BLOOMINGTON, ILL. -- Melissa Neumann's constant companion is pain.

But the Lexington, Ill., woman discusses her pain in a soft tone of voice, as if talking about a minor irritation such as getting stuck in the slow line at the supermarket. In fact, her pain is so severe that she has considered amputation of her arm.

"The pain has been constant for eight years now," said the former swimmer, 30, who has worked on the life administrative processing team at the State Farm Life Co. in Bloomington for three years.

"I'm so used to the pain -- to me, it all runs together."

Neumann has a rare, inherited disease called Ehlers-Danlos Syndrome. That means she has a defect in the connective tissue that supports many body parts, including muscles, tendons, ligaments and skin.

She often dislocates her knuckles and must pop them back into alignment herself. She has swelling and pain throughout her body. She takes prescription painkillers, an anti-inflammatory drug and an anti-depressant.

But her pain is most severe in her left shoulder and upper arm. She has lost most arm function, and her arm usually is in a sling. Thirty-two surgeries have provided no more than temporary relief.

'I'd take amputation'

Numerous specialists have told Neumann she has the most severe case of Ehlers-Danlos they have treated. Even though she is seeing cutting-edge limb preservation specialists in Denver and in Chicago, she knows there are no guarantees.

"Some days I think if I could get rid of the arm myself, I'd do it. Or, if they'd offer amputation, I'd take it," Neumann said.

Then she reconsiders, hoping the next surgery will help, and recognizing that even amputation addresses the disease in only one part of her body.

At that point, Neumann becomes prayerful. She believes her role in undergoing rare procedures is to help doctors to learn so they can better treat other Ehlers-Danlos Syndrome patients who wouldn't be able to take the pain.

"The doctors have learned what is not an option. Hopefully, I've learned enough to help someone else who is about to go along the same path."

Her best friend since college, Jennifer Dahn of Decatur, appreciates Neumann's tenacity.

"She has a passion for life," Dahn said. "She wants to make a difference in the world, to touch as many lives as she can. I admire that."

Neumann declines to take complete credit for her attitude.

"God knows I can do this. Who am I to say I can't?"

Signs of trouble

Neumann went to Concordia University-River Forest in River Forest. A competitive swimmer, she planned to get a degree in athletic training and exercise science while continuing to swim.

The morning after her first day in an Advanced Swimming and Diving class in fall 1996, she woke up with a pain in her right arm. In subsequent weeks, the pain in both arms and shoulders increased.

Doctors in the Chicago area misdiagnosed her and performed several surgeries during the next three years to try to stabilize her left shoulder. All failed because she had Ehlers-Danlos syndrome and doctors didn't know it. They were treating for a problem Neumann didn't have.

More surgeries followed. Neumann was able to graduate in May 2000, but her continued pain prevented her from finding full-time employment.

In 2001, the head of the Steadman-Hawkins Clinic in Colorado diagnosed her with Ehlers-Danlos syndrome, and a genetic specialist in Chicago confirmed the diagnosis. There is no cure, and doctors treat it on a case-by-case basis.

Neumann's left shoulder joint was fused in October 2001. That eliminated pain only for a while. In March 2002, the hardware was removed without improvement. So later in 2002, the entire shoulder joint was removed and a joint replacement was put in. But the artificial joint dislocated and began stretching and tearing surrounding tissues and tendons.

In 2003, the artificial joint was removed and replaced with cadaver tendons. When that didn't help, they were removed. Next, the shoulder blade was fused to her ribs and a bone stimulator was implanted to enhance bone fusion. But painful grinding led surgeons in 2004 to remove 6 to 8 inches of bone in her upper arm. When pain continued, all the fusion hardware was removed in 2005.

In December 2006 in Denver, limb preservation specialists implanted two pieces of cadaver heel bones and three cadaver Achilles' tendons into Neumann's shoulder. The two pieces of bone were 4 inches apart and were connected and stabilized by the tendons.

Botox helps

But by summer 2007, X-rays showed a high resorption rate, meaning her body was dissolving the implanted bones and tendons. Whether that was because of the Ehlers-Danlos syndrome or another cause is unknown.

Neumann began to experience sharp pain in the area of the lower implanted bone.

"I couldn't tolerate the pain. It made me sick to my stomach. It was such sharp pain, it almost took my breath away. I almost blacked out a couple of times. It was nothing that pain medicine could touch."

In October 2007, a surgeon found a large bone spur on top of the bone and removed it. He then discovered fluid that had resulted in infection near one of the screws used to hold the bone in place. The screw had become loose, which caused pain. He cleaned out the fluid and removed the screw.

Shortly thereafter, the second screw in that bone became loose.

Another specialist injected Botox into her shoulder and arm where she has a lot of pain. Her pain subsided.

"I played more with my nieces and nephew. I had more energy. I was able to spend time out of my sling."

After about three months, the benefit of the Botox had diminished.

"It's been a constant increase of pain since then," Neumann said. Pain is so severe at night that she has trouble sleeping.

A fall down a flight of stairs in March -- which ruptured three tendons in her right ankle -- complicated matters.

Neumann was scheduled to return to Denver, where another surgery was scheduled be performed to determine whether any adjustments need to be made in her left arm and shoulder. Doctors and Neumann then would determine whether another Botox treatment would help, whether she should have a spinal cord stimulator implanted to reduce pain, or whether it's time to amputate.

Then, she hopes to have surgery on her foot.

Meanwhile, Neumann is again battling depression and doesn't have energy for much of anything beyond work. She is searching for a professional counselor or psychologist who can help her.

"Some days, getting out of bed is extremely difficult," she said, fighting off tears. Her faith, family, friends and job help to keep her going.

"I see the smiles on my nieces and nephew, and I know that everything will be OK."