How I navigate health anxiety and ALS fears
I find ways to keep my worries in check

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.
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.
Ned Becker
Fully agree. As a slow progressor I am constantly monitoring and evaluating every little abnormality, cramp or new fasiculations. I know I am declining slowly but it is agonizing to really not know what is going on with my body. The anxiety around this process is something I have never experienced. I have decided to go back to a therapist I met with after my diagnosis over 2 years ago. This is also challenging my faith unbelievably and need to continue to tell myself to turn it over to God!
Dagmar Munn
Ned, you are not alone feeling these ALS-related anxieties. It seems this is something most all pALS share, but it hasn't been addressed by the medical community. Thank you for sharing your experiences with this. Dagmar
Bonny Wagner
Your article truly resonated with me. The health anxiety and the I can fix it mentality. And yes, every little symptom sets off alarm bells. I find tv or videos are my distraction.
Ann Speakman
Thank you for that - I have anxiety if I’m weaker one hour than another I’m like “oh no - it’s over - I then go down the rabbit hole”. It doesn’t mean that, I do deep breaths and see what did I eat or do or was stressed out about that caused that hour or day of fatigue and shakiness. Sugar will do it, gluten, msg,anxiety. Just fatigue from trying to do too much. It makes me feel better to know that I’m not alone. Still trying to give myself grace.
Dagmar Munn
yes, Ann, we share those same anxieties. Tracking back to find out what caused the "change" helps, but so does knowing we're not alone living with ALS. Best wishes to you, Dagmar
Patrick Moeschen
I love this column and your words. I too suffer from health anxiety and have for many years. Thank you for sharing your wisdom. You are right. Those of us living with all kinds of chronic illnesses are not alone. We must continue to share our lives and raise one another up.
Peggy Ernster
Hi Dagmar!!
I hope you remember me as I think of you all of the time!! We worked together at CFHWB in CR.
I am moving to Cottonwood and so happy to be coming back to my home in Arizona.
I follow your writings!!
Sending you love and always healing!!
Peggy
Dagmar Munn
Hello Peggy! Of course I remember you! ..... and all our adventures at CHWB. ;-) ;-) It's so good to hear from you again! I have been to Cottonwood and it's beautiful there. Welcome back to Arizona. Let's connect, I'll send you an email. Hugs to you across the miles! Dagmar