Update - Shortness of breath

[sunflower]

Hello friends,

Your support and counsel are a lifeline to me, thank you.  I took your advice and saw a doctor about my shortness of breath.  Test results are FINE, thankfully.  My symptoms and lung performance in the office directed him to chest x-ray and tests for heart failure.  As I said, x-ray and labs are normal and not predictive for heart failure either.  My discomfort at night has subsided the past few nights so I'm hoping I'm past that, at least for now.  (He suggested using an additional pillow and it helped, although that also suggests heart failure.)

So - now what?  Could this be/have been due to a lung problem instead?  As I said, I didn't perform to his satisfaction when I expelled air as quickly and forcefully as I could (hand-held tube; a Forced vital capacity (FVC test?).  BTW, I have had radiation for breast ca. 

Does the dyspnea tend to come and go like many of the other SJS symptoms?  I will persist in my efforts to get appointments with more specialists.

[bartolo]

A lung disease that would be so severe to cause shortness of breath would be very likely obvious to the doctor that examined you.

Do you have shortness of breath at rest? Any pain during deep breathing?

[sunflower]

Thanks, Bartolo.  It always happens at rest, either sitting or in bed.  Recently it's been nightly in bed.  Never any pain or tightness.  It happens when I exhale.  I can't exhale completely or I feel like I'm suffocating.  So my breathing is shallower and it prevents me from sleeping.  The first time it happened was the worst.  I was sitting and I needed to gasp for a few minutes to get enough air. 

[Kathy57]

Sunflower,

Have they done any lab work on you, recently?  I just read somewhere today that metabolic acidosis can cause hyperventilation.  It can be caused by inflammation of the kidneys?  I'm not a Docter but I see you have some renal disease in your signature.

I'm probably grasping for straws here,  but maybe it is worth a shot.

Hope you get to the bottom of this and find relief soon.

Kathy

[sunflower]

Kathy, thanks.  The labs done last week were Hematology Profile, BNP and CRP (high sensitivity).  My lymph count was slightly above range (due to the CLL, nothing unusual). 

My last General Chemistry (Nov/15) showed Creatinine of 102 and GFR of 48.  The rest of the counts were normal.  The CKD has been considered stable for years. 

About metabolic acidosis, I read this:  https://www.nlm.nih.gov/medlineplus/ency/article/001181.htm
and  https://www.nlm.nih.gov/medlineplus/ency/article/000493.htm   
Looking into Distal renal tubular acidosis and Proximal renal tubular acidosis, I noticed both mention SJS.
So it's interesting, but I would think my CKD values would show some change.  Unless I should have General Chemistry done again.

[irish]

I think it is time for you to find a pulmonologist or lung specialist. Lung issues can be extremely tricky and just the one test you had would not be enough to make a diagnosis.

Sjogrens can cause lung issues and there can be other lung issues that can be a result of some other issues. Do not panic though. The other thing to keep in mind is that people with Sjogrens have very thick mucus and this means that the mucus secreted by the lungs is also thick. I can feel the wheeze that comes when I have thick mucus. It is caused by the mucus being so sticky that the walls of the pipes in the lungs literally slightly stick as they will touch when I breath.

It may be that when you are tired at night or lay down the tissues in your lungs are more prone to have problems with the mucus. We always forget that we have Sjogrens which is also a connective tissue disease. Connective tissue diseases can cause the tissues to get soft and collapse to some extent. Connective tissue diseases involve the product in the skin that is basically the glue that holds the tissues together.

It is necessary to get diagnosed and treated to protect the lung tissues from further damage. Hope you can find a doctor. You might try finding an internist first if you can't find a pulmonary doc.Good luck. Irish

[Seeker]

Howdy Sunflower, sorry you are having such a rough time of it.  I came in late on this coversation, so if my suggestions have already been looked into, sorry for the rerun.  Have you been tested for Sleep Apnea?  There is also a test a ENT can do.  They put you to sleep for a short period of time.  Then take a scope to see if there are any hidden blockages in your throat.  If your Thyroid is not working well, you can also have shortness of breath issues. 

In my own case, the ENT (Ear Nose and Throat Specialist) found three hidden blockages.  I won't know until next month what my options are.  I hope you get the answers you need soon.

Seeker

[sunflower]

Thank you, Irish and Seeker.  These are things I hadn't thought of and interesting.  Regarding Sleep Apnea, however - I had a sleep study about 3 years go - for insomnia.  I know what it's like to wake up feeling like I've stopped breathing.  That's happened only a few times and not recently.  This is completely different.  It keeps me awake in order to get enough air.  And it comes and goes.  The past 3-4  nights have been fine.  It's hard to ask for specialists when the symptoms disappear.  SJS is SO unpredictable!  But these are good suggestions and I will keep them handy.

Thank you!

[Synnove]

Hello Sunflower.
I am so sorry to hear about your breathing problem and chest problems.  I can really understand how it must feel for you because I have been through something similar for the past few years with chest and breathing discomfort without really getting a diagnosis.

I agree with Irish, it is important to get a good pulmonologist. 

As for me, I kept going to doctors complaining of chest tightness.  I had CT scans, and all sorts of bloodwork for autoimmune disorders, CXR, and Pulmonary Function Test and at last ended up with 2 Broncosopies,  --- They found 2 small nodules on lungs, diagnosed with mild small airway obstruction.  The last bronchoscopy showed a weblike stenosis of  2 anterior segments both left and right.  (So I guess this in it's self could be something related to autoimmune issues, but they never told me).     

This is just a suggestion Sunflower.  I have been feeling much the same as you.  The shortness comes from nowhere, at rest.

I think the chest thightness and shortness  of breath are related to Sjogrens.

I find  taking a hot shower creating a lot of steam helps "open up" my chest.

My doctor, even the pulmonologist, could not relate to this, when I explained my chest tightness got better with a hot shower or sucking on a cough drop candy.  Thinking of it now, I think this would have put up the red flag saying Sjogrens.?
   
Well, this was just some thoughs regarding shortness of breath, chest pain and sjogrens that I can relate to.

Good luck to you

Synnove   

[cccourt1942]

Hi Sun,
     My take on your description is altogether different than what has been offered.  As usual, I can respond to what happened to me.  At least two years prior to my diagnosis, I would wake up coughing.  I would be coughing...or trying to clear my throat---or so I thought.  After dx and starting on pilocarpine, it virtually stopped.  Though I drank water  like at 10, 2, and 4 (joke if you are old enough). 

     Anyway--I realized I was gasping for breath--and likely gagging.  It didn't stop nightly as I was collecting thick phlegm which bothered me in the daytime too.  My GP solved that prob by advising Mucinex.  It was miraculous.  So...I tried to take Mucinex (usually cut in half) nightly until I acclimated myself to the pilo.  Before the dx and pilo, my oral cavity and throat were so dry I was unable autonomically swallow--thus would choke. 

        I had been dxed Mild Reactive Airway Disease..and had inhalers--and the rescue inhaler on hand as well...but....I didn't realize what was happening.  I am suggesting this as I see you are recently dxed, and you don't list a medication for dry mouth.  Of course, you may not have experienced that symptom at this point.  In that case, disregard all this. 

        Another thing I discovered within a year and a half after SjS dx  was a complete separate condition which has nothing to do with SjS was causing me to wake up in the night.  The only difference between before dx and after is the waking up coughing, choking had ceased.  I will pm you if you want to know as I was directed not to discuss things on the board non SjS related.

       Whatever your etiology I hope you find a dx and resolution soon.  It's scary.

c3

[kimberly64]

I agree with CCCcourt and being worried that it is a life sentence of lung problems because of Sjogrens which is rare in most cases is adding to the anxiety creating more chest tightness!
Kimberly

[sunflower]

Thanks all!  I have a more to add to my long list of questions and requests for my next GP appointment.  I see a lot of tests and appointments on the horizon (getting started with a specialist in a couple of weeks).  I went through the worst sicca symptoms in summer and fall so yes, been there done that.  (Dry eyes for 10+ years.)  That included the dry mouth...throat...coughing, but now my mouth has improved.  For now, I can get along ok at night without xylimelts.  I do have an eternal frog in my throat and I'm sure it's from sticky phlegm. 

The spells of not being able to exhale completely without feeling like I'm suffocating is just the latest in this (not so) merry-go-round-of-a Sjogren's journey.  (I don't have chest tightness or pain.)  For the past year, it's been something new every month.   

There is a lot of help in your answers and I thank you.  I'll see my wonderful pharmacist about Mucinex and I will add "pulmonologist" to my list of specialists I want to see.  I wish I could see them all quickly and get help but that isn't under my control.  Right now I am so tired and stiff and sore I've just had a little cry. 

Hugs to all of you.

[Navigator]

Oh I wish you well. It is a little past ten and I will  be up awhile because I am having trouble breathing and sleeping.  It only happens at night and it is just as you say. It feels like not exhaling and inhaling fully.   I seem to sleep well every other night ...I get so tired after a lost night that the next night I have no issues.  Not a long term way to live but that is what it is.

[sunflower]

I'm so sorry you have this too.  Yes, maybe I don't have issues some nights because I'm so tired.    I had a very tiring day yesterday and I know I overdid it.  Today was quieter and I'll have to take it easy tomorrow too.  Thank you, Navigator.  It's good to remember I'm not alone.  Do you take any meds or treatments for this?

[Navigator]

It was a lot worse and then the doctor gave me Breo . That got me over the hump but my insurance won?t cover it.  So I have an inhaler.  It is very odd. It doesn?t feel like my airways are constricted.