[MichelleAnn]

I have been short of breath for some time. Its become worse and now my friends and kids notice how I run out of breath when I do anything and when Im trying to speak a sentence. I go for a pulmonary function test tomorrow. Does anyone else have this? I feel like I dont get enough air in my lungs. I can take a deep breath and it seems deep. I dont wheeze. I just run out of air. My chest feels like a brick sits ontop. I dont feel any sharp pains just a burning feeling like a dry feeling inside my lungs. I can feel the air inside them. Ive tried a humidifier and that did not help. Im exhausted all the time. Takes too much energy to even shower then I have to blow dry my hair. I was just wondering what this might be and appreciate any ideas.
:dog:

 

[Katharine]

Hello MichelleAnn

I too have quite a few respiratory problems so know exactly what you are talking about.

There could be several reasons for this and you are doing the right thing in getting it looked into. The pulmonary function test is really a very first step and I would want you to not "stop" there. I don't know if these tests have been asked for by your GP or by a lung specialist... Usually an asthma provocation test (to ensure it is not asthma) and a CAT scan would also be asked for. An x-ray is NOT sufficient to show up many lung problems associated with autoimmune disorders.

Lung problems are relatively common in SLE and some of the overlap diseases that we may have. It is important to determine whether those problems are truly harmful or if it is "just" a side effect of muscle weakness (which can extend to the muscles around the lungs making breathing more difficult). Muscle weakness can have various causes including the disease itself or some of the medication we take. Obviously, even if it is "just" a muscle weakness problem, you may still need some treatment for it but that treatment may include things like physio to try and keep your muscles more active etc.

Do let us know how you get on with your tests. Breathing problems can be very scary and any of us here who have had them will be thinking of you and hoping that it is nothing too serious.

Katharine

 

[lin]

Hi michelle ann, i know its the pits isnt it not to get a proper breath,
i go on ok at times then its back again,

i cant walk far without stopping, its terrible trying to walk up a hill.
i hope your test help, try also deep breathing, slowly. may help

good luck take care

Lin xx

 

[Raglet]

if you are experiencing air hunger then that can be a symptom of chronic hyperventilation. If we even put in one extra breath per minute, that can upset the oxygen CO2 ration in the blood, and set up with air hunger/can't get enough air thing.

No idea if this is what is happening to you, but if it is they you need to learn to breathe properly to avoid this. If you have chronic hyperventilation, then deep breathing will just make it worse although it will seem to you be be what you need.

Just to be clear here, I am not talking about the sort of acute need to breathe into a paper bag sort of hyperventilation, there is also a chronic form. I tend to overbreathe when I am on high doses of pred which is why I know about it, it is very uncomfortable.

hth

raglet

 

[Maia]

If problems show up on the pulmonary function tests, then it becomes very important to get an xray or CT scan to look into it further. There are quite literally a ton of possibilities for this. What are your other symptoms again - do you also get night sweats?

 

[nicky00]

Before diagnosis I did get breathing probs which became better after medication.
I was quite aneamic so that I thought was the reason.

I have to say that I still can become quite breathless from time to time.Whilst stress originally used to expose the breathlesssness i.e. if I was trying to express a point I was passionate about.

I still get breathless for seemingly no reason.

Looking at your post I would say that your breathlessness if very different to mine.
I know my symptom is likely to be to do with lupus but yours sounds like its a great idea to take on advise already given here as it sounds more symptomatic.

Nicky

 

[jltntl]

Hi MicheleAnn
This sounds like a Hashimoto's (autoimmune thyroiditis) hypothyroid symptom. I used to get the shortness of breath thing, especially after a conversation. I also got the feeling of weight on my chest....I used to liken it to an elephant resting its foot on my chest.

Finally I got a diagnosis of Hashimoto's and after time on thyroid meds this has gone. But I had it for years and years before I was diagnosed.

...Julia

 

[MichelleAnn]

I had my pulmonary function tests yesterday. They were abnormal... very low flow volumes inhaled and exhaled for my age, I am 43 .... After the albuterol nebulizer treatment my breathing increased 30% one way 100% another, I forget which way, the technician said anything more than 12% increase the one way is enough to say I will need inhalers. I have to wait until my doctors appointment next Thursday to see if my doctor will run further tests or just prescribe inhalers. Im hoping I can at least get a catscan or something of the lungs just to make sure its only asthma and not something else going on in the lungs. I dont wheeze Im just tight or chest pain heaviness and very short of breath. I have a Rheumy appointment in 3 weeks I can discuss what her thoughts are. I did think it might be my thyroid but the TSH they did was normal so he said not my thyroid. My sed rate was just above normal but not real high. My other tests were fine. I was tested for Hasmottos 5 years ago it was negative. I do get night sweats but you can get them with Lupus Ive read. Ive been more brain fogged this last week too. Its getting that time of year where a lupus flare usually follows in October into November. Ive not had a good summer and Ive not felt well between flare ups. More exhausted too! Im so sick of the steroids, I have 15 pounds to still lose from the last steroid dose and the older I get the harder it is. My mom passed away from autoimmune lung fibrosis 19 months ago at age of 59 her cousin a year ago age 60 to autoimmune Psoriasis that effected her lungs and fluid, joints, etc. I guess that is why I am a little concerned. They both had asthma. My daughter has asthma. I guess that runs in my family too. I used my daughters inhalers lastnight and it did help. Its weird how I forgot what it was like to take deep breaths. I felt much better. I appreciate all the responses. You are all great!! :wink2:

 

[Katharine]

Hi again,

Well, I'm glad you had all those tests done. It sounds like they're being thorough. Of course, it isn't great that you have that much reduction but at least they should be able to give you some relief now.

For my part those tests revealed that I didn't have asthma at all and the problems are caused by possible Interstitial Lung Disease (but if it is that it hasn't done any damage yet) or simply the muscle weakness thing. Whichever it is, for me, it means staying on prednisolone longterm as that immediately improved my problems.

good luck for the future,
Katharine

 

[peonyprincess]

MichelleAnn,

I've been thru those PFT's and I have flunked every one. I have one every three months. I have gone from inhalers, to different inhalers to oxygen at 4L/NC 24/7. I had a period of shortness of breath. My Rheumy did some blood gases on me and mine were extremely bad and sent me to ER. The ER doc said I was fine. I finally met my limit and completely went off on him. I was crying and telling him what I thought and finally asked if he called my primary yet. Nope was his answer. Told him to call and he said that my primary wouldn't do anything anyway. Asked him if he looked at my blood gases yet. He told me yeah but that was probably my normal. So i informed him that my body had compensated long enough and it was tired hence my shortness of breath, chest pain and bad labs and that I wanted to be admitted and if he sent me home, it was his license not mine. Guess what, got admitted. My doc came in, referred me to my Pulmonolgist and now I am on continuous O2 feeling better than I ever did. I had NO IDEA that I was that sick.

Now, why did I go into such detail? Well, its like this.....

1) ALWAYS be involved in your health care and do not let anyone push you around. You know your body better than anyone else and they need to listen to YOU!

2) When you start having gasping speech, and are constantly tired, etc it is time to get checked out. When you see your lung specialist, insist that you get some blood gases drawn. They will at least give everyone a baseline, just in case. Your body really does know how to take care of you....to a point. If your body has a decrease of oxygen intake start to occur and it is slow, your body will more than likely compensate to keep your levels up...ie....sleep more, no energy, etc. Just because your body is helping you doesn't mean that it will do it forever. It like us gets tired and quits and then you are in serious trouble and chances are great that you will end up with a tube in your throat or something worse. Again, pay attention to your body. Another thought would be to see if he thinks you need a home nebulizer for those times that the inhaler just doesn't cut it.

Always pay attention to your body, I cannot stress that enough. Do not let someone bully you around. And when you start to experience changes, don't wait, call your doc right away and take the meds.

Anyway Michelle, didn't mean to babble on this long. Hope all is going well for you and hope that the inhalers continue to work for you.

Nancy

 

[Raglet]

great that you are on the road to figuring out what is going on. i have had asthma since childhood so have been puffing away on inhalers since then.

best of luck with it all

raglet

 

[MichelleAnn]

Thanks Nancy and everyone. Im not even scheduled to see the doctor until this Thursday. Then he is to prescribe inhalers but I couldnt wait so Ive been using my daughters. All I know is they do not last 4 hours. I have to use about every 2 hours or more. The pulmonary technician is the one who told me my values, they read very low for my age and when they increase as much as mine did after a nebulizer treatment, the rule of thumb is inhalers, asthma and inflammation. My O2 levels were 97 and good, my body does compensate. Ive been more exhausted since this started basically all summer. I did not have a blood gas drawn. I even complained of more stomach problems with my gastroparesis, but after using the inhaler my stomach and chest has much less pressure, tightness, I can tolerate it. I guess I did not realized it was my lungs making me feel so poorly. But just the inhaler is not working well so I assume I will be on more than one. It was my friends and kids who kept telling me Im out of breath and could not talk to finish sentences, I ran out of air. I never noticed wheezing just tightness or heaviness on my breast bone, an ache in my lower lungs I thought was my stomach acting up. I would like a catscan to just check the lungs to make sure. You know how medical care is today so who knows, I will ask my doctor for it. Thank You, Thank You!!