Does anyone have problems breathing? I have a dysfunction with my parasympathetic system, but the focus has been mainly on my heart. I've been told it maybe because of my heart rate is high, but I don't think so. I feel it's a separate issue.
I have problems getting air anyone else? Has anyone heard about this? I've had CT Scan & chest X-rays and it didn't show anything. I don't know how else to push for in order to get an answer. I do not have asthma.
I am so glad to see someone else has this. I have the same issue and it doesn't matter what I have been doing or if I lie down or am sitting up. I have never seen it discussed very much anywhere. It is scary when it happens as you are just gasping and you are using your whole body to get the air in. People notice that you are doing it to and it is hard to exlpain. My wonderful little rheumy(he is short!) said the main thing could be pulmonary hypertension, but he didn't think I had it. I was going to see a pulmonologist after I ended up in the ER with big problems breathing and they couldn't find anything either. Because the episodes are so sporaidic I didn't see what it would show.
Yes. I have always felt like I was breathing through a straw. I don't wheeze, so they initially said it wasn't asthma. They, like with you, thought it was my heart. I do have heart problems as well, and they wanted to put me on beta blockers but I had to have an asthma test to rule out asthma first, as beta blockers will give you an asthma attack if you have asthma. However, after taking the asthma test and using a fast acting inhaler for the second part (they gave me Xopenex) they said it WAS asthma even though I don't wheeze even during an asthma attack. Being put on Advair for daily use and Xopenex for attacks has eliminated that breathing through a straw feeling. And, cleared up some of the heart issues I was having.
Sometimes, we don't present classically. Which is why so many people go undiagnosed or misdiagnosed with so many diseases and afflictions. I'm asthmatic but don't wheeze. Go figure!!! :o
Yes, I have breathing issues too but I have been diagnosed with asthma. Based on my symptoms, my pulmonologist thought I had interstitial lung disease, but my CT scan was clear.
I didn't have the wheezing while I was breathing but did develop a wheezing cough; shortness of breath (that description of breathing through a straw is a good one); dizziness and chest pain. I'm on Symbicort (which helps somewhat, but when this bottle runs out, I'm going to try Dulera) and albuterol as a rescue inhaler which helps the most.
Have they prescribed something like albuterol just to see if it helps?
Yep, when I lie on my side I feel like my heart is being crushed, like a pressure on it. It burns to take a deep breath in - almost as though I have bronchitis. My asthma is just fine and I get no relief from my inhaler so I know it isnt that, I have sticky mucous that I cant cough up, my throat and sinuses sting so I can only assume my lungs are super dry.
Sometimes my heart 'aches/stings' with every beat as though it is beating in a dry cavity - that is the only way I can explain it.
i have the Rheumy on Wed, so fingers crossed I can get some answers, but I wont hold my breath as I dont have a huge amount of confidence in the medical profession at the moment. I live in a country where the medication that can help me is not available.
You are not alone with this lung issue, there are many of us that suffer with it, my sympathies because it isnt pleasant.
I have interstitial lung disease caused by severe Sjs.
My symptoms were recurring chest pain, shortness of breath and a dry peristent cough which I had told both my Rheumy and family doctor about but neither could detect anything. I was sent for CT scans as well as Chest Xrays and even had a Echocardiogram but nothing conclusive was found.
The CT scan showed that I had some issues but I wasn't finally diagnosed until I nsisted on seeing a Respirologist who performed a bronchoscopy on me and determined that I was very ill and needed immediate treatment. I also had a staph infection in both lungs at the same time which was causing further lung distress.
If you believe you have a lung issue, I would strongly recommend that you see a qualified Respirologist or Pulmonologist for appropriate treatment.
Daisy
Having trouble feeling like I was getting enough air was my first serious symptom. My doctor thought it was asthma, and Advair did help. I later realized that it helped not b/c I have asthma, but b/c it's a corticosteroid, and of course, steroids calm AI diseases down.
You might want to check out this thread: https://sjogrensworld.org/index.php?topic=15634.msg165813#msg165813
Here's what I wrote in the discussion there:
Breathing issues such as air hunger, dry lungs, etc. can definitely be from Sjogren's. My lung issues (air hunger, an occasional wheeze, and occasional bouts of pleurisy) have all cleared up since my thyroid levels have been adjusted and my Sjogren's has been somewhat calmed by plaquenil.
Definition of dyspnea (from the Sjogren's Syndrome Foundation glossary): Air hunger resulting in labored or difficult breathing, sometimes accompanied by pain. http://www.sjogrens.org/home/about-sjogrens-syndrome/glossary
Also interesting: "A review of 343 patients with classic Sjogren's syndrome seen at the Mayo Clinic from 1967 through 1974 revealed pulmonary involvement in 31 patients (9 percent). Cough dyspnea, recurrent pneumonitis, and pleuritic pain were the primary complaints." (http://www.uptodate.com/online/content/abstract.do?topicKey=~N/6/GuLQa27_Q1N&refNum=4-11)
the summer of 2010 I had shortness of breath with everything and anything I did. When I would answer my phone people would say "you didn't need to run and pick up the phone" and I would think, oh if they only knew I just got up and walked 4 feet to answer it!!!
My chest xrays were normal.
after I started treatment with plaquenil, etc...the shortness went away.
eye2dry
I am glad to see this here! I kept telling Drs I get so exhausted just taking a shower and getting dressed "I'm out of breath and Need to relax"
My PCM sent me to an allergist \ asthma clinic. On what I thought was a good day my lung capacity was at 72. So I have a home nebulizer now. It smokes the inhalers in how much more energy I have.
Now on a second note I have been recently DX'd with asthma, but my insurance required allergy scratch testing before allowing me to see further Lung specialist. That was actually today, and low and behold out of 87 scratches I am extremely POS on 86.
I am literally allergic to the environment! (I live in the country on a farm) there is not an animal, flower, tree or stemmed veg I can touch. Nor a mite, or cleaner or dairy product I can be near.
This internal med Dr said my sed rates are way to high to be only from allergies so she thinks this is a backlash from my auto-immune, but is most DEF causing the asthma inflammation.
So I share this because its why I logged on today and then I seen this post and thought once again.... I am not alone.. I know just what there talking about!
Blessings.. 12love
I have to say if you feel in your bones that somethings not right you need to keep pushing these Dr's. I had a PFT done at one Cardiologist office and the Dr who read it said it was Asthma, mean while when they gave me the spray to open my lungs it clearly showed it didn't help, in fact it made it worse. I took that info and ran with it to a Pulmonologist at Hopkins....well it turns out I was right, I knew when I laid down and couldn't breath there was something very wrong.
He told me he thinks I might have blood clots in my lungs and they might have been there for a long time. Also he thinks my diaphragm is not working right, I have this very shallow breathing, I didn't even realize I was doing it. I had a CT scan and It only showed my lungs collapsed at the bottom when I was lying down, and the Dr said the CT scan does not pick up this type of stuff.
So now I'm on to more testing. Good luck and I hope you keep up after what you believe is the truth.
Stay Well Mary
For those of you suffering from the dry lungs make sure to find a pulmonologist and ask for a nebulizer, the drug albuterol (to help expand the airways) and also ask for a prescription for sterile sodiuim chloride (2-3 cc ampules) to mix with the albuterol in the nebulizer treatment.
This absolutely is a life saver. I was so miserable using just the albuterol as I felt like it really dried my out more. With the sodium chloride I feel so much relief. Try doing a search on this subject. I did a few months ago and almost fell over when I found info on this. Why in the world don't the docs think of ordering this for us when we complain of dry lungs.
When a sjoggie says that it hurts to breath it is very likely from a combination of spasming airway and a very, very dry airway. Irish ;D ;D
Just got back from the rheumy and he has prescribed dexamethasone for my lungs and to help the plaquenil with the pain.
So i have big hopes for it.