What It Feels Like to Live With Arachnoiditis

When most people hear that I have a disease called arachnoiditis they usually ask, “Oh, you are afraid of spiders?”

It does sound similar to the term arachnophobia, but in reality arachnoiditis is a rare and severely debilitating condition caused by inflammation of the arachnoid lining of the brain and spinal cord.

According to Spine Universe, “the inflammation often causes constant irritation, scarring, and binding of nerve roots and blood vessels.”

If I had to describe the pain, I would say it feels like a pitchfork is stabbing me in my lower back and being bitten by thousands of stingrays on my lower limbs at the same time.

My arachnoiditis developed after numerous lumbar back surgeries resulting from the emergency condition cauda equine syndrome. I also had multiple lumbar punctures and epidural steroid injections while doctors were looking for answers to my continued symptoms, both of which can worsen the condition.

After the diagnosis of arachnoiditis, I started researching the condition, and was
devastated. It was obvious my life was being turned upside down, and I was going
to need to learn a different way of living. The progression can lead to paralysis and permanent use of a wheelchair.

My diagnosis was eight years ago. I ended up going on permanent disability and spending most of my time at home in severe pain, at doctor’s appointments or at physical therapy appointments. I needed to adjust my entire life learning to live with numbness and weakness in my left leg, bladder dysfunction and severe pain.

Arachnoiditis is an iatrogenic condition, meaning it is caused by medical treatment, and can be difficult to diagnose. Causes can include trauma to the spine resulting from multiple surgeries, epidural steroid injections, epidurals for childbirth or the introduction of foreign substances into the spinal fluid.

Many of those with arachnoiditis go years and multiple rounds with all types of medical professionals before receiving a diagnosis. As a result, the pain often goes uncontrolled, mental stability can be affected, and patients often undergo multiple procedures like epidural steroid injections for pain relief that are actually shown to worsen the condition.

In addition to severe spine and nerve pain arachnoiditis often causes bowel, bladder and sexual dysfunction, weakness and altered sensation in extremities. Interruption of the flow of cerebral spinal fluid by clumped nerve roots or scar tissue cause headaches, alterations of proprioception, vision disturbances, hearing loss and dizziness. Often the symptoms can mimic multiple sclerosis and many arachnoiditis patients undergo testing for multiple neurological disorders with no definitive results.

Arachnoiditis may have changed my life drastically, but I do not let it define me. With the help of my family, medical care, pain management, physical therapists and my determination, I have learned to live with arachnoiditis without letting it control my life.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Arachnoiditis

What It's Like to Be a Parent With Chronic PaIn

I always had the idyllic dreams of adulthood: a career, a husband, a home and having children of my own. Little did I know, my life would be turned upside down by several rare illnesses that cause daily severe pain most people can’t even imagine. Emily and her son. I was lucky enough to accomplish [...]
couple kissing in a park. floor view

When a Peer Told Me I'd 'Die Alone' Because I'd Never Understand People

One of the worst bullying experiences I’ve ever encountered happened almost 10 years ago, but I can still remember it like it was yesterday… I was in high school and, while in the staircase after recess I was having a conversation with one of my friends about girls. He was telling me about a date he was recently on [...]
Lila with her friends.

When People See My Daughter With Down Syndrome and Ask 'How Do You Do It?'

It’s no secret that my daughter was born with an extra chromosome. A new friend recently asked me about Lila after she met her, “Does your daughter have Down syndrome?” I said, “yes,” then I told her all about Lila and how we learned her diagnosis after birth. “I don’t know how you do it, I [...]
Boy holds Stop Bullying sign.

To the Young Man With Down Syndrome Who Was Being Bullied at Work

Dear Ryan, I didn’t know what to expect when you quietly approached me after a keynote presentation I had given to a room filled with parents, educators and young self-advocates about bullying of students with disabilities. At first, you spoke hesitantly. I could feel there was something really bothering you. You explained, bit by bit, how you were being bullied at [...]