Author Topic: Shortness of breath  (Read 4558 times)


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Shortness of breath
« on: November 05, 2010, 08:36:02 PM »
Hi everyone, I've been having episodes of shortness of breath on and off for over a month. It used to only be occasionally but now I'm lucky if I can skip a day without having it. I can be busy or relaxing when it occurs, doesn't matter. When it happens I just feel so tired. Sometimes i have chest pain with it but I get that a lot so its not really abnormal for me.

I went to my GP today, chest X-ray was clear. Dr says if it keeps up I'll get a pulmonary function test but today he just said he had no idea and offered no other tests.  I called my rheumy and he said SJS doesn't cause chest pain (right!) and that shortness of breath only comes from longterm disease. Does anyone have an idea of what this could be?  I'm 33 years old and have only been seriously suffering for about a year, but I was sick 6 yrs before being dx. To me at least, 33 seems young to be having random shortness of breath, so I'm wondering if it's the SJS after all. Is this a common thing? I'm worried that it could be here to stay and it is interfering with my life, not to mention scary!

I've had bloodwork done for my chest pain and it didn't show anything, and im on prednisone and plaquenil. I'm not feeling well now, having a bad arthritis flare with inflammation and fatigue, but I wasn't flaring when it first started. Thanks for any input. If I could figure out what it may be I'll suggest it to the doctor.


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Re: Shortness of breath
« Reply #1 on: November 05, 2010, 10:09:27 PM »
Some people with Sjogrens end up with the lungs infiltrated just as the saliva and tear glands are. Personally I don't put stock in time estimates because I've had sicca symptoms for decades and when I was a kid they just told me they were allergies and I'd grow out of them. SS doesn't know or care when the doctors finally recognize it.

Xrays are useless for subtle things.

Personally I spent about $35 on Ebay buying a fingertip pulse oximeter. This allows me to check my blood oxygen level at any time, sitting, walking, whatever. It lets me know whether my symptoms are due to lack of oxygen. Thus far they aren't.

Pulmonary tests can often pick up if your oxygen is fine but your body is working hard to compensate for something such as capacity changes.

CT scans highlight inflammation in bright colors. Inflammation such as SS infiltrates can act similarly to bronchitis and not show up on xray. CTs will also often find early tumors that are missed by other methods.

In many AI diseases a spleen or liver can get enlarged and crowd the lungs. Ultrasounds often find that.

Thyroid issues can often cause weakness and shortness of breath. Your doctor can tell you whether you've had a thyroid panel done. Many thyroid issues are autoimmune and hitchhike along with other AI diseases. Hashimoto's thyroiditis is a common with Sjogren's.

Deconditioning from lack of activty can do it surprisingly fast - don't forget to exercise while you still can!

One last thing, try to notice whether being warm (overdressed, ambient temperature, exercise) triggers weakness and sob. If so this can be a clue neurological processes are involved. My own shortness of breath usually corresponds with overheating or flares.

Just a stream of conciousness, of the top of my head list of ideas. If GP or rheumy don't give satisfactory answers see a pulmy.

Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.


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Re: Shortness of breath
« Reply #2 on: November 06, 2010, 01:36:43 AM »
I was having this problem for 6 months I would say on and off. I had pressure in my chest but also like I was gasping to breath. It would cause some dizzy feelings. I have a cough that doctors ask me if I smoke and cough flem. Sorry to be gross. I have never smoked or been around smokers. I still have the congestion cough but the gasping has got better along with the pressure. I did not do anything different though. A few of the doctors tried nose spray and some allergy med which to me was out of left field and did not help. Also was tested for asma which I don't have. Also ekgs I had which were fine. Have you had any testing I stated? You stated those meds but have you changed doses or recently started/stopped any?
With my conditions my doctors don't seem to make connections either or with new symptoms. It is just a fluke they say. I am 32 and it is just to many things happening to be a fluke at this point. Many doctors don't want to look out of their speciality so it is harder to make connections.
I hope you feel better.


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Re: Shortness of breath
« Reply #3 on: November 06, 2010, 05:06:16 AM »
Sounds like both Kerrikins and GCJ would benefit from a CT. 

Anyone who has shortness of breath and chest pain, should be evaluated further...much more than blood work and a chest xray. 

SJS doesn't typically cause chest pain (without an underlining cause). But it can help create some of the underlining causes, so it shouldn't be ingnored.

As GPHX touched on, there is interstitial lung disease that can occur, but the CT would rule out or confirm it.     

Please follow-up with either a pulmonologist or cardiologist to rule out any serious. 
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran


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Re: Shortness of breath
« Reply #4 on: November 06, 2010, 07:18:24 AM »
hi, kerrikins and everyone else.

when they did the bloodwork, did they check for chemistry that would indicate clotting? i'm guessing they did, but it's an important thing that a lot of doctors/ERs still miss.

i ask because about 10 years ago, i had shortness of breath and chest pain that i dismissed as nothing. i was 23 and in otherwise good health. and i've always been prone to random chest pain -still unexplained- so i thought it was just a really bad episode of the usual. EKG and xrays were normal, as was my pulse oxygen levels. at the time, blood tests weren't very good with regard to detecting clots so the ER do suggested i have a lung scan. just in case.  he said he was probably just being overcautious but there was a chance that it could be a clot in my lungs. it turned out he was right: i had multiple blood clots in my lungs.

i learned later that the clots can dislodge from the lungs and float around in the blood stream, only to block other vessels or return to the lungs. i know someone else who had this happen and it took a bit for her to get diagnosed because the lung scans kept coming up clear.

also, i know sometimes AI disorders can cause blood to clot more readily, so it's definitely something i would pursue if i were you, if you haven't already.


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Re: Shortness of breath
« Reply #5 on: November 06, 2010, 10:13:47 AM »
Thanks so much for the input everyone!!

I have had the blood test that checks for clots. Just yesterday the GP said it was unlikely to be a clot, according to the bloodwork I had done for the chest pain a while back. I haven't changed med doses or stopped/started anything else lately. Interstitial lung disease sounds so scary, it would be just my luck to end up with something like that. I almost feel cursed lately with all of the problems imam suddenly having.

It was late when I posted last night and one possibility I forgot to mention is that I have a thyroid nodule that could maybe be blocking my air. I say "could maybe" because the surgeon and everyone else keeps saying it isn't likely. I'm getting it removed in January so I guess I'll find out for sure then. although I worry about going under general anesthesia if I have undisguised lung disease. (Me= Worry Worry). If this s.o.b. Continues I'm going to go back and get the pulmonary test. This is a simple procedure and believe it or not ordering the mouthpieces that they ran out of slipped the Dr's mind and that's the only reason I didn't get one yesterday. I'm also going to ask about a CT unless I can figure out if it's my thyroid nodule in the meantime. Does anyone know of a NON invasive test that could tell exactly what that nodule could be interfering with? I had a u/s done on it and It didn't show it doing anything even though it causes food to get stuck in my throat sometimes.

Thanks again for the ideas on what this can be, I'm definitely goon to look into it more!


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Re: Shortness of breath
« Reply #6 on: November 06, 2010, 10:25:39 AM »
Being hypothyroid can slow your metabolism so much that you don't take enough breaths to get enough oxygen. Time your breathing while at rest---I think I read that 20 per minute is normal, but people who are hypo it can go a lot lower--10-12. Count the number of breaths for 10 seconds, then multiply by 6.



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Re: Shortness of breath
« Reply #7 on: November 06, 2010, 03:12:51 PM »
I'm shocked your gp isn't taking this more seriously. It could be pulmonary hypertension. That should be checked. I had shortness of breath dx as pluerisy which is inflammation of the lung lining. As you know sjogrens likes to swell things outta of control. I was on oxygen for 24 hours a day for a good while. Now I'm just on supplemental oxygen at night. It's important to get to the bottom of it.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD