“You can’t know unless you’ve walked in our shoes,” said Nikki Rice. “I tell my family. I tell my friends, but I can see it in their faces that they can’t grasp how truly painful this is.”

“It feels like I have bugs under my skin and they are just chewing on me,” she said. “How can anyone understand what that feels like?”

Rice is one of two women from Texas who are staying at Terri Anderson’s home in Hamilton.

Sitting on the deck that overlooks the Bitterroot Mountains, the three are talking in rapid fire about the changes that occurred in their lives since their diagnosis of Arachnoiditis.

Those mountains shimmering off in the distance in the morning light are a daily reminder to Anderson of what she’s lost.

As a U.S. Forest Service employee, there was a time that she would hike 20 miles deep into the backcountry to do her job. Today, it’s painful for her to step down off the deck and onto her lawn.

“People look up at those mountains and see their beauty,” she said.

“For me, it represents my old life that’s now dead and it’s never coming back.”

All three women contracted the disease after medical procedures were done to their backs. All three struggled to find a physician with the understanding necessary to treat a disease that many consider to be rare and hopeless.

Arachnoiditis is a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the spinal cord. The inflammation can lead to the formation of scar tissue and adhesions, which can cause the spinal nerves to stick together.

Its symptoms include severe stinging, burning, cramps, spasms and twitching. It can affect the bladder and bowels. If left untreated, it can cause paralysis.

The pain can be so severe that some patients have taken their own lives.

Rice and Rhonda Posey travelled from Texas to Anderson’s home this week so they could take part in a pioneering conference this weekend in Helena that will bring patients and members of the Montana medical community together to learn from the man that many consider the guru in the treatment of the disease.

Dr. Forest Tennant of California has specialized in the research and treatment of intractable pain since 1975. He has developed a protocol based on years of research on Arachnoiditis that is making a huge difference in people’s lives, including the three women sitting on Anderson’s deck.

Rhonda Posey held a garage sale and turned to her church to help her raise the money she needed to be able attend the two-day conference.

In 2013, Posey went in for what she believed was a routine epidural to treat pain in her back. She had already had a number of similar procedures, but this time was different.

The physician accidently punctured the thin membrane that protects the spinal cord.

When she woke up from the surgery, she immediately knew something was terribly wrong.

“My whole body felt like it was on fire,” she said. “Never in my life had I felt pain like that.”

When she attempted to go back to the doctor who treated her, he told her that she was no longer under his care and assured her that she would feel better soon.

The pain has never gone away.

“I was a master gardener and shared a cleaning business with my daughter,” she said. “I was very active in my community. And all of a sudden, I wasn’t able to do any of that…All I could do was lie in bed and cry for the pain and all that I had lost in my life.”

This spring, Posey travelled to California with Rice to meet with Tennant. Since she has started his four-step protocol, she’s been able to manage her pain better and get some of her life back.

It’s an experience that all three women shared.

Posey said she considered suing her doctor, but her attorney promised it would be a long court fight. After finding others facing the same struggles through social media, she decided that her efforts would be best served through advocacy.

“I want to tell people my story,” she said. “I want to warn people about this.”

Kate Lamport of the Helena is also an Arachnoiditis patient of Tenannt’s who helped put together the upcoming conference of about 60 people.

“Dr. Tennant is the leading authority on this disease,” she said. “The other two doctors who had been focused on Arachnoiditis have retired. Dr. Tennant could retire at any time. We need more doctors who are aware of this condition.”

“The rate of suicide is climbing rapidly now because of the government’s focus on opiates,” Lamport said. “The pain community is scared right now. We need doctors who know how to treat us. There is more to our pain treatment than just opiates. Dr. Tennant covers them all.”

The conference will be videotaped. Copies of it can be obtained by emailing Lamport at katelamport812@gmail.com.

“Everywhere I go, people are asking about this conference,” Lamport said. “There are a lot more people out there with this illness than what’s known.”