shortness of breath anyone else?

[lymeabean]

Hi all,

I've been lurking for a while and have never posted.  Today i finally decided to post this question.  I have a dx of sjs and seem to have all the sicca stuff but what threw my rheumy off was that my most disabling symptom is shortness of breath.  I seem to have about two weeks out of each month when I have trouble breathing and my heart races.  Then I seem to improve and always think okay it won't happen again cause they can't seem to find a reason for it.  I had a high res ct scan the other day that i really thought would show some inflamation in the lungs but from what the nurse said it said no evidence of interstitial lung disease.  I'm wondering if anyone else has experienced this kind of symptom.  I will be breathing but i feel like i'm not getting as much air as i used to.  My brain gets foggy and i feel weak...putting o2 on helps but it seems that my pulse ox is always okay even without the o2 when i am struggling..so doctors look at me funny when i say I've used o2 to help get me through the shortnes of breath.  i did have a pulmonary function test that showed some diffusion problems so at least i've got something to show.  Anyone else experienced this?  Especially anyone else experienced it where it seems very cyclical?

Thanks for reading and i'm sorry i was so long winded.  Thanks for all i have learned from all of your posts. 

-Dawn
CIDP, sjogrens, lyme

[Scottietottie]

Hi Dawn 

Welcome to Sjogren's world.  I haven't experienced the shortness of breath that you describe but a couple of times I've had 3 to 4 month episodes of feeling I was having to take extra big breaths to get the air I needed. Nothing showed up on x-rays and pulmonary function seemed fine.

Both episodes turned out to have different causes in my case. The first episode was eventually pinned down to what my doc said was 'granular thrush', which seemed to go from the back of throat on down. Thrush medication cleared it (although I didn't know I had it) and breathing returned to normal.

The second episode was due to acid reflux and acid ending up in the upper respiratory tract. Additional meds for GERD cleared that up.

I'll be interested to see what other replies you get as I know this is a topic which has come up before.

Take care - scottie 

[Linda196]

Hi Dawn, welcome to Sjogren's World.

The breathing problems (smothery feeling?) could be a result of the dryness on the tissue, which might limit the  transfer of air...think of how much easier it is to soak up fluid in an already damp sponge instead of a completely dry one. Remember that's just a guess, and the whole situation has to be further investigated by your doctor. Have you seen a pulmonologist? At least you've ruled out any interstitial lung disease, which must be a relief (other than the fact that it still leaves you wondering).

The cyclic nature may have something to do with hormone levels. Our whole body is dependant on a balance between all the hormones and an increase or decrease in any of them, based on normal fluctuation, could be enough to throw off that balance and make your symptoms more noticeable.

[coopwall]

Hi all you breathers,
I thought I'd post with the results of my Dr. visit last Mond.  AFter a Sinus CT Scan, a Spirometry TEst, and blood work,

my doc says I may go off Nasonex, but must continue on Symbi-Cort Inhaler which I've been on for one year.  I have asthma now.

I'm also recently taking 5mg of Singular which help a lot (esp. to keep nose open at night.)  I will work up to 10 mg.  in the future. 

So that's my status now.  This all started a year ago with Broncospasms.  Doc still says this is not a result of SJS.  (When I have to take 2400 mg or more of Guafenisen daily to be able to loosen my chest and blow my nose, then I think that means SJS is involved.  It certainly aggravates any breathing issues.)

Good luck to all.

coopwall

[DragonflyC]

Did your doctor just tell you that you have asthma because he/she couldn't find another reason for your breathing issues?  If so, then it might not be asthma after all; it wasn't for me.  Turns out that it was dyspnea (air hunger), a pretty common symptom of several autoimmune diseases. 

My doc put me on Advair, which worked great of course, because it's a corticosteroid--exactly what one would use to treat an autoimmune condition.   I'm off it now, because breathing is not a problem at this point now that my autoimmune conditions are better under control.

My doctor was confident that my air hunger was unrelated to my autoimmune conditions.  When I found out about dyspnea on my own, I shared my resources with him, and he said, "Hmmm.  That's interesting.  I hadn't thought about that."  Later, when I finally saw a rheumatologist, he was not surprised to hear about the air hunger or about the two bouts of pleurisy that I went through.

"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)

Definition of dyspnea: http://www.sjogrens.org/home/about-sjogrens-syndrome/glossary

[coopwall]

Dear Dragonfly:
Thanks!  I'll check out Dyspnea.  How did you get your SJS and AI conditionsunder control?
Coopwall

[DragonflyC]

I think, for me, it was that my body was freaking out because of multiple problems.  When I started taking thyroid replacement meds for my Hashimoto's, a lot of things got better for me.  Over the next year or so, my lung issues became less and less of an issue.  I believe that the air hunger, however, was related to Sjogren's (I'd tested positive but hadn't been diagnosed at the time), especially because of the pleurisy that followed.  I think that my body was so out of wack with all of these problems that they compounded each other.  Getting one under control brought the others under better control. 

Since then, my Sjogren's and mixed connective tissue disease have become much bigger issues with some lung problems during my flares.  On the whole, plaquenil has helped.  I had to take prednisone for a few weeks, and I have to take evoxac 2-3 times a day.  I find that if I'm well rested and not having a flare, my lungs aren't much of an issue.

[forest]

Hi lymeabean...

I have shortness of breath especially when going up stairs. It seemed to get better after I started my thyroid hormone, but eventually it came back again. I sigh quite often, and my wife commented on it one day thinking that I was frustrated with something. That is when I realized that my body was simply trying to  get some air! I am an ex-smoker which doesn't help. If I didn't quit smoking, I would have been in much worse condition right now.

forest

[JannaLee]

I'm curious about this.

I have started to sigh a lot.  Probably several times an hour sometimes.

The air hunger thing is intriguing.  Dawn, do you remember if your problem crept up on you?  Did you ever used to sigh a lot?

I'm sorry for Lyme on top of everything else!

Janna