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|Living with pain|
|Written by Gillian Smith|
|Wednesday, 06 November 2013 10:18|
For most people, dealing with a sore knee or an annoying headache could result in days of discomfort that interrupts lives. For some, those are the easy days.
Jodi Pinkham, 22, has suffered from complex regional pain syndrome (CRPS) for over eight years. On good days, her pain will be a six or seven on the pain scale of one to 10, but on most days the pain is constantly at a 10.
Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), is a neuroinflammatory syndrome characterized by pain in one or more limbs or ankles, feet, abdomen or hands. The pain typically appears after a traumatic event, such as a broken bone, sprain, sports injury or bad fall. It is more common among pre-adolecent and adolescent girls than boys.
In the eighth grade, Jodi had consistent knee pain that interrupted her daily life. She went through six weeks of physical therapy in order to stop the pain, to no avail. In an attempt to find a solution for the pain, Jodi underwent knee surgery for a misaligned kneecap. After physical ther- apy, she still felt no relief. In fact, the pain got progressively worse. After searching for pediatric pain centers, Jodie’s mother, Sue Pinkham, found the Boston Children’s Hospital pain clinic.
“It’s overwhelming as a mom to know your daughter is in pain and there is nothing you can do to help her,” Sue said. “It was a struggle to get into the clinic, but we explained our situation and were able to get an appointment.”
After a few months of testing, Jodi was finally diagnosed with CRPS. The cause of CRPS is unknown and overuse injuries, trauma, psychological stress, nutritional factors and hormones are possible contributors. It is not life threatening, but it can be chronic and can spread to other parts of the body. It is highly disruptive and can lead to as many as 25 percent of school days missed for the child suffering from CRPS.
“We were told not to go home and Google it, but of course we did,” Sue said. “The surprising thing is the first documentation goes back to the Civil War and was called phantom limb pain.”
Once Sue and Jodi had the diagnosis, the next step was to figure out how to deal with the pain. Sue said doctors tend to avoid narcotics because they want to avoid addiction. Shortly after Jodi’s diagnosis, Boston Children’s Hospital opened a pediatric pain rehabilitation center and Jodi was one of the first four children to go through the multidisci- plinary program. The program had patients doing physical therapy, occupational therapy, psychological therapy and group physical therapy.
“It was both the best and the worst thing for her,” Sue recalled. “She was able to meet others who understood her pain and was able to talk with them and bond with them. It also made her disease a reality.”
Because Jodi does not wear a brace, have crutches or a cast, Sue said it is difficult for others to understand her disease and the pain she is suffering from. On the McGill Pain Index, which rates levels of pain from bruises and frac- tures to childbirth and amputation, CRPS is rated at 46.4. There is nothing above it.
“It is the worst pain of any medical condition and there is so little known about it,” Sue said. “It took over two years, three unnecessary surgeries and 18 months of physical therapy to diagnose her with CRPS.”
Jodi attended Simmons College for two and a half years and succeeded academically but her condition pre- vented her from being able to finish her college career. She has recently had two surgeries to fuse her skull to the C2 vertebrae and another to fuse the C4-5 and C5-6 vertebrae. Because the disease affects her connective tissue and prevents it from stabilizing, she has undergone the surgeries with the hope of stabilizing her spine. She may have to undergo yet another surgery at the end of this month.
Because so little is known about the disease, Sue decided to raise money for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA),
the organization that works to find a solution to CRPS. At first, she started holding yard sales with items from her own home and word quickly spread around town. Sue’s mother, Norma Johnson, mentioned the yard sales to the people who go to TOPS at the Senior Center and passersby would stop and ask what she was raising money for. Once they heard about CRPS and the RSDSA, many residents offered to drop off some of their unwanted belongings. Thanks to the garage space her mother lets her use, Sue has been able to collect enough items to raise a significant amount of money.
“The best place I’ve found has been the Duxbury Mall,” Sue said. “I’ve had so many people asking me if I’d like to take their dolls, old furniture, everything.”
Sue said she has been overwhelmed by the amount of support she and her family have received with the yard sales. She said a lot of the credit must go to Jennessa Seaman and her mother Carol. Jennessa also suffers from CRPS and has helped out at every yard sale. With two annual yard sales over the last four or five years, Sue has raised $20,000 for RSDSA.
“That’s a lot of 50 cents,” Sue said. “I’m just a mom with a child that suffers and we are trying to do what we can to help her out.”
November is CRPS Awareness Month and Sue has already started collecting items for her spring yard sale. Jodi is not the only person in Duxbury who suffers from CRPS and Sue said her goal is to increase awareness about the disease so that other families do not have to go through what her family went through.
“If we can save just one family from going through all the unnecessary surgeries and therapies and help figure out how to deal with this disease, that is good enough for us,” she said.