of your SLE a bit more.

Never found what triggered mine apart from the infection once sorry not much help good luck hope your a bit betters sion mines resolved now my treatment is a bit better.

[missamberyo in reply to Hidden]

No, I do not have a persistent cough, but they have diagnosed me pleural inflammation, but some of the symptoms that come with that diagnoses, i dont have, so they rlly do need to look more into my lung problems.

[bozelea21_ in reply to Hidden]

Did u get spots on ur lungs they diagnosed me with same thing

[WestEndGirl]

Are you photosensitive? The sun swells up the scarring on my lungs and if it's very sunny and hot I find it hurts to breathe by the end of the day at work. Last year they wouldn't let me stop taking prednisolone because of it. Would your GP send you for an xray so they can have a look? Good luck, hope you feel better soon.

[missamberyo in reply to WestEndGirl]

Hmmm....now that im thinking of it, I might be photosensitive, ill have to ask my doctor about it. Thanx for bringing that to my attention

[Hidden]

Your doctor/s has informed you it is PLEURAL INFLAMMATION / PLEURAL PAIN created by your SLE. SLE relapses and remits. Symptoms can appear suddenly.

Be aware that this symptom can spiral out of control if not medicated / treated properly promptly. Do not ignore symptoms. Symptoms can mask/hide other symptoms. Consult with your doctor/s to be certain what is what and how best to treat / manage symptoms. Keep a detailed record : dates and symptoms : for your doctor/s use to better manage your re-occurring symptoms.

SLE is SLE. It is in constant flux ... activating with or without a trigger. This is the bothersome relapse/remit quality of SLE.

Known triggers : change in weather temperature and or barometric pressure, change in altitude, pollen, dander, dust, mold, toxins, bacterial infection, virus, diet, ... the list goes on and on.

Each patient has their own individual triggers. Do your best to discover them. Make your home as allergen free as is possible. Wash your bedding frequently. Avoid known triggers. Be wary of possible triggers. Live your life and enjoy it as best as you can.

Be well. Take care.

[missamberyo in reply to Hidden]

Thanx for this information. I will definitely watch out for this

[Olibop]

I suffer from chest pain too my lupus doctor said it is pleurisy pain !!! I feel that my asthma spray sometimes helps !!!!!

[missamberyo]

Hmmm...really?

[Hidden]

They should do some more test chest xray make sure there's no fluid an if your getting breathless find the cause asthma or infection or other lung problem are you on methotrexate? This can cause lungs to srinking in very rare cases good luck

[Hidden]

I also get a horrible pain in my neck chest and back and it worried me so i went to my gp who said it was inflammation of my gullet due to the steroids so she put me on a tablet called omeprazole i take 1 in the morning with my steroids and they work wonders I've had no pain since xx

[wendymd]

Hi, I really feel for you as I suffer with my lungs due to the lupus. Mine comes in the form of pulmonary haemorrhaging (or bleeding into the lungs) which flares every 2-3 years at the moment. It may be worth asking your GP or consultant to consider doing a CT scan and/or broncoscopy to see if that shows up anything, as with me x-rays didn't spot what was going on. The broncoscopies aren't pleasant but if it gives more info then maybe worth going through. I sometimes get pain in my back around my left lung but have been told its muscular and usually sorts itself out with some painkillers.

I hope that helps and you start to feel better soon x

[shlinde in reply to wendymd]

Hi wendymd , I was wondering how you are doing and if they ever found what exactly was going on in your lungs? I have the same problem... for 3 years now and 2 years ago my lungs started bleeding on and off. They put me through all the tests CT scan , bronchoscopy, countless X-rays, biopsy, and more. I was hospitalized off and on for months. They found 3 nodules in both my lungs but after did not really wanted to commit to the diagnoses of SLE related lung problems. There was no virus, bacteria nor fungus found and when I was put on prednisone for a Lupus flare my nodules disappeared and had formed craters in my lungs. I found a research paper in a publication about lupus related lung problems in the USA (I am in Canada) and they were talking about the same symptoms. The bleeding the nodules and the craters after the nodules disappear and they clearly said it is one of the symptoms caused by lupus and should be treated immediately with immune suppressors /meds like cellcept.

I am waiting for my appointment in a lupus clinic and hope they will have an idea what to do because everybody else is helpless (my rheumatologist , pulmonary specialist, family doctor) and tells me I should monitor and as long as it stays dormant I should be ok. Bt this does not help and certainly does not give me any comfort

Please let me know how you are doing! Because what we have is very rare and I hardly can find people to talk to.

[AngelaW]

Hi, my original diagnosis of Lupus has now changed over to Connective Tissue Disease and last year I started having problems with my lungs - not the same as you though - I had pain but could hardly breath. My GP sent me to the hospital where I had a CT scan and xray. The scan showed one of my lungs had collapsed. I attended the respiritory consultant at the same local hospital and after 3 appointments he actually told me there was nothing wrong with me that losing a bit of weight wouldn't solve - no actual answers as to what was/is wrong with my lung, infact no answers at all regarding my lung unless I asked him a direct question!! My husband and me were totally disgusted. I searched the internet for a specialised chest hospital (after seeing the footballer who collapsed was taken to a 'chest' hospital) and found the Liverpool Heart and Chest Hospital. After seeing my GP I told him I would not go back to my local hospital and wanted a referral to LHCH and I now have an appointment later next month. As it's a specialist hospital they don't just have one respiritory consultant, they have many who specialise in different respiritory conditions. I have looked up the doctor whose clinic I have been assigned to, he holds a clinic for a specific condition, I then looked up the condition and guess what, one of the main causes is CTD! I could be wrong but I don't think I'll be told to go and lose weight or that there is nothing wrong with me! (I'll post a blog when I've seen him). My point (rather longwindedly!) is don't put up with treatment you don't feel is right or consultants who treat you as a joke, see if there is a specialist chest hospital near you, or within travelling distance.

I was in my GPs surgery earlier this week and I asked for a copy of the letter he GP had sent to LHCH, and one of the comments in the letter said I had reduced lung function with no reversibility - no-one has actually told me this.

I hope you get sorted, lung problems are frightening. Take care, Angela xx

[nanny4 in reply to AngelaW]

My daughter developed chest pain then became a bit breathless,she went to her g.p who listened to her chest,told her she had a chest infection,gave her steroids and antibiotics,chest xray showed mild infection.

2 days later she could hardly breath(she is also asthmatic) she went back to doc's who sent her to A.E ,she had another chest xray & oxygen,turned out that in 48 hours it had turned into pneumonia,now she is on 20 steroids a day plus even more antibiotics.

Because she had a pre existing lung condition she should have stopped het immunesuppresants until the infection was over,nobody EVER told her this,so that is why it turned into pnuemonia so qui.

If you are ever unsure of things,make sure you get things checked ASAP.

Take care Sandy.