Can You Prioritize Physical Strength With Lupus Pain?

One year ago, I began to struggle with pain and instability in my wrists. I had struggled with the pain of lupus arthritis in my hands since the very beginning of my symptoms, but being unable to use my wrists presented a whole new world of problems for me. It wasn’t just pain that I was experiencing – it was a critical loss of function.

I didn’t see it coming

I remarked to my husband that I spent years avoiding doing things that caused pain in my hands and now I was paying a price for it because I didn’t have strong muscles that could protect my wrists. His response, while kind and empathetic, also poised the question: did you not realize this was a potential outcome?

No. The answer is no, I did not realize that I was leaving myself vulnerable to wrist and elbow injuries by using my hands as little as possible when they ached. Maybe that was short-sighted. I didn't see my own weakness.

But, I was consistently overwhelmed by my health issues – looking at them instead of seeing the potential dangers ahead. And while the issue would likely have been minimal if I was stronger, the element of autoimmune injury that happened was not as preventable.

I have spent a lot of time reacting and trying to solve health problems, and not enough time preventing them. If I had been able to manage the pain in my hands better, through treatment, therapy, or lifestyle changes, then I would have had the opportunity to move and strengthen the surrounding muscles more.

I wish someone would have told me, warned me, or helped me find a better approach.

Preventative care is more important than ever

I’ve heard it over and over in lupus circles: preventing damage is easier than stopping or reversing it. I am living that truth now as I’ve spent a year with wrist pain and very little forward progress. It’s hard to believe, because prioritizing preventative care was a priority for me from day one with lupus. I took my medications, I wore sunscreen, I rested during flares, I kept a close eye on my vitamin D levels – but no one ever told me to prioritize physical strength.

In my lupus education, there was an emphasis on exercise and maintaining a healthy heart and weight. But I don’t recall hearing about the importance of strength training. I wish I could go back and create a more well-rounded program of preventative care for 26-year-old me and tell her to seek strength whenever possible.

Dealing with the consequences

I’ve had an exhausting and frustrating year since my wrist instability issues began. I’ve learned an awful lot about hand-wrist-elbow connections work and how they can go haywire. I’ve spent a lot of time getting imaging, talking to doctors, and going to physical therapy. If I had spent the same amount of time working, I’d have earned a great deal of money. It’s a difficult, multifaceted loss.

After all this time and effort, I still have hand, wrist, and elbow issues that prevent me from functioning with a the quality of life that I want. I can’t simply cook dinner, pick up my kids, buckle a seat belt, or push a stroller without risking more pain, damage, and immobility. While I’ve found some workarounds, what I want most is the full usage of my hands and wrists. But I can’t seem to find my way out of it.

I want that layer of strength more than almost anything. I want a slab of protective muscle that will keep my joints from being compromised. Who knows what area could be at risk of injury next?

Trying not to blame myself

Even in my current physical therapy regimen, I am in an ongoing loop where I gain strength and then lose it. The first loss happened when a virus set me back, then a flare, and then two more viruses. Even on my good weeks I struggle with consistency because I have to pace myself -and I get tired an awful lot.

Will I ever be successful at becoming strong when my physical abilities are often rudely interrupted by lupus? There are many reasons why it can be – quite literally - a disability. Sometimes I feel like I’m watching a race where the things that cause me pain keep gaining a lead against the things I do that help prevent or lower pain. I’m not a simple bystander, but a desperate participant eager for my team to win.

I can’t go back and prevent this issue, but I can tell others my story and hope that it helps someone. And I can also keep trying to obtain that ever elusive strengthening of my body, even if I feel a bit like an animal endlessly chasing a dangling carrot while I do it.

Have you been able to stick to a strength training routine while living with lupus? I’d love to hear stories in the comments.