Log in
22,643 members18,032 posts


hello lupus buddies,

I am still fighting for answers to my breathlessness as its become a lot worse over the last 2 years. I'm not doing strenuous exercise to justify being like this. even unloading the washing machine or hanging laundry on the line can leave me gasping? my legs suddenly become heavy and lead like. along with all the usual pain and headaches lupus and fibro gives me; it seems it dumping more symptom's on me to live with.

ive finally got a doctors apt tomorrow after waiting 2 months for a cancellation so im hoping they can help me as daily life is getting harder. I even have to literally concentrate on how to walk? ? its like my body has 1st gear only? sorry its hard to explain what im feeling.

my lips are often blue aswell and I constantly breathe through my mouth as I cant get enough air via my nose.

I have high blood pressure (bottom number too high) .

I would be gratefull for any advice please, thankyou xx

16 Replies

This is very scary. You need to be seen by the dr immediately. Please keep us informed. Good luck to you


What tests have you done so far and how did you fare? I suppose the tests would look at both the lungs and the heart. Any explanation to date for your high blood pressure?


i had a chest xray this febuary but have never been told the results, ive had a poorly yeafar what with a chest infection, shingles and lupus flare all summer long. saw my rheumy last Friday and she sent me for usual blood test and thyroid blood test. she doesn't seem interested in me being breathless she says " its just lupus and/or fibro" but I cant live like this.

I had to call in sick for my first job today as I almost passed out walking there, at a gentle rate. managed my 2nd job as started at 1pm and not so far to walk but im totally drained what with being breathless but excessive sweating. im pale and got a pounding headache now. drinking plenty.

sorry to be negative but ive really truly had enough of living like this x


A simple chest X-Ray is not enough and breathlessness is not normal if your lupus is controlled. Try and be more assertive with this doctor next time she suggests that is normal - ask her how she wd feel if she was in your shoes. Even so, I'm of the view that regardless how minor, normal, medium or critical something is that affects our health, a doctor is there to make it better, so it is irrelevant whether she thinks this is normal, she should give it a go at sorting it out or at least attempt to.

There's nothing worse than not being able to breathe - it affects the entire body as the blood doesn't get enough oxygen to do its job, no wonder you're exhausted.

Push that doctor next time you see her, this is bit on!


I wrote "this is not on" but predictive text went haywire :)


sorry , I ment to write ; a poorly year so far! grrr brain fog :( x


You need to ask to see a chest specialist.

I have a normal xray and hdct but a pulmonary function tests (not the simple ones that can be done at a GPs) revealed I had early stage interstitial lung disease (inflammation of alveoli in the lungs which reducing your ability to get oxygen into your blood). I get out if breath doing anything, climbing stairs, standing for prolonged periods etc. I also feel faint easily. Fainting/feeling faint is not normal and can be very dangerous.

Please make sure you get referred to a chest specialist and take it easy.


Have you been tested for COPD? It's a simple test breathing into a machine which measures your lung capacity. You then have a couple of puffs of an inhaler (ventolin) wait 10 minutes then repeat the test. It's worth getting checked out at your doctor to rule out anything else. Good luck.


no I havnt been tested for COPD, what is it please? I have written down advice from this wonderful site and my fibro site as without you guys I would be truly alone x


Hi caninecrazy. I can't of course say whether you have COPD or not but my husband has it - COPD stands for chronic obstructive pulmonary disease - and I have found various websites useful in understanding it a little better. Below is a hyperlink to the NHS Choices information on it, which you might want to refer to.


My husband is on a daily inhaler, as lou-lou says, and it helps him a lot. Without it, he gets dreadfully breathless, his heart rate goes through the roof, and his lips take on a blue tinge, plus he gets very tired.

Whatever it is in your case, I do hope you get more help from your doctors. Unfortunately, as purpletop says, it is often necessary to be pretty assertive. I know this can be difficult, or at least uncomfortable - from my own experience I see one consultant who is very unforthcoming and I constantly have to 'battle' to get answers, or even basic information at times. I don't like having to be blunt, etc, and I am often treated as though I am being a pain but at the end of the day it is better than not knowing stuff. Good luck!


You really need to put your foot down and ask for a lung function test,at the chest clinic,.

I had this , and got pneumonia three times, to be told that I have lupus induced connective tissue lung disease. lupus can cause the tissue in your lungs to stick together, thus reducing your air intake. Steroids are the main treatment, but it's important that you get this sorted as inflammation in the lung does not show up on x-ray. Go into the Dr's room and be assertive, but polite. I do hope you get this sorted quickly, as it is frightening. Let us Know please


Hi caninecrazy....I feel for you too as I have breathing problems on and off. Most of the time I can survive, except when it's at night sometimes. Then I start to panic which only makes it worse. I have not addressed as I am seeing rheumy tomorrow to go over blood work, and he believes I do not have lupus. Not only is it hard dealing with the symptoms alone, but finding someone who actually believes you. I hope you find answers and can help others on this site. I notice when it is very humid, I have even more of a hard time. I also noticed it is almost like sleep pains when I am sleeping and wake up suddenly like I stopped breathing. Very scary. I need to go to sleep center nearby. I wonder why this is happening too. Almost like my brain forgets to move air thru my lungs. Good luck! And hope you feel better.


Didn't mean to write sleep pain...automatic word came up, meant sleep apnea .


thankyou everyone for your kind words and support.

saw new GP and she said im to phone my rhuemmys receptionist in 7 days for blood results and then to make an apt with my designated GP (had to ask receptionist who it was as didn't know) she is so popular that apts are taken quickly, sept all gone already so I am to phone every to see if a cancellation comes up with her.

she listened to my chest and said its clear. she refused me a peak flow test as I don't have asthma. apparently I am jumping the gun as she thinks my breathlessness is due to panic and I should slow down and calm down.

she wrote on computer about my excessive sweating but again im to wait.she said I need to loose weight and exercise more! well I would if I could catch my breathe!

im so disheartened by my constant battle to get help and to be listened to and believed.

hugs x


I can't believe it! In fact, I can - I should have already thought that the doctor would rather go for anxiety, diet and all that inane stuff rather than take everything seriously. Let's hope the rheumatologist will take a different view to next steps.


Hi, I have read this post with interest, because I have having the same complaints. I saw my Rheumatologist yesterday and he said," my symptoms were being caused by steroids". I have been on them for 5-6 years and my current dose is 25 mg. I am to reduce my intake by 1mg every 2-4 weeks. He will then see me again in 2 months. {I have the moon face and Desperate Dan upper body)


You may also like...