One Step at a Time

The dreaded traveling circus of inflammation is forever growing and changing. Struggling with lupus for over 20 years has taught me… Nothing is ever easy! Lupus exacerbates the simplest of medical issues. There are times that my stubbornness and denial cause more problems. I’ll admit that I’m a bit of a procrastinator. I’ve learned that denying or pushing through pain is considered self-destructive behavior. It’s been a hard lesson to learn.

Per lupus foundation of America, 90% of people that have SLE will experience joint and muscle pain. I had a pain in my foot. Simple right? RICE (Rest. Ice. Compression. Elevate.) which I use whenever I have any new joint inflammation. After a joint has been inflamed for more than 72 hours, it’s routine to switch to heat.

After a couple weeks without improvement from anti-inflammatories, I saw my rheumatologist. I complained that my foot was swollen and painful to walk on. After x-rays, I was prescribed a surgical boot to take pressure off the ball of my foot and steroids.

After two months walking in the boot, I received a cortisone injection in my foot. Most painful injection I’ve ever had! Cortisone injections are painful but it’s the quickest and safest way to decrease inflammation.
Additionally, walking in the boot threw off my balance which caused hip and back pain in addition to the continuous foot pain. So, my rheumatologist treated me with more oral steroids, a muscle relaxer and pain relievers.

Seventeen months later, my foot pain continues to remain unresolved in spite of two cortisone injections, oral steroids and anti-inflammatories. My hip has been ailing me intermittently for fifteen months however for the past 2 months the pain is worse. I’ve been having difficulty getting up the 12 stairs in my home. So I literally crawl up the stairs. Getting up the stairs is painful but there isn’t any problem going down the stairs. Curious huh?

As of today, I’ve had 3 injections for my hip bursitis and two injections to my foot in addition to oral steroids, muscle relaxers and pain relievers. Since that didn’t help, I was sent to physical therapy. The therapist quickly got to the bottom of the problem with a simple exam. It turns out that my IT band has scar tissue and my trocantar muscle is weak. I just about hit the ceiling when she palpated the areas.

Physical therapy continues and so does the pain as I try to build muscle through exercising those muscles. The therapist taught me it’s important to keep my body in alignment. I hadn’t realized how much I had slacked due to fatigue. I’ve learned to balance activities with rest periods. It’s nothing new but I’m more diligent these days. Learning to protect my joints is very important too. Instead of bending at the waist, I’ve learned to bend at the knees. Aldo, I go to sleep with a pillow between my knees which takes the pressure off my hips and back. When I’m reading, I’ve learned to get up every 15 minutes and move around. And now I have exercises to strengthen my hip and thigh muscles to perform twice a day. Icy Hot and the heating pad are my new best friends.

The Lupus Foundation of America states 10% of people with Lupus experience muscle pain and /or weakness during a flare which is a direct attack by the immune system. Symptoms include aching muscles (myalgia), weakness and pain. Inflammation of the muscle is called myositis. Tendonitis is also common. Tendons connect muscles to the bones. It’s the same treatment for every ailment, Nsaids, steroids, and plaquenil.

As a result of the steroids and immobility, I’ve gained 10 pounds over the last six months. Exercise, says the doctor. I try to explain that it’s difficult to get moving when I’m fatigued and in pain. Mobility is definitely an issue for lupies.

Soooo… nothing is ever easy when you have lupus. I’m still fighting, taking one step at a time.


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