A passionate teacher who flourished in the classroom and loved her fourth-grade students. But in September 2000, a workplace fall changed everything. She began a long journey that led first to despair, then to acceptance and hope.
After her injury, Michele saw a worker’s compensation doctor, who prescribed pain medication and time off. Three days later, her pain increased; Michele’s doctor requested an MRI of her right knee. She also got a cortisone injection, stronger pain medication and a prescription for physical therapy. The MRI showed a torn meniscus in the right knee, but an orthopedic surgeon recommended against surgery, putting her on bed rest and continued pain medications and physical therapy. He expected her to improve within five weeks.
Instead, Michele’s pain and disability got worse. By the time she saw her worker’s compensation doctor again, she was in so much pain she couldn’t stand having bed sheets touch her knee. The doctor was shocked at Michele’s decline. He diagnosed her with reflex sympathetic dystrophy (RSD), prescribed a second MRI and a sympathetic nerve block for diagnosis confirmation, and left. Michele was stunned; her doctor provided no information, no treatment plan.
Left in the dark
Luckily, Michele’s parents helped her with research. She felt a mix of devastation, fear and validation as she learned that RSD, also known as complex regional pain syndrome (CRPS), is a neurological syndrome that causes severe burning pain, pathological changes to the bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.
In the coming years, Michele would try dozens of tactics to deal with escalating pain. Invasive procedures, prolotherapy injections, medications, ultrasounds, TENS (transcutaneous electrical nerve stimulation), cranial sacral therapy, sound wave therapy, pool therapy, creams and patches, sympathetic nerve blocks and epidurals, and pain management classes did nothing to ease her increasing pain, depression and fear.
Her medications were countless, including high doses of methadone. To counteract side effects, more were added, feeding a vicious cycle. One produced horrific hallucinations that took months to subside; Michele was left with post-traumatic stress disorder so severe she had to sleep in her parents’ bed.
She experienced extreme fatigue and short-term memory loss. Her personality effectively disappeared. She experienced migraines, nausea and dizziness, and gained more than 100 pounds. She stopped having monthly periods.
One of the worst side effects Michele faced was opioid-induced constipation (OIC). OIC came early for her, a few months into her RSD diagnosis. The more RSD pain she felt, the more pain medication she took. Constipation caused symptoms in her low back, abdomen and buttocks. The only treatment that worked was hospital-administered enemas—painful and embarrassing. During the worst of it she was going to the ER almost every week due to impacted bowels.
Michele was afraid to use public restrooms or bathrooms at friends’ houses because she was afraid of clogging the toilet. This became more and more an issue for her as it happened almost every time she used the restroom. In addition to the RSD causing social isolation, the mere fact of needing to stay home near the bathroom exacerbated it.
During this time, Michele talked about possible solutions with her family, with whom she lived at the time, and almost every doctor she saw who was prescribing the pain medications. ER doctors tried to offer advice, and she was also referred to a gastroenterologist to discuss solutions, but that didn’t work either.
Michele tried laxatives, stool softeners, change in diet, Metamucil, Senakot and other types of medications. She tried but was unable to tolerate the pain of a simple suppository or at-home enema. Nothing seemed to work. For a long time she bounced back and forth between the pain, discomfort and embarrassment of diarrhea, and the pain, discomfort and embarrassment of constipation.
When it got to the point that she was going to the ER because the pain of her RSD increased due to the OIC, she was given Dilaudid for the pain as well as enemas, and sometimes even that didn’t work. Then she would have to deal with the torture and humiliation of manual evacuation. These visits to the ER were not a quick fix either. On top of the wait time to see the doctor, she would often be there all night, screaming from the pain. Says Michele, “I do not use the word ‘torture’ lightly. Eventually the doctors told me that if I didn’t have a bowel movement after three days I needed to come to the ER. This became my life: monitoring my bowel movements and dealing with the pain, discomfort, embarrassment, and frustration, as well as dreading the nightmare visits to the ER.”
Michele fell into despair, and with the depression she made very poor food choices, looking for comfort foods, which only added to the problem. She was living with her parents and confined to a wheelchair. Because of hypersensitivity she couldn’t wear pants or shoes. Most days she never left her bed. She was depressed and isolated.
One of Michele’s doctors referred her to an intensive chronic pain management program. For eight weeks, Michele learned about non-pharmacologic tools such as relaxation, positive thinking, tai chi, acupuncture, Feldenkrais and biofeedback. She even began taking less medication. It was an intense two months of learning to cope.
While she made huge progress, she still felt trapped by her wheelchair and medications. She battled depression and thoughts of suicide.
An “aha” moment
In 2005, Michele checked out the Bay Area Pain & Wellness Center (BAPWC) in Los Gatos, Calif. Its functional restoration program offers a comprehensive, interdisciplinary pain management approach that empowers patients. Michele would learn to break free from a “patient” persona and begin to see herself as a “person” again.
Michele had an “aha” moment during her initial consultation. The medications were not helping. Even with the drugs, her pain level was a staggering 10. And the OIC the medications caused was a problem in itself. Michele went through detox, a grueling, weeks-long process before finally being ready for the six-hour-a-day program.
Each day Michele spent time in physical therapy, occupational therapy, art therapy, wellness class, a doctor’s lecture and group psychotherapy. She was simultaneously exhausted and invigorated.
Michele had her first positive physical therapy experience and, as her tolerance improved, her fears abated, and she made great strides. Occupational therapy re-taught Michele how to perform everyday tasks, and she gained strength and flexibility.
In art therapy, Michele began learning to express emotions without words. Resistant at first, Michele came to embrace the free-flowing technique. She is amazed at the feelings and emotions art has brought to the surface; to be able to release rage and pain has been very cathartic. (She has discovered so much about herself that she continues to attend the class post-graduation.)
Throughout the BAPWC program Michele made progress. By graduation, she could get up and down from the floor without needing assistance. She was working on stairs and walking. Her balance improved and she was able to stay awake all day.
Michele gained a safety net through BAPWC; she had friends and a new family she could lean on. She found a new purpose and identity that made her proud. “This program and the people connected to it saved my life,” she says. “I don’t know if I would be here today without BAPWC, and I don’t say that lightly. They gave me back my will to live.”
And because she weaned off daily narcotics and was able to walk and move around better, OIC stopped being a major problem for Michele. She still has some issues, and she believes she probably always will, but she no longer has to take laxatives and softeners on a daily basis, and it’s been years since she’s had to go to the ER for OIC. At times, she still has pain and problems getting her system back on track, but she is able to manage it without a doctor now.
A new normal
Michele has faced new pain challenges since graduating from the program (including a fibromyalgia diagnosis) but she’s not letting them hold her back. She moved out of her parents’ house and into a low-income apartment. She rarely needs a wheelchair; she is able to travel, to drive, to have a social life. Michele also worked with her doctor to reduce her medications to just two. Her life has evolved hugely.
Trying to accept her new reality meant Michele had to grieve many losses. Each day, her goal is to connect with the good in her life, creating new hopes and dreams for her future. Advocacy and volunteer work have been instrumental in her healing. Michele gains support from online sites like the RSD/CRPS California Support Community and The RSD Living Room. She facilitates the San Francisco Bay Area RSD/CRPS support group meet-ups..
Above all, Michele urges those with pain to stay hopeful: “You must grieve your old self so you can start fresh,” she says. “Try not to focus too long on what you can’t do, but rather make that shift to look at what you can do. There is always something to be grateful for.”
Today Michele has tools and a newfound mental state that ensure she will thrive. “The biggest change in my life is the new sense of hope I have in being able to live a happy life despite chronic pain,” says Michele. “It won’t be the life I originally planned for myself, but that doesn’t mean it can’t be a good life.”