Hi I know I’m in the wrong place but does anyone else have a problem with syncope??
I have SLE and pulmonary fibrosis and now syncope.
Cindy
TJ here. Not minimizing anything but Pulmonary fibrosis is found at one time or another in 90% of SLE patients. Actually there are 5 different lung conditions found: pleuritis, acute lupus pneumonitis, chronic (fibrotic) lupus pneumonitis, pulmonary hypertension, and “shrinking lung” syndrome.
Syncope is a medical term for fainting. Most commonly with Lupus it is Gowers syndrome which consists of palpitation, chest pain, respiratory difficulties, and disturbances in gastric motility; once attributed to vagal stimulation, now considered psychogenic or stress reaction. There are other causes which I’m sure your doc can help ferret out and our members can certainly add their experiences. Good luck!
Oh, and I moved your post to this category and gave it its own thread to see if we can get more responses 
Rheumatologist didn’t think the fainting was due to Lupus. I have scarring at the top of my lungs which “won’t get better” according to my pulmonologist and lung scan.
I can see the stress reaction . My hubby has had one coronary arrest and one heart attack in the past 6 weeks. So stress can be my issue.
Thanks for responding. I’m not too good with computers…
Hi,
Sorry that your dealing with syncope! I have years of experience with syncope! I was first diagnosis with Postural Tachycardia Syndrome as the cause of my syncope which is a
Autonomic Dysfunction! Recently, they have discovered that Pots is a symptom of many autoimmune diseases. The nerve damage for the autoimmune Disorder causes the Autonomic dysfunction and POTS! They symptoms that you describe above is all part of dysautonomia.
I am treated by a Neurologist at Cleveland Clinic that works with these issues. The most common diagnosis that is related with the syncope is Sjogrens, Antiphosolipid syndrome, Lupus, RA, celiac disease and a few others. I will give you a link to click on and maybe this will help you find some answers! My pots most often comes with raynauds, brain fog, abdominal bloating/cramping, diarrhea, constipation, dry mouth, low blood pressures or high blood pressures, temperature change intolerance, dizziness, shakiness, sweating too much or none at all and syncope! Its very difficult when my lupus flairs cause these symptoms. They can be permanently a problem if actual nerve damage has happened or periodic if they are caused by the inflammation. Click on the link below!
http://www.dysautonomiainternational.org/page.php?ID=150
you may have to type it in???
There is two places doing studies on these problems and there is actually 17 newly found antibodies that the public will be able to be tested for just as there is ANA’s DNA’s hopefully by this July. They are in the second stage! Cleveland Clinic Neurology/Cardiology is doing the Testing for Pots and Autonomic Dysfunction and they are wonderful to work with you! I am seeing a DR Shields in Neurology Department. I see Dr Jaeger in the Cardiology Department at Cleveland Clinic in Cleveland Ohio. If you would like the numbers let me know. I also know that Mayo Clinic is also doing the Testing too!
Hope this helps and don’t let them tell you that, it’s anxiety! Look up/ Autonomic Neuropathy or Autonomic Dysfunction (syncope) These are both functions that cause the autonomic nervous system (ANS) not to work! The ANS controls the body funtions that we do not consciously think about: breathing, blood pressure, digestion, temperature regulation, and more…The Autonomic neuropathy is caused by lupus! Common Symptoms are:
Postural hypotension, lightheadedness, dizziness, faiting, dimness of vision, unsteady gait, weakness
2. urinary dysfunction: frequency, excessive urinating at night, urgency, stress incontinence, retention, hesitancy
3. sexual dysfunction, vaginal dryness, decreased libido
4. Gastrointestinal dysfunction: intemittent diarrhea, constipatiiton, nausea, vomiting, fullness after eating little, loss of appetitie, slowing of gastric content, boating heartburn,
5. impaired sweating: excessive or decreased sweating
Exercise intolerance
6. Paresthesias: numbness or tingling in feet, legs, hands, arms or other body parts
Information I’ve provided is from the Health Information for patients and the community provided by my doctor at Cleveland Clinic
They do have treatments available but you will need evaluation from a neurologist or cardiologist that provides this special area of treatment!
Where: Neurologist is Dr Shields but they have a large group of doctors that works this clinic
Autonomic Lab (Neur (Main - Cuyahoga) J)
9300 Euclid Ave
CLEVELAND OH 44106
Phone:
216-■■■■■■■■
I hope this helps you! Its very frustrating by itself then to add the other lupus issues and my rheumy agrees makes it very tough!!!
Here is another listed phone number for Dr Shields! Robert W Shields; ASSESSMENT NEUR NEUROMUSCULAR Neur Neuromusc Main 216-216-■■■■■■■■
You may also contact Dr Jaeger in the Cardiology Department. He too works with these
issues that you are describing!
These are specialized areas and not all neurologist and cardiologist have the testing equipment
or specialize in this area!!
Hope this helps you out!!
5 months later and I haven’t had any fainting episodes. I had a tilt table test and I passed out. Event monitor that showed nothing. Cardiologist checked thyroid and vitamin B. All good. He finally sent me back to my PC. My PC is sending me to a nephrologist ( spelling). for acute stage 4 kidney disease. I am getting aches that I never had before. It’ so frustrating.
Cindy