Lupus Quick Tip – Never Ignore These Symptoms

Akron Children's Hospital Mobile Intensive Care Units

Photo via cak757 on Flickr

Lupus is painful. Whether it’s headaches, swollen joints, sensitive stomachs or more, lupus patients (like many others who cope with chronic illness) learn to live with a certain level of day-to-day pain. They often troop through their normal activities, family and friends none the wiser of how much of a toll it takes. We do it; we suck up, keep calm and carry on, resting when we can. However, there are some signals from our bodies that we should never ignore.

  1. Difficulty breathing/tightness in the chest when breathing. Ugh, this was my main lupus symptom for many years and it can range from being just uncomfortable to downright suffocating. It’s called pleurisy and it’s one of the more common symptoms of lupus. It feels like you can’t catch your breath or as if something is physically constricting your lungs, keeping you from taking a breath. Don’t shrug it off; get it checked out. Pleurisy is often the lining around your lungs becoming inflamed – or it can mean that you have fluid building up around them. Mine was pretty easily controlled once I was on the right dosage of medication, but left untreated can become a serious problem. And you like breathing, right?
  2. Fever and/or chills. For years, I would have these incidents where I would suddenly become incredibly cold, to the point of uncontrollably shaking, then switch to becoming so hot that I would nearly vomit. Since it would usually all pass within a day, I never went to the ER, never talked about it to my doctor. It wasn’t until I had one of these incidents while already in a hospital that someone finally explained it – the shakes and fevers were my body fighting against an infection with everything it had. While it’s much easier to take steps to prevent infections, no one can protect against everything, but knowing the signs of an infection are a good first step to fighting them. If you’re showing signs of an infection, call your doctor. A short course of antibiotics may be all you need to avoid a hospital stay and a ton of unnecessary stress on your body.
  3. Sharp or sudden pains . If you’ve been on prednisone for a long time, or in high doses, then chances are that your bones aren’t as tough as you’d like them to be. Just in the past 6 months, I fractured both my feet and I’m not even 35, so don’t believe that broken bones only happen to octogenarians. You don’t need to fall to fracture a bone; I fractured one simply getting up from a crouch and putting pressure on the balls of my foot (where a lot of fractures happen). The pain is often really bad to start out with, but can quickly fade, making it easy to think it’s no big deal. Not! See a podiatrist or orthopedic so they can check if any serious damage has been done and set you up with the proper equipment (usually a fugly boot) to keep you from making it worse.
  4. Severe stomach issues. Spent the day on the toilet? Just because you want to chalk it up to some bad pizza, doesn’t mean that it’s not serious. A quick story; I had some bad pizza in college and got minor food poisoning. Being away at school, I couldn’t go to my doctor and had no local ones so instead I spent three days literally camped out in my bathroom. Another time a friend and I went out to lunch, shared nachos and both got sick. She was sick for a day or two, but I had to see two specialists and go for 2 rounds of antibiotics. Total damage? Three weeks. The immune suppressants that keep your lupus under control also make infections like food poisoning much more dangerous. If you think you have food poisoning, don’t tough it out. Also keep in mind that all the vomiting and uh-other stuff dehydrates your body and you may not be able to replace those fluids fast enough on your own. Cue the drop in blood pressure and fainting spells.

If you experience any of these symptoms, call your doctor or hi-tail to the nearest ER (or both). Don’t be me. The world doesn’t deserve it. 😉

What other symptoms do you think are red-flags, not to be ignored? Sound it out below! And since I haven’t mentioned it in a while, you can also subscribe and get blog posts emailed to you.

10 thoughts on “Lupus Quick Tip – Never Ignore These Symptoms

  1. I found I am feeling depressed..
    I have had two bouts of CNS lupus and each lasted longer . I try to function the best I can. I am now taking antidepressants now for about 10 days so Fay.

  2. I was diagnosed with Lupus, had problems with all aches pains etc. I have severe Vitamin D deficiency & have had breathing problems. Put them down to Pleurisy, Pneumonia that I get quite often. Have just found I have many Gallstones & need Surgery is this another complication of Lupus? Please any info would be appreciated. Thank you. Rae Whitney

    • Lupus is different for everyone- every person can have different symptoms and different problems. If you feel like your doctor is brushing off your symptoms, then definitely find another. And foundations like the Lupus Foundation of America is a great place to find resources to answer your questions.

  3. I was in emergency this morning severe dizziness said I have vertigo gave me some pills and said if it gets worse to come back

  4. Thanks for the info. I have had all these symptoms since I was told I had SLE in 2009. It realy helps me to know that I was not just going crazy and that I they were caused by my lupus.

    • It took me years before I could convince anyone that my chills were serious since they would often pass in a day or so – before I could be seen by a doctor. I think it helps to keep a record of your symptoms, on your phone or just a notebook.

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