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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.

Should I risk my health by not going to the local ER since they do not take my lupus serious

A MyLupusTeam Member asked a question 💭
Oxford, MS
July 1
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Reactions
A MyLupusTeam Member

I swear I hate this for you but I have the same frustration!! They literally say “well you’re having a lupus flare I guess since your chart says you have lupus” .. but they don’t do any work ups to see if it’s anything else OR if anything needs to be treated asap! They have sent me to an ortho literally when I had arm pain, and one leg and ankle swelling. It’s scared me so badly but nope “it’s just lupus, you have to treat it the way your rheumatologist and other specialists have been treating it.” Well I haven’t seen a rheumatologist bc I’ve moved across state and they won’t take me…. Booked up I guess. But yes I’ve showed my butt in the ER a few times. The last time I drove 3 hours to Knoxville just to get to a big city where I THOUGHT the doctors would be a little more helpful/experienced?? nope…. Only been 5 years in east Tenn and I’ve been to ER 4 times…. I really think it depends on where you live. Memphis you could have your pick of specialists at the drop of a hat.
I dunno. This post made touched a nerve! I’m so sorry!

July 4
A MyLupusTeam Member

I had my doctor send me paperwork with a list of everything that was wrong with me and every time I go to the hospital I take that with me. Sometimes it helps sometimes it don't. I hope everybody's having a good day

July 2
MyLupusTeam

Feeling dismissed at the ER when you have lupus is incredibly frustrating — and unfortunately, it's not an uncommon experience. But when it comes to a potential emergency, your safety has to come first, even if the care isn't perfect.

If any of these symptoms are present, please go to the ER or call an ambulance right away:

- Show Full Answer

Feeling dismissed at the ER when you have lupus is incredibly frustrating — and unfortunately, it's not an uncommon experience. But when it comes to a potential emergency, your safety has to come first, even if the care isn't perfect.

If any of these symptoms are present, please go to the ER or call an ambulance right away:

- Severe chest pain or tightness
- Shortness of breath
- Fainting or inability to walk, talk, or see
- Seizures
- Coughing or vomiting blood
- Spiking fever with stiff neck or headache
- Weakness or drooping on one side of the body
- Intense abdominal pain or excessive bleeding As one MyLupusTeam member put it: "I've learned if you think something is wrong, just go to the emergency room. When you have lupus, anything could be happening to your body, and it's best not to take chances."

To help advocate for yourself at the ER, consider these steps:

- Bring someone with you — a friend or family member can witness what's happening and speak up on your behalf
- Use a medical app to message your doctor — it creates a written, time-stamped record of your concerns
- Be direct — clearly state your lupus diagnosis and which symptoms feel most urgent to you
- Request a second opinion if you feel your concerns are being dismissed For symptoms that are urgent but not life-threatening, an urgent care clinic can be a helpful middle ground. However, always follow up with your rheumatologist afterward, since lupus and its medications can make complications more likely.

No one should have to settle for dismissive care — but please don't let that stop you from getting help when you truly need it. Your life is worth more than a bad ER experience. 💙

July 1
A MyLupusTeam Member

I definitely understand what you're talking about doctors don't understand these diseases at all as far as they're concerned it's all in your head. No it's not. More doctors need to be educated on more diseases and know what they're talking about. Cuz I'll bet the people that do have these diseases no more than the doctors do. Sorry to hear about all the problems you've been through it's crazy isn't it. I hope you have a great day and big hugs

July 5
A MyLupusTeam Member

If there is another hospital try that. If not go to emergency room and ask for patient advocate. All hospitals have one or something like it.

July 2

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