I’ve been living with lupus for over 13 years now. Here are a few things that I’ve found that help make life a little easier, reduce pain, or give relief: 

I experience a lot of muscle pain and stiffness, so massage is extremely helpful for me. When I’m massaging myself at home, I use an S-shaped trigger point massage tool that helps with knots and hard-to-reach spots. If you like pressure, definitely get this! It’s also helpful for migraines. I also use a Hypervolt, which provides a wonderful percussive massage.

I started using a foam roller in physical therapy and found that it really helped with my muscle pain and tension. It can be used for so many different areas of the body. It helps for stretching as well as targeting problem areas. I stick it under my couch when I’m not using it!

Whenever I get a migraine, the first thing I do is apply a hemp muscle rub. I don’t know what it is about this rub, but it really reduces my pain and I never leave my house without it. I recently discovered an ice pack hat that tends to all pain areas and stays on very easily. I also love my acupressure mat, which I use when I’m having general back and neck pain.

This one may seem obvious, but using a pill organizer changed my life. It’s so wild to me to think that I didn’t use one for so many years! I now have a weekly organizer with four compartments per day. I fill it up every Monday and then don’t have to think about it for the rest of the week – no forgetting if I took my pills, no scrambling to get my meds together before I leave the house. I also have a mini organizer I use for traveling.

I see my rheumatologist once a month. I could have a million issues in the weeks leading up to my appointment, and then when I see her, I totally forget it all. I use the Notes app on my phone to write down any questions, symptoms, or new issues that come up (right as they happen) so I never forget to mention anything to her. Right before my appointment, I often go over it with my mom and my girlfriend to see if there’s anything that they remember or notice that I missed. It helps me stay organized in my appointment and helps ensure I don’t forget anything important!

Our bodies are all so different, so these tips may not work for everyone! I urge you to explore and try as many different things as you can. Don’t be hard on yourself if it takes time to find something that helps or if something doesn’t help every single time you use it. Taking care of yourself is hard work, so try to congratulate yourself for the effort, time, and research that go into it!

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Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

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