Patient Story: "Move It or Lose It" My Journey with Arachnoiditis

EveBlackburn
May 4
6 min read

Eve Blackburn, VP of Patient Engagement at ACMCRN, seated at home with the text "A Message of Hope — You're Not Alone. You're Still Here."

My story with Adhesive Arachnoiditis didn't start with a diagnosis.

It started with pain… and not being believed.

Where It Began

My health issues began after two failed spinal fusion surgeries in the late 1990s.

From that point forward, things never really went back to normal. The pain changed. It deepened. It became something harder to explain.

Over time, I started to suspect something more serious was going on.

Something wasn't right.

Years of Interventions Without Answers

By the time I started seriously questioning what was happening, I had already been through years of treatments and procedures.

Multiple epidural steroid injections. Deep nerve root injections. SI joint injections.

Three spinal cord stimulators.

And eventually, a pain pump delivering high doses of medication.

Despite all of that, my symptoms continued to worsen.

Looking back, I can't ignore the pattern. What may have started as more focal Arachnoiditis after my fusion surgeries appeared to become more widespread as I underwent repeated interventions.

With each procedure, things progressed.

At the time, no one was connecting those dots.

I had gone through all of this without anyone identifying the underlying condition.

The Moment Everything Clicked

Back in 2009, I started searching my symptoms online. By that point, search engines were finally getting better, and for the first time, I was finding information that actually matched what I was experiencing.

That's when I came across information about Arachnoiditis.

I remember the exact moment.

I was lying in bed, reading through the symptoms, and it all clicked.

I rolled over and told my partner, "This is me. This is exactly what's going on with me."

It was the first time everything made sense.

But it didn't come from my medical team.

It was something I had to uncover on my own.

Advocating for Myself, and What Followed

I brought that information to my pain specialist and told him I believed I had Arachnoiditis.

He told me it was an "old disease" that didn't really exist anymore.

Eventually, he agreed to do a CT myelogram.

That decision started a chain of events that nearly cost me my life.

During the procedure, contrast dye was injected into the side port of my pain pump without properly clearing the catheter.

I was on a very high dose of fentanyl at the time.

I overdosed.

I nearly died.

Recovery took months. I lost 80 pounds. I couldn't eat solid food for a year.

And even after all of that…

I still didn't have a diagnosis.

A Long Decline Without Answers

In 2014, after a spinal cord stimulator was removed, scarred leads were pulled from my spine. When they were removed, they tore the dura, causing a severe CSF leak.

Everything I had gained from years of aquatherapy was gone almost overnight. The burning pain came back. I was bedbound again, starting from scratch.

If I could go back knowing what I know now, I never would have had it removed.

And the move to Oregon in 2016 on top of that made everything worse. But at the time, I still didn't have my diagnosis. I was making decisions without the full picture. That's the cruelest part of a delayed diagnosis, you can't protect yourself from choices you don't know you shouldn't make.

Starting Over From Nothing

When I moved to Oregon in 2016, I didn't just relocate.

I lost my entire medical history.

My former doctor had been arrested and convicted, and my records were taken by the DEA. I never got them back.

I arrived with almost nothing.

One incomplete page.

Incorrect diagnoses.

And a pain pump delivering an extremely high dose of fentanyl.

No one wanted to take me as a patient.

Around that same time, something else started happening.

The severe burning pain in my feet came back, worse than it had ever been before.

At the time, I didn't fully understand what it meant.

Looking back now, I know that was the beginning of a major flare.

The start of a downward spiral.

I found one doctor in Portland who agreed to help me just 24 hours before my pump would have run dry.

The alarm had already been going off for two weeks.

There was no reserve.

If that pump had emptied, I likely would not have survived.

The Diagnosis, By Chance

The diagnosis didn't come from a doctor finally connecting the dots.

It came by accident.

While going through paperwork for a Medicare wheelchair request, I found a file that included two years of chart notes.

Buried in that file was the report from the original myelogram.

It clearly stated I had Arachnoiditis.

That was the first time I ever saw it in writing.

That one document led to an MRI, which finally confirmed the diagnosis and allowed me to rebuild my medical record properly.

That moment changed everything.

What This Experience Taught Me About Rare Disease

One of the hardest parts of this journey wasn't just the condition itself.

It was the time it took to be properly diagnosed.

For me, it took 17 years.

That kind of delay is not uncommon in rare diseases.

Looking back, that delay mattered.

Had I known I had Arachnoiditis earlier, I would have made very different decisions.

I would have avoided certain procedures.

I would have been more cautious about interventions that can aggravate the condition or contribute to progression.

But I didn't have that knowledge at the time.

You can't protect yourself from something you haven't been told you have.

What Helped Me the Most

Over the years, I tried just about every alternative treatment available at the time. Acupuncture, massage therapy, physical therapy. I was willing to try anything that might help.

Of everything I explored, one of the most effective was aquatherapy.

From 2009 to 2013, I used a therapy pool with flotation support.

During that time, I felt almost normal again.

It gave me movement without the same strain, and it made a real difference in my quality of life.

If you have access to a therapy pool, I strongly encourage you to look into it.

What I've Learned Since

One of the biggest lessons I've learned is this:

Movement matters.

Even now, I spend a lot of time in bed and use a wheelchair when I'm up. But I still make myself move.

I get up. I shower every day. I cook when I can, even though it's painful, because it's something I love and how I show care.

I can't do what I used to.

But my independence still matters.

For years, I thought resting would help.

Now I know for my body, it's the opposite.

With the pressure in my spine, lying still actually makes things worse.

Movement helps. I can feel the difference.

The Cost of Being Bedbound

In 2022, I developed a second CSF leak. That one lasted roughly two to two and a half years.

I spent most of that time largely confined to bed. It changed everything physically.

My muscles atrophied significantly, and even after the leak eventually sealed, I've struggled to regain that strength. It hasn't come back the way I hoped.

Age plays a role. I'm 63 now, and I've been living with this since 1996.

I know this disease can catch up with me.

But I also know I've had good years.

Why I Share This

There were multiple moments in my journey where I could have lost my life.

Not just because of the disease itself, but because of misdiagnosis, lack of awareness, medical mistakes, and system failures.

That's why I do advocacy work.

I don't want anyone else to go through what I did.

A Message of Hope

If there's one thing I want to leave you with, it's this:

There is hope.

When I first started this journey, Arachnoiditis was barely recognized.