How I navigate health anxiety and ALS fears

Navigating life with ALS is a journey, and for many of us, it comes with an extra passenger: health anxiety.

Before my diagnosis, I thought my good health would continue forever. But now, along with learning to live with ALS, I also deal with a mild case of health anxiety. It keeps my mind on high alert as I notice every twitch, wobble, or stumble. I always imagine my condition is getting worse.

Like many people with ALS, I remember the first signs my body sent that something wasn’t right. I didn’t know it was ALS, so I tried quick fixes. Some things helped a little, while others were pretty risky. I spent a whole year chasing the odd symptoms. By the time I was diagnosed, I realized I’d also picked up annoying health anxiety. Since then, I’ve been finding ways to keep my worries in check.

Recommended Reading

December 5, 2023 News by Margarida Maia, PhD

Anxiety high in ALS patients, family members in months after diagnosis

Attempts to fix myself

Back in 2010, I wasn’t working. My days were filled with long walks, daily swims, and yoga. Then, out of nowhere, my right thigh muscle would tighten up. It wasn’t a cramp, just a really tight feeling. Sometimes it made me walk like a pirate with a peg leg. I thought massage therapy would fix it, so I scheduled weekly appointments. I also did more leg stretches during yoga. But the muscle tightening kept happening. So I had more massages and did more stretching.

Around the same time, standing for long periods made my feet hurt, and sometimes I’d drag the toe of my right shoe when I walked. “Aha!” I thought. “I just need better shoes with good arch supports.” But the new shoes didn’t help.

Next, I bought rocker bottom shoes. These were new at the time and had a curved, half-moon-shaped bottom. They were supposed to stretch my calf muscles with each step, but I discovered that walking in shoes with a curved bottom only made me more unsteady. I was darn lucky I didn’t have a nasty fall.

Finally, I saw a foot specialist. During the exam, she noticed how tight my calf reflexes were. She said it was called clonus, a type of muscle spasticity. She also thought I had something serious going on and sent me to a neurologist. That’s when I found out I had ALS.

Keeping my anxiety in check

Now, 15 years later, I know it’s common for ALS patients to experience anxiety and worry about their symptoms and how the disease will progress. For example, when I sit at my computer for a long time and start to slouch, I immediately worry that my back muscles are getting weaker due to ALS. But instead of getting caught in a downward spiral of thoughts, I stop, take a deep breath, and move away from the computer to do a few gentle stretches to help my back and clear my mind.

I also learn about what causes my ALS symptoms. As I previously noted, I’m learning to embrace my high-speed ALS reflexes. Clonus is like a garbled message from my autonomic nervous system. I experience quick, repeated muscle movements, and my reflexes get stuck in a loop. I can often calm them down by simply changing my body position.

Please know you’re not alone if you feel anxious about your ALS health. I feel the same way. What’s important is to notice when it’s happening. Stop, talk to someone you trust, or look up reliable information online. Together, we can help each other learn how to live well with ALS.

Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.