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.

Headache, low body temperature of 36.2°C, feeling sick/ very nervous, occipital pain, dysphagia, mostly feeling cold, bouts of involuntary

A MyLupusTeam Member asked a question 💭
Berlin Köpenick, DE

Jerking movements/seizure-like episodes, recurrent bradycardia. I'm tired of spending many nights at an ER, but I feel this is something I can't brush off, I had sun exposure, my glutenfree diet was involuntarily disrupted over a period of approximately 3 years

July 3
 · 
Reactions
MyLupusTeam

These symptoms together are genuinely concerning, and the instinct that this can't be brushed off is absolutely right. Sun exposure is a well-known lupus flare trigger, and several of these symptoms can be connected to lupus activity.

Here's what makes this combination worth urgent medical attention: - Seizure-like jerking Show Full Answer

These symptoms together are genuinely concerning, and the instinct that this can't be brushed off is absolutely right. Sun exposure is a well-known lupus flare trigger, and several of these symptoms can be connected to lupus activity.

Here's what makes this combination worth urgent medical attention: - Seizure-like jerking movements — Lupus can affect the nervous system, and neurological symptoms like these need prompt evaluation
- Occipital pain — This type of head and neck pain can be linked to lupus-related nerve involvement
- Feeling persistently cold — Lupus can affect temperature regulation, and certain lupus medications can also contribute to this
- Bradycardia (slow heart rate) — Lupus can affect the cardiovascular system and needs monitoring
- Dysphagia (difficulty swallowing) — This can be a lupus-related neurological or inflammatory symptom The combination of neurological symptoms — jerking movements, occipital pain, and dysphagia — alongside cardiovascular signs like bradycardia is something a rheumatologist and neurologist should evaluate together, not just an ER team.

Rather than returning to the ER alone, consider contacting your rheumatologist directly and describing all of these symptoms as a cluster. Bring a written list. This pattern deserves a specialist's full attention, not just crisis management.

Please don't wait if symptoms suddenly worsen — especially the jerking episodes or any new weakness or confusion.

July 3
A MyLupusTeam Member

The cardiac symptoms suggest something is going on, that needs investigating. If your heart rate is low, you may well feel cold as you are not perfusing properly, so much as ER is a pain, you need some monitoring and tests.
I hope you get some answers. Sending you hugs for strength.

July 5
A MyLupusTeam Member

I agree you're having so many issues the best thing is go to the ER. I understand you don't want to go there again, but you absolutely should go now!

July 4

Related Questions

View All
Lupus and Body Temperature: Fever, Chills, and Sweating
Feeling Isolated and Lupus
Lupus and Feeling Like a Burden