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.

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