With Lupus, You Can Rely on Unpredictable Pain

Kellie McRae avatar

by Kellie McRae |

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Unpredictable pain


It may sound crazy to expect to be able to predict something as unpredictable as pain, so when I say “unpredictable pain” I don’t mean you should be able to set your watch by it; I mean you should have an idea of what level it will be.

For most of us, if we get a headache, often it’s not so different from the last time we had a headache. So,  when you feel one coming on, you know at what point you need to lay down or if you should take a pain reliever. It is, in that sense, predictable.

With lupus, your joint pain could be manageable today, and tomorrow those same joints can send you to the hospital looking for help to make the pain stop because over-the-counter pain relievers don’t even touch what you’re feeling. Autoimmune diseases are quite unpredictable and that’s what is so darned frustrating.

It’s situations like this that make battling an autoimmune disease … well, a battle. If we could somewhat predict the pain levels, we could be prepared for it. Most people don’t even realize they are prepared for predictable ills. In their medicine cabinets are over-the-counter pain relievers for things like headaches,  antacids for upset tummies, bandages and antiseptics for scrapes. But for autoimmune pain, these things often either don’t work or are counterproductive to our prescriptions.

For example, there are times when the ability to clot properly has been affected, so when you get a headache, adding an aspirin for that is bad because it’s a blood thinner and if you’re already having issues clotting, the last thing you need is to make your blood even thinner. Before you pop what everyone else takes for granted into your mouth, a physician should be consulted to make sure it won’t hurt your body further. These are the things our families often don’t understand; your headaches can send you to the ER, their headaches send them to the local pharmacy.

There are so many things that are taken for granted with regard to pain levels and how to control it. For many of us, the daylight hours can be painful, but once the sun goes down, then things really get painful. Some refer to it as “painsomnia.” I call them Rock ‘n Roll Nights, because there is so much pain, all you can do is rock ‘n roll.

I tease, but there is a little comfort in knowing that when you get a tummy ache, a certain remedy usually works, or when you get a headache, such-and-such will work. For most people, that pain is somewhat predictable. With an autoimmune disease, it’s always a surprise. You just never know if it will be tolerable, or send you to the ER.

My advice is to speak with your physician ahead of time and ask what over-the-counter relievers work best with the prescription medications you are taking. Sometimes you can find some relief, or at least something to take the edge off. But waiting until you are bogged down in pain is not the best time to try to figure out what you should or should not be taking.

I also have found that adding that solution as soon as the pain starts works best for me. There have been times when I thought I could handle the pain and waited, which landed me in the ER. I now do my best to have on hand the things that work with my prescriptions, and I pay strict attention to how the pain is progressing so I can decide on battling through or taking something extra in the hopes it will stave off the worst of the pain.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.