Experiencing the First Symptoms of Lupus?

The First Signs of Lupus – The Patient Perspective

While the LFA and many other organizations do a good job of explaining the symptoms of Lupus and developing dianosis criteria, I wanted to take a bit of a different approach and describe the first symptoms of Lupus from a patient perspective. No matter how much medical analysis and survey data is collected, there is nothing like hearing real world experiences from someone who knows exactly how you are feeling.

On this page, I’ll provide detailed symptoms that that many of the Lupus patients I have met or worked with have described, as well as the symptoms I experienced when I first became I’ll- well before I knew it was possible to improve my condition.

Note- some of what I describe may not be found in the “traditional” medical literature, but they are very real symptoms for those who have to deal with them. If you have ever tried to describe something to your doctor and had her look at you quizzically or in disbelief- you are not alone. Below are some of the common-and not so common first symptoms of Lupus:

Possible First Symptoms of Lupus

  • A red, raised and inflamed rash on your face, known as the malar rash or butterfly rash. You can also experience skin issues on other areas of your body.

  • Bone Crushing Fatigue, which may creep up on you over time, or hit suddenly like a ton of bricks. Unfortunately, sleep may not do much to reduce the fatigue and it can interfere with your ability to socialize, run errands and do simple chores around the house.

  • Joint stiffness or swelling that can make it hard to grasp objects, bend at the knees, carry bags, sit for long periods or walk far.

  • Constant pain that seems to penetrate your muscles and bones. Regular pain medication barely makes a dent.

  • Tingling in specific areas or all over your body, sometimes feeling like small electric shocks.

  • Forgetfulness, also known as “Lupus Fog”. You may have trouble recalling events in the past, or even forget something you did this morning. Holding conversations may also be difficult, as some people feel as if they are having a hard time keeping pace with what is being said.

  • General clumsiness due to lack of coordination brought about by pain, nervous system involvement and swollen joints.

  • Chest Pains (heart) which can show up when you are under stress or exerting yourself physically. The pain may be sharp and intermittent, or more consistent in the form of a dull ache that doesn’t seem to go away.

  • Constant headaches are also one of the first symptoms of lupus, which can range from a dull ache to searing pain on one or both sides of your head

  • Pounding in the temple area (inflamed blood vessels), which feels like your blood pressure is elevated.

  • Pain when breathing, shortness of breath, and feeling as if you constantly have pneumonia.

  • Depression, anxiety and the feeling that most people in your life don’t understand what is going on with you.

Every Person is Different

Because every person is different, when it comes to lupus, early symptoms you experience may be different than the next person. Many of us with Lupus have similar symptoms, but there is also a lot of individual variation.

For most people, they begin by experiencing one or more symptoms, which tend to get progressively worse over time. The problems may initially seem negligible and may be dismissed or written off as another ailment or illness. Lupus is known as the “copycat” disease and a lot of patients go through a number of possibilities before confirming- or even thinking of lupus.

For other people, the first symptoms of lupus may hit all at once out of the blue, without a gradual buildup. This is often the result of a reaction to a drug, surgery, infection or trauma. Understandably, the sudden onset of symptoms is confusing and can cause a lot of anxiety.

If you can relate to any of the patient experiences above, you may in fact have lupus. There are official symptoms and criteria that doctors look for before making a definitive diagnosis, which you can read about here. It is important to work closely with a health care provider to diagnose and treat your condition, as well as develop a system of support to help you navigate this new experience and lay the framework for recovery.