Anyone with breathing problems?: Hi everyone, i... - LUPUS UK


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Anyone with breathing problems?

jacqueline121 profile image

Hi everyone, i have been having problems recently with has been an ongoing thing for a few years but i mainly ignored it as it didn't last long and then i wouldn't get it again for months. recently its been much more often though and friday i was up all night because of it, and didn't get to sleep until 7.30 Saturday morning. Even on Saturday it was on and off during the day. A few weeks ago i was diagnosed with atrial fibrillation...a rapid irregular heartbeat by two separate G.p's by stethoscope but when i got to the hospital it had stopped and the ECG was normal. I wore a heart monitor the week before last and when i rang my doctor's surgery i was told to make an appointment to discuss the results with my doctor, so i know something has shown on the monitor, but couldn't get an appointment until the 25th. last Friday i had an ultra sound on my lungs and heart but don't know the results of that yet. that was ordered by my Rheumatologist.

My systems are like i'm forgetting to breath, and then start gasping, then sometimes just going upstairs makes i feel it's hard to get enough oxygen. Also my diaphragm feels weak as if it hasn't the strength the take deep breaths, also i have a sensation in my throat, like its hard to swallow. I know i have some fibrosis of my lungs and other organ damage, but i haven't experienced such breathlessness and palpitations before. I'm starting to worry that it's pulmonary hypertension. Does anyone else have similar symptoms. Thanks very much for reading. All the best xx

12 Replies

hi jacqueline, yes i have these 2 also if i bend down to pick something up even if im sitting down i get really breathless and lots of chest infections, however i was diagnoised 2 years ago with emphazema AND copd sometimes it really worrys me that i wont be able to catch my breath , do u feel that hun, ive not heard of pulmonary hypertension but i am being tested for pulimonary fibrosis, the consultants tell me smokers lungs are effected and drinkers kidneys are affective as lupus attacks ur weakness ??? i havent read this anywhere so how true this is im not sure, i was diagnoised 3 years ago after 15 years of various symptons it just seems since i was diagnoised im "ill" every day with one thing or another to be honest sometimes i wonder if being diagnoised has really help i know lots of unfortunate suffers out that cant get a diagnoises , sorry if i dragged u down a bit hun x

Hi Kitty, thanks for your reply. I did used to smoke but haven't done for the past two years...but i smoked for many years so i guess the damage has been done. I did have a spiral test???not sure if that's what its called...where you blow into some kind of machine to measure oxygen etc...and i know it came back below normal...that was a few years ago and not long after that i quit smoking. yes it does really worry me that i can't catch my's a horrible feeling and a couple of times i thought i was going to pass out. I'm also worried about going up and down stairs as that can bring it on. Is there no treatment for your copd?? I really feel for you. it is a horrible thing to live with. God bless x

There is quite an array of pulmonary disorders that can be caused by autoimmune conditions. For instance, after 2 years of being fobbed off, I've recently been diagnosed with chronic eosinophilic (allergic) pneumonia. I recommend you Google pulmonary disorders and autoimmune disease, also by individual AI condition, i.e. lupus, Sjogren's, APS, etc. and see what you come up with. Might be helpful to take what you find with you to appointments to ask docs about.

Purpletop profile image
Purpletop in reply to Coppernob

I never heard of allergic pneumonia before, this illness is so weird, causes all kind of reactions!

Coppernob profile image
Coppernob in reply to Purpletop

Yep, all 'good fun' innit?! My specific eosinophlic pneumonia (there's a 'family' - oh goodee :-) ) is ABPA - allergic bronchopulomonary aspergillosis. Bet you wish you had one of those, don't you?! My blog's got a bit of stuff on it. But I'm such a newbie to blogging I don't even know how to direct you there. It's on and the blog's called Judysjottings. Try searching for that, or APS, Sjogren's, pneumonia, etc. if you're interested. (Good luck!)

Purpletop profile image
Purpletop in reply to Coppernob

Thank you, I will. I just woke up to the idea that many of you are writing blogs, just finding you is tricky but ill persevere.

This thing like you forget to breathe sounds like autonomic dysfunction, where the nerves controlling your breathing apparatus, regulates your heart beat, etc don't work entirely as they should. Apparently a byproduct of lupus. Do you also have trouble swallowing sometimes? But instead of guessing and worry yourself silly, lets see what the GP has to say, it might not be anything drastic.

Oh dear, I really do sympathise!!!

I have awful problems breathing since being admitted in January 2011 with pneumonia. I have been on seretide inhaler and tiotropium inhalers ever since, but sometimes these dont help.

I also 'forget how to swallow' very frequently and it does cause distress. Sometimes these episodes of forgetting can last for hours, that in turn makes me panick, which effects my breathing which then raises my heart rate.

I have very high blood pressure anyway even taking 3 different bp tablets so obviously this doenst help at all.

I havnt told any of my consultants yet as it just seems that every time i see them I have a newer and bigger list of things wrong with me :(

Hi Jacqueline,

I dont have this it must very frightening for you and worrying this illness that we dont understand throws up all sorts of things though I do have asthma quite badly .

I hope you answers soon Im lucky in that I have a good Dr who understand lupus and give me time to say whats really going on for me and how it feels.

I do hope you get the answers you need soon will be thinking of you

Good luck Judith

Goodness it's worrying that it takes so long to get results. I have what feels like rapid heart beat and feeling unwell it doesn't last long and mainly seems to be when I fall to sleep so hence it stops me sleeping. I feel angry and short tempered I haven't been to the doctors about it for a long while I have in the past said it is the menopause. Who know anymore. I hope you get some good positive help. Xx

Hi, thanks for all your replies and advice. I don't think i have the allergic pneumonia as my symptoms don't seem to fit. It mentioned feeling ill and achy which i don't get. What purpletop mentioned about being a autonomic dysfunction sounds more true to what i am experiencing. I do get sleep apnea and this is similar but happening while i am awake...and often, almost constant at times. I also have problems swallowing which was one of my first symptoms before being diagnosed with Lupus at the age of 19. I know there is some kind of apnea that happens when your awake but have forgotten the name...i will look it up.

Mandie, i have very similar symptoms to you and it is awful. Don't be afraid to tell your doctor. I know what you mean about having so many things wrong and not wanting to mention it..i have that problems to a degree, but it is quite important to mention it...even if they can't do anything. I think it's something to do with the muscles. My mum couldn't swallow at all with her immune disorder...dermamyositis and needed high doses of steroids to get things working again. She had to have all her food blended. She was taken into hospital and treated.

Wood i have been thinking maybe mine is asthma, and if i don't get any answers to my breathing problems i am going to ask to try some inhalers. One woman on facebook with asthma told me to breath into a paper bag, she told me it always works for her asthma so i need to get myself a paper bag...i should get one tomorrow with my medicine.

Gilly it might be worth getting your heart checked especially if it is happening while you are at the doctors. I thought mine were just benign palpitations but mentioned it anyway...i had gone for another reason, and was shocked when he sent me straight to emergency and it turned out to be atrial fibrillation. I read that it can happen with Lupus...also many other heart problems.

I looked on a natural remedy site last night called earth clinic and a woman with copd and lung cancer recommended a spoonful of coconut oil in a cup of warm herbal tea or just tea, and she said it almost immediately helped with her breathing and opened he sinuses. She said she said she breaths much easier now. I happened to have a jar of pure cocnut oil so tried it as i was starting to feel breathless again and it did help quite a bit and i got a good night's sleep for a change. I have also been having regular drinks throughout the day. She also mentioned it makes your skin lovely too, so it might be worth trying . Earth clinic is one of my favourite sites. It has remedies for just about everything.

I will let you all know the results when i get them. Thanks again. I have really appreciated getting some feedback. Lupus can have such scary manifestations at times. I do have sjogrens, reynauds, auto immune hepatitis as well as fibromyalgia so there is a lot going on. I hope you all are having a good day, and hopefully a good week ahead. Love and hugs xx

Hi Jacqueline. I have the same symptoms almost daily now and the only way to stop me taking panic attacks is to sit and rest. I have lupus for 17 years and will be 60 next March. My breathing has got a lot worse this past 2 years and all the scans and tests I have had are clear. I have been on 15mg prednisilone for 2 years now and have 2 fractured vertebrae also have osteoporosis and rheumatoid arthritis. The shortness of breath stops me doing most of the things I enjoy. I am having rituximab infusion in 2 weeks time and I can only hop it will give me some relief. Good luck Jacqueline.

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