Mary's painful experience sparked a CRPS support group

By Jane Allman
Monday, 27 July, 2020

Mary's painful experience sparked a CRPS support group

At the age of 55, Mary from NSW’s Hawkesbury River region was involved in a car accident that resulted in a broken humerus; the radial nerve was also damaged, as well as the tissue of the chest wall, foot and hands. The injury left Mary in intense pain — even after the bone had successfully healed.

With worsening pain and swelling, Mary’s orthopaedic surgeon recognised her condition as complex regional pain syndrome (CRPS) — a chronic nerve pain condition that usually affects the arms, legs, hands or feet — and referred her to a pain specialist.

Mary was not provided with any information about her condition, so resorted to Google searches to learn more. At her first pain specialist appointment, Mary found herself presented with suggestions of a nerve block and an invasive spinal cord stimulation (SCS) procedure, but she felt she needed more information before making a decision.

“Being concerned about the invasive recommended treatment, I questioned the pro and cons. I declined the invasive treatment as the success rate was questionable, leaving me wanting to at least give the medication a chance to help with the pain.”

Another obstacle was that Mary’s family GP had never treated a patient with CRPS before so was not able to fully understand what Mary was going through.

“My GP didn’t know anything about CRPS and it was not acknowledged until weeks later by an orthopaedic surgeon.”

The following months and years were physically and mentally traumatic for Mary and her family. The pain started to spread into other areas of Mary’s body and the pain became quite horrific.

“Everyone’s life was affected, even my young grandchildren. A combination of chronic pain and medication caused a lack of mobility, fatigue, dizziness, nausea, anxiety and depression. If I rested things got worse and if I moved around it created pain. The suggested physiotherapy was traumatic and I was becoming extremely overwhelmed.”

One of Mary’s turning points was a pain education program at Royal North Shore Hospital (ADAPT program), which has been key to helping Mary improve her quality of life. Now a multidisciplinary health team, along with education, help Mary manage her pain.

“Following an assessment by a team of pain specialists, I agreed to a three-week pain management program, which I found very educational, although some of the program did not agree with my condition. The program gave a full medication review and provided self-management strategies and guidance to achieve goals.”

Mary’s experience with CRPS led her to start her own support group.

In addition to leaving sufferers feeling extremely fatigued, CRPS can affect the joints, organs and major functions of the body. Mary explained that, depending on which areas of the body are affected, different medications are needed. This is another reason why it is essential for GPs to work closely with pain specialists to avoid drug contraindications.

For Mary, one of the hardest things about living with CRPS is the limitations placed on what she can do. Loving family life and travel, Mary has had to learn what her limits are and to accept that pain flare-ups will happen.

“It’s not just the chronic pain that affects me, it’s also the flare ups and the sudden lightheadedness that leave me feeling unwell.

“Over time I’ve learnt the activities that will accelerate a flare-up, and if I overdo it I definitely suffer the consequences. But I think it’s important to continue trying to do things. Once you start declining invites from friends and family, it’s easy to retreat from your social life.”

Mary has found that being referred to a pain specialist is a key part of her care and that multidisciplinary pain management programs can also be beneficial, but she says that self-education is a vital part of understanding the condition.

Although people suffering from chronic pain will have strategies that work well for them, Mary has found hydrotherapy beneficial, as well as a home physio program that involves exercises such as stretching.

Mary emphasised that the connection between the GP and pain specialist is a vital part of care for patients with chronic pain and conditions such as CRPS. This is especially important given the complexity of prescribed medications.

“It wasn’t until my GP started receiving reports from my pain specialist that he began to understand more about CRPS, and this knowledge increased over about a six-year period.

“Many GPs are happy to provide scripts for pain medication, and unfortunately in some cases that’s it.

“I now see a GP that has a good understanding of chronic pain and CRPS — it’s important to feel comfortable enough to tell your GP what you’re experiencing and to feel believed.”

Concerned by the lack of information available to people with CRPS, Mary set up her own support group to help guide others and provide links to sources of information to help people educate themselves about the condition.

“Talking to others going through the same thing makes a huge difference,” Mary said.

“It’s important to know what treatment options are out there and to get a second opinion.

“It has been a long journey to understand and accept my condition. I am now hoping I can help build awareness that there can be a light at the end of a dark tunnel, with the right guidance and communication.”

Mary’s support group — CRPS, Central Sensitisation & Systemic Complications — can be accessed via Facebook.

Top image credit: © Bednarek

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