Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I was sent to a rheumatologist around 20 after I was diagnosed couple years before with uncontrolled HBP & stage 3 kidney disease.

A MyLupusTeam Member asked a question 💭
Manchester, CT

I was very close to being diagnosed with it & she strongly believed, had it and was told to come back during a flareup. I went through so much pain for years & kept getting dismissed by doctors never made it back to her. I’m setting up an appt again all these years later. Dr thinks I have lupus nephritis now, different dr. Never mentioned anything about lupus to him. I’ve had a rash for two years now that won’t go away. It comes back every time I have a phantom period I had a hysterectomy and I… read more

February 28
 · 
Be the first to react
MyLupusTeam

Do your symptoms sound like lupus?

Many of the symptoms you're describing align with common lupus manifestations. The butterfly rash, recurring skin rashes triggered by stress or hormonal changes, extreme fatigue, joint pain, temperature regulation issues, and Raynaud's syndrome are all frequently reported by people with Show Full Answer

Do your symptoms sound like lupus?

Many of the symptoms you're describing align with common lupus manifestations. The butterfly rash, recurring skin rashes triggered by stress or hormonal changes, extreme fatigue, joint pain, temperature regulation issues, and Raynaud's syndrome are all frequently reported by people with lupus.

Your kidney issues are particularly significant. Lupus nephritis affects 20-40% of adults with lupus and can cause high blood pressure, swelling, weight fluctuations, and foamy urine. The combination of stage 3 kidney disease, uncontrolled high blood pressure, and swelling fits this pattern.

Heart involvement is also common with lupus. About 50% of people with lupus have high blood pressure, and cardiovascular issues are serious complications. Your three leaky valves and extremely high blood pressure readings need urgent attention.

Other symptoms that match lupus include:
- Extreme fatigue that doesn't improve with rest
- Skin rashes that worsen with stress or illness
- Muscle spasms and nerve problems
- Memory issues or brain fog
- Difficulty regulating body temperature

It's really important that you follow through with that rheumatology appointment. Bring a detailed list of all your symptoms, including the timeline of when they started. Your history of being "very close" to a lupus diagnosis years ago, combined with your current symptoms, suggests this needs thorough evaluation.

A MyLupusTeam member shared a similar experience: "I was in the hospital for 3 weeks and during that time, lupus also attacked my kidneys. So the diagnosis was lupus nephritis, also with having antiphospholipid syndrome."

Your extremely high blood pressure readings are dangerous and need immediate medical attention, regardless of the lupus diagnosis. Please make sure your current doctor is aware of these numbers.

February 28

Related Questions

View All
How do I add a photo to an update?
3 Years of Lupus Nephritis Remission May Help Prevent Long-Term Kidney Damage
What I Want Others to Understand About Lupus