I was wandering if anyone has this problem and how they deal with it on daily basis. Since the onset of my lupus many years ago I have experienced constant weakness, tightness and pain around my left lung and ribcage. The tightness in my ribcage causes breathlessness and restricts my movements. I cannot walk at normal pace or hurry otherwise I become breathless. carrying anything heavy other than a light handbag causes distress in my lung and breathlessness. my lung is also very sensitive to chemical fumes like tobacco smoke, exhaust fumes and other chemical vapours. these cause a burning sensation and distress in my lung and breathlessness, these chemicals also cause me to become quite ill because of hyper sensitive issues.
I have had lung function tests in the past, which have shown restriction in lung function, however lung xrays and ct scans have been inconclusive and don't show any lung damage. my rheumy has always put it down to pleurisy /inflammation. I used to be given steroids, which helped in the past but after a while not even this had any effect and meds for asthma does not help, just make me ill.
I am now told that my lupus is quite and in remission (I call it supressed remission on plaqunil daily). however my lung and rib cage symptoms still persists and impacts on me daily. when I talk about it I feel like I am being dismissed by rheumy because as far is he is concerned I should not be experiencing this because I am in my fifties and my lupus is in remission. He doesn't seem to understand how much this impacts on my life.
Is anyone else experiencing this problem, because I feel like I am talking but no one is listening.
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field
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Hi I'm going through same thing but mine happens every weekend when I take my methotrexate but Dr's saying no its not that as my blood results improving so methotrexate is working .
I have something similar i had double pneumonia back in april 2014 was in hospital for three weeks since then i have continues pain mainly in my right lung area when its at its worst i can not lie in that side to sleep it hurts when i cough sneeze etc. I can not rush around and carry heavy objects (very frustrating) i also get some pain on the left but not at bad. I also get alot of chest pain heavy tight restricting feeling. Consultant has sent me for CT scan but has also ref me to the chest clinic again to see if they can shed any light on it. I feel your pain and frustration.... Take each day as it comes and just keep telling your consultant your symptoms.... Hope you get some results x
This has been an on going symptom for many years now. I also have high blood pressure and recent x ray showed my heart is slightly enlarged. my gp says its due to blood pressure, however I believe my lung issue is causing my high pressure which is affecting my heart.
Thanks for your reply I will just have to be persistent as you say till I get to the bottom of it.
I have similar problems, I run out of breath, sometimes I can't finish a sentence because I feel I've no air left. Mine too is on left side, I had lung function test etc was diagnosed with asthma for a few years even though I knew it wasn't. Eventually I was sent to another chest consultant who arranged a PET scan this concluded, I have scarring of the lung and diagnosis of mild fibrosis. I haven't been give any medication for this. It was explained that I have to be careful of catching chest infections as this will lead to more scaring and in turn cause more problem for the lung. I don't know if this is related to any of the auto immune diseases. I take hydroxychloroquine, asprin, and paracetamol. None of this I presume will help the lung but whenever I get a cold I go and get antibiotics as I know it will travel to my chest! I also have a yearly flu jab. I also bought myself a sats probe and keep an eye on my oxygen levels.
Sorry it's not helpful in answering how to make it better, I've just learnt to go at a pace that suits (very frustrating sometimes) I have noticed putting on weight doesn't help which is hard when you can only do gentle exercise. X
I also have pulmonary fibrosis caused by the lupus and am in the moderate range. Ask your chest specialist to send you to a physio for breathing and chest exercise. I did a one to one course once a week and did the exercises at home twice more a week. It is amazing the difference it makes. I can walk further without getting as breathless and also lost the stone in weight I needed to lose. They can also help with the clearing of the mucus from the base of the lung by a simple daily breathing exercise.
Hi field. I told my rheumatologist that I was getting breathless and coughing etc and he sent me for a CT scan. That showed the fibrosis and also bronchiectasis(which is widening of the tubes in the upper part of the lungs which means lots of mucus).
thanks for replying. I don't have a cough generally, except for when i have a cold i cough up a lot of stuff. I did notice last time I was at the gp I was asked to breath into a brochulator to check lung capacity. after blowing into it a few times I started coughing really badly for quite a while afterwards. it also showed my lung capacity was quite low, which is usual for me, but xray didn't show up anything except a slightly enlarged heart. I will just have to keep on until I find the answer I guess.
hi chris21 thanks for your reply. what is a PT scan? I have had xray and mri but not a pt scan. I catch infections at a drop of a hat, in fact I have one now and have been coughing up stuff for a week now and pain in left lung has increased. I was diagnosed with asthma but I don't have asthma and the asthma med dont help and do not agree with me anyway. I am sure I have some sort of lung damage due to lupus but it just does not show up on the scans for some reason. I read a paper on lupus and lung damage a while back and this professors said on autopsy something like 90% of lupus sufferers have some form of lung damage, even those sufferers who have not complained about lung problems show signs of lung damage, which I thought was very interesting.
Hi, 51 yo lupus since 05. I think you have thoracic outlet syndrom. A good physical therapist will apply pressure and re alighn your rib cage. Not painful, dangerous or major complications. I felt so much better when it was fixed. No tests dx it but you have your sumptoms when you have TOS. It also made my pluericy almost gone since i had them work on it few years ago. Not sure id good chiropracter can help. Good luck😷
Hi from SUNNY South Africa. I feel bad for you you. I'm a 63 year old female, with all the same systems as well, besides a bit more. The heat in South Africa tends to aggravate the situation. I tend to get the same treatment for this doctor here. Would appreciate any feedback on your replies that you receive
thank for your reply all the way from south Africa. I really don't know how you cope with the heat, it must be so difficult with an illness like lupus. if I stay out in the sun for too long in England I become ill, so I can only imagine how it must be for you.
I have the same thing. I thought it was me because of all the test say I am fine. But I don't know what to do neither but pray it shows up for the doctor or check myself in the crazy house. I am going to be praying for you to get some relief. Stay strong.
Its really frustrating and annoy because their test dont show up anything, as far as they are concerned there is nothing wrong. But they are not the ones who have to live with the restricting symptoms. If they had to live with it I am sure they would do everything in their power to get to the bottom of it. It is a big deal to us because it impacts on our daily life and living, they don't get it because they don't have to live it.
A PET scan is similar to an MRI or CT scan but slightly superior (so I've been told?) a small amount of radiation is injected into the blood stream and then 3d images can be taken of the inside of the body looking at tissues etc. I think they tried this to rule out lung cancer.i had previously had all the lung function tests, MRI and CT scan without any conclusion.
Hi there, there is such a thing called Costocondrities which people with lupus and Hughes syndrome seem to get,which causes chest and rib pain,many gps don't think of that, but ur rheumy will ,might be worth a try. By the way,the other name for this is ( Tietze's syndrome.)
can I ask what are the symptoms of Costocondrities. Does it cause hypersensitivity of the lung affected. for example my left lung is hyper sensitive to all chemical fumes such as tobacco smoke, car fumes, house hold product fumes, industrial fumes. these cause pain and increased tightness in my lung. also I cannot carry anything heavy because it increases breathlessness?
I can't understand how they don't feel this is related to your Lupus. Even without the X-rays being conclusive your lung function showed a restriction therefore they are abnormal and it sounds like you have inflammation.
I find it bad enough with the inflammation in my ribs on and off when I've pushed on too much (today) and I remember how I felt after having pneumonia and the restrictions it caused.
I really feel for you as it's normally steroids and inhalers that can help but as you say you have tried this.
Have they ever sent you for a respiratory point of view
My rheumy has always said it was inflammation in the past, but now that my lupus is quieter he behaves like it should be gone. when I mention it he just says, but we have done tests and I want to scream, but it has not gone away. This lung prob in long standing and constant. if it is inflammation that never goes away, or could it be that I have sustained some sort of lung damage that has not yet been detected? I don't know.
can you please tell me what a respiratory point of view is?
Got same problem every time I go and see gp I just get given indigestion tablets which either brings rash out or seems to make pain worse so just try to keep dairy on what I eat and take gaviscon I don't want to go out and eat anymore or go for drink like we used to life seems to be a struggle at moment
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