I always thought it was long term Covid issues with my lungs. chest x-rays are always clear but yet I can feel the congestion. It probably is from the Lupus. I had to get an adjustable bed to sleep raised up. People don't understand how I can sleep for 12-14 hrs. It just requires too much effort to get out of bed and I'm retired so some days there is no reason to get out of bed.
August 10
That sounds really exhausting — dealing with worsening symptoms while feeling like nothing is being found or addressed. It's completely valid to feel frustrated, especially with a new doctor who may still be getting up to speed on your history.
With lupus, breathing problems and chest-related symptoms are actually quite Show Full Answer
That sounds really exhausting — dealing with worsening symptoms while feeling like nothing is being found or addressed. It's completely valid to feel frustrated, especially with a new doctor who may still be getting up to speed on your history.
With lupus, breathing problems and chest-related symptoms are actually quite common and can have several causes worth exploring. Around 50% of people with lupus experience lung-related issues at some point. Some lupus-related causes of breathing difficulties and related symptoms can include:
- Pleurisy — inflammation of the lining around the lungs, which can also cause chest and back pain
- Pulmonary hypertension — high blood pressure in the lung arteries
- Lung scarring — which can develop if breathing issues go untreated for a while
It's worth specifically asking your new doctor about these possibilities if they haven't been ruled out yet. A MyLupusTeam member shared a similar experience — their shortness of breath was being dismissed as "just lupus" until they pushed for referrals to a pulmonologist and cardiologist. Don't be afraid to advocate for yourself and ask for specialist referrals if you feel something more is going on.
You should seek immediate emergency care if your breathing worsens suddenly and is accompanied by any of these:
- Chest pain
- Blue lips or nails
- Lightheadedness or fainting
- Confusion
- Leg pain or swelling
- Nausea or vomiting
August 10
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