How did I find out I had lupus?

I cannot tell you the specific details of your personal diagnosis, as I do not have access to your private medical history. Generally, people find out they have lupus after experiencing a variety of symptoms that prompt a doctor to order a series of tests and rule out other conditions.

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How did I know I had lupus?

Lupus causes swelling and irritation, called inflammation, that may affect joints, skin, kidneys, blood cells, brain, heart and lungs. Lupus can be hard to diagnose because its symptoms often are like those of other illnesses. A common sign of lupus is a facial rash that looks like butterfly wings across both cheeks.

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Can lupus cause knee swelling?

Joint pain, swelling and stiffness can be the main symptoms for some people with lupus. In most cases, lupus is unlikely to cause permanent damage or change the shape of joints.

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Can lupus cause headaches?

About 20% of patients with lupus have migraine-like headaches. These headaches are different from “lupus headaches,” which are due to active lupus and require a lumbar puncture (spinal tap) or blood vessel study (MRA or CT-angiogram) for diagnosis. A true lupus headache usually requires corticosteroids for treatment.

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How long can you have lupus without knowing?

Lupus is known as "the great imitator" because its symptoms mimic many other illnesses. Lupus symptoms can also be unclear, can come and go, and can change. On average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice their lupus symptoms.

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My Journey to a Lupus Diagnosis: Advice for People Who are Newly Diagnosed

39 related questions found

Why do doctors not want to diagnose lupus?

Because symptoms present similarly to other ailments, your doctor may not test you for lupus. Many go through a process of elimination through testing for other causes of the symptoms first.

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What are the first warning signs of lupus?

The most common symptoms include:

  • Pain, including in your joints, muscles or chest (especially when you're taking a deep breath)
  • Headaches.
  • Rashes, especially across your face, which healthcare providers sometimes call a butterfly rash.
  • Fever.
  • Hair loss.
  • Mouth sores.
  • Fatigue.
  • Shortness of breath.

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What is the sister disease to lupus?

Lupus and Sjogren's syndrome are both autoimmune diseases. Up to 5.5 million people in the U.S. have been diagnosed with lupus or Sjogren's syndrome. However, Sjogren's syndrome occurs up to three times more than lupus, but one-third of lupus patients also have Sjogren's syndrome.

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What are the strange symptoms of lupus?

Some uncommon symptoms of lupus include angina, stroke and mini-stroke, pregnancy loss, kidney problems, and blood problems. Lupus can be difficult to diagnose, but reporting less common symptoms may help doctors make an accurate diagnosis.

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Do people with lupus sleep a lot?

Many people with lupus have trouble sleeping. If you are waking up a lot at night or having trouble falling asleep, this can lead to more tiredness and fatigue throughout the day.

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What do lupus legs look like?

Subacute Cutaneous Lupus Erythematosus

SCLE can cause circular red patches with a ring-like border that may be scaly. These rashes often show up on sun-exposed skin, including the legs, and usually don't itch or cause pain.

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Which muscles hurt with lupus?

Pain in the muscles (myalgia) is a common symptom in lupus patients. The upper arms and thighs are the most frequently involved areas. In some cases, the pain is accompanied by muscle weakness, which is known as myositis.

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Does lupus cause night sweats?

They're also common in autoimmune conditions, including rheumatoid arthritis and lupus, where inflammation plays a key role. Night sweats can point to neurological issues such as autonomic neuropathy, which affects the body's temperature control.

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How hard is it to get diagnosed with lupus?

Lupus can be difficult to diagnose because it has many symptoms that come and go and can mimic symptoms of other disorders or diseases. When speaking to your doctor about your symptoms, be sure to include symptoms that may no longer be present. Your doctor may need to rule out other causes before diagnosing lupus.

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Do you feel the cold more with lupus?

The reasons why some conditions are more susceptible to the cold than others are unknown, but cold temperature's effects on blood vessels appear to play a role in how flare-ups are triggered. With lupus, cold temperatures activate painful flare-ups as blood vessels constrict to minimize heat loss.

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What are the symptoms of lupus attacking the nervous system?

Lupus and the autonomic nervous system

Those symptoms include numbness, tingling, burning, headaches, confusion, diarrhea, and Reynaud's phenomenon. Reynaud's phenomenon is the excessive constriction of blood vessels (and subsequent restriction of blood flow) in response to cold exposure.

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What is the cruel mystery of lupus?

Lupus can attack many different parts of the body. Some call it the cruel mystery. Lupus is an autoimmune disease that can strike any part of the body, but the wide range of symptoms can be easily mistaken for something else.

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What acts like lupus but isn't?

Some of these "SLE mimickers" are very common, such as rosacea which can be mistaken for the butterfly rash, while others such as Kikuchi disease, type-1 interferonopathies, Castleman's disease, prolidase deficiency, angioimmunoblastic T-cell lymphoma, Evans' syndrome in the context of primary immune deficiencies and ...

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What calms lupus?

The medicines used most often to manage lupus include:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs that you get without a prescription can treat pain, swelling and fever linked with lupus. ...
  • Antimalarial drugs. ...
  • Corticosteroids. ...
  • Immunosuppressants. ...
  • Biologics.

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Why can't you be a mom with lupus?

Pregnant women with lupus, especially those having a flare, are at higher risk for complications. These include: Miscarriage. Preterm delivery, especially with a lupus flare.

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What is mild lupus like?

People with mild lupus may have just a few symptoms, such as skin rashes or achy joints. In other cases, lupus can harm essential organs, including the kidneys and brain. “Diagnosis is one of the biggest challenges patients can face,” says Gourley.

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What virus is connected to lupus?

The vast majority of EBV-infected people (most of us, that is) have no idea they're still sheltering a virus and never get lupus. But essentially everyone with lupus is EBV-infected, studies have shown. An EBV-lupus connection has been long suspected but never nailed down until now.

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What can trigger lupus to start?

Most experts believe that several factors work together to cause lupus, including a person's genes, their hormones, and contact with environmental triggers. Environmental triggers are things in a person's surroundings (like where they live or work), habits they have, or even certain events they experience.

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Where are lupus headaches located?

The headaches may come in episodes or may be an all-day or frequent occurrence. Headaches may be related to tension in the muscles around the eyes, face, neck or shoulders. Migraines are another common type of headache experienced by people with lupus.

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