By Jenny Picciotto.
When I read a study about the spread of CRPS, I was reminded about something I really don’t like to think about. I wanted to push it out of my mind, but with a colonoscopy screening coming up it was a good reminder. It was motivation to find out how to reduce my risk.
They recommend that:The study reported some alarming statistical results. It was published in the Scandinavian Journal of Pain in January, and was titled “The risk of pain syndrome affecting a previously non-painful limb following trauma or surgery in patients with a history of CRPS.” [i] The authors reviewed the history of 93 CRPS patients at their clinic over a 20 month period. Overall, 19 of them (20%) experienced a spread in another limb. Out of those 19 patients, 15 had a documented “inciting event” such as an injury or surgery in a previously pain-free area, and 4 did not. There were a total of 20 individuals in their study with a documented “inciting event”. 15 of these 20 people (75%) developed secondary CRPS. While the authors recognize that this 75% statistical finding cannot be generalized, they did conclude that their results “strongly suggests that patients with a history of CRPS may be at considerable risk of developing secondary CRPS.”
“Patients presenting with new extremity injuries or requiring surgery on another extremity may benefit from preventative therapy or early intervention if signs of secondary CRPS develop. When deciding whether to proceed with any elective extremity surgery, knowledge of and proper counselling about the possible increased risk of secondary CRPS would be beneficial.”
So what are “inciting events” and can we avoid them? Injuries, broken bones and surgical procedures are known triggers for CRPS, so it makes sense to do everything possible to avoid them. Elective surgery is usually discouraged, although it may be considered to correct an underlying problem if it is driving symptoms. Surgery could be necessary in the event of an illness, accident, or emergency. And while we can say no to elective surgery it’s not so easy to prevent injuries. Then there are common medical events like a tooth extraction, root canal, blood draw, or other routine procedures that could trigger a spread. What follows is a summary of what I learned, including some practical tips about things we can do on our own, and a discussion of medical interventions you could discuss with your doctor.
Knowledge is power, and unfortunately much of the medical community is sadly in the dark about CRPS. Arming yourself with facts and educating your care providers may be your best protection. Keeping a one page summary of your condition and treatment plan to give to any medical professionals you interact with is a good start. You should including the name of your pain management physician, who can consult with your other providers. Put one in your wallet in case of emergency. You can also keep a file of important research and treatment options you can refer to when discussing your treatment plan with your doctors. Simply knowing what could put you at risk puts you in a better position to make choices about your activities and your medical care.
The RSDSA can help. There are resources like informational brochures that you can download or order on their website. They have an extensive library you can search for information to bolster your own, and your doctor’s knowledge. They also sponsor two accredited continuing education courses for medical professionals, “A Comprehensive Overview of Complex Regional Pain Syndrome” and “An In-depth Look at CRPS: From Diagnosis to Treatment.” These courses are available through the American Academy of Pain Management. The more our doctors know about CRPS, the better they will be able to help us navigate our health care.
There are also practical things you can do in everyday life to keep your body healthy and reduce environmental risk. While it is never easy to exercise with pain, doing what you can to remain fit and strong can reduce the risk of an accident. You may be able to find new strategies to manage tasks that have become challenging and might put you at risk. Consider using a wheel chair through the airport or installing special equipment to help you in and out of the bath. Ask your phlebotomist to use the smallest needle possible when you have blood drawn. Take whatever precautions you can to keep yourself safe.
Vitamin C is a simple and affordable preventative measure. It has been shown to reduce the risk of developing CRPS, and might even decrease pain in established CRPS.[ii] According to a recent report, “Vitamin C is currently established as the most efficacious preventative therapy for the development of CRPS.”[iii] Another survey of studies using Vitamin C following surgery determined that “Vitamin C appears effective in preventing post-operative CRPS I,” and recommends taking 500 mg for 50 days after surgery.[iv]
The article “Perioperative management for patients with Complex Regional Pain Syndrome” [v] was published in Pain Management Research in 2012. The authors complete a review of preventative measures and offer some recommendations. These include taking time to evaluate the risk of a surgery against its potential benefit, postponing surgery until symptoms are well managed, and taking vitamin C after surgery. They discuss the value of regional anesthesia, and recommend it be started before and continued after the operation when possible. They stress the possibility of a flare after surgery, and recommend several medications such as clonidine, ketamine, gabapentin and methadone to manage increased pain levels. Other recommendations include physical therapy such as desensitization and pain exposure, and Cognitive Behavior Therapy which can help reduce pain by lowering stress levels.
A case study at Drexel University in 2012 concurs that there is a significant risk for patients with CRPS who have surgery.[vi] They note that “In general, recommendations for anesthesia in CRPS patients requiring surgery include sympathetic blockade or intravenous regional anesthesia as well as sympathetic blockade in conjunction with lidocaine.” While these measures are reported to be effective for people with “localized disease, they have often been ineffective in patients with severe refractory CRPS.”
In this study, “Ketamine as an Adjunctive Anesthesia in Refractory Complex Regional Pain Syndrome Patients: A Case Series,” 25 patients with long standing severe CRPS were given ketamine infusions during surgery, and a series of booster infusions after. They all “returned to their preoperative pain level following surgery.” The study concludes that “ketamine … was successful in reducing pain and blocking spread in severely affected long-standing patients.” The infusion protocol, which includes the use of clonidine, midazolam and an anti-nausea medication, is provided in detail.
After doing my research, I was ready to meet with my gastroenterologist. I brought my one page history and treatment plan, along with brochures I got from the RSDSA. He had never heard of CRPS before, but was interested in learning about it. I explained that I was concerned that having a colonoscopy screening might trigger a spread, and asked if his team could use ketamine during my procedure. After talking to the anesthesia department he told me they could.
On the day of the procedure, I brought my history, brochures, and a copy of the research “Ketamine as and Adjunctive Anesthesia.” I spoke directly with the anesthesiologist who said it was no problem for him to accommodate my requests. The entire staff was interested in reading the literature I left with them. After the procedure, I began taking 1000 mg of Vitamin C every day.
While it can be frightening to think about the possibility of a spread, it’s reassuring to know what I can do about it. I feel empowered to take an active role in my own care and make informed decisions about medical procedures.