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Living with chronic pain: The long road to getting a diagnosis

Dependency. Hand-stitched fabric, Barbara Carter.

KJIPUKTUK (Halifax) – Like most everybody else, at one time I never gave a thought to living with chronic pain.

Not until June of 2010, that is, when I experienced a repetitive workplace injury. I went through three months of physiotherapy, an examination by an orthopedic specialist and sent back to work, with the advice the pain would resolve itself.

I knew nothing about navigating the world of WCB, of modified work duties, of never going back to the person I was before the injury.

I now know that many people live with chronic pain and I’ve decided to share my personal experience of what it’s like. I hope it may help others out there in what they might be going through. You can read part 1, The pain that never ends, here

I was sent back to full time duties despite the fact I still experienced this unexplained pain. Eight months later in 2011, I went back to my family doctor and asked for a referral back to the orthopedic specialist I’d seen the previous year.

The orthopedic doctor still had no answer why I still experienced pain. I pushed for more, asking for a referral to a chiropractor since physiotherapy had not been able to resolve the issue. He agreed and WCB received his report and approved for me to see a chiropractor.

Four months later, while still being treated by the chiropractor, and still no resolve in pain, I began experiencing left “tennis elbow” issues. WCB approved physio treatments for my left arm and combined this injury to my previous existing claim.

I attended physio three to four times a week, the chiropractor once or twice a week and still went to work on modified duties.

After three months of not improving, further medical testing was done, looking for a medical explanation such as arthritis, lupus, etc. Then the WCB sent me to a physiologist for pain management.

Meanwhile, I’m frustrated in not being able to understand what is “wrong” with me, why I am not healing, why I’m still in pain. My future seems bleak.

I have constant thoughts of stepping out into traffic and ending it all.

Life was exhausting; the never-ending appointments. Wanting to get better, wanting to go back to who I was before my injuries. My exercise program at physio is decreased in February due to fatigue and increased pain, my work schedule is cut to two shifts per week. In March I see a rheumatologist and she rules out lupus. Again, I receive no medical explanation for my pain and why I’m not improving.

How to explain what is wrong with me? I look fine; no obvious sign of injury or illness. So how does anybody understand what they cannot see?

I had feelings of not being good enough, or not being able to do my job as I had been able to do before being injured. I was afraid of facing a life sentence of pain. I worried about my future and how I would survive.

I believe others make judgements about me, assumptions such as why doesn’t she just toughen up, she should be able to do this, there’s nothing wrong with her, she’s probably faking it.

I’ve heard these comments said about others injured in the workplace, so why wouldn’t they also say it about me?

I continue with physio and chiropractor and now start seeing another psychologist. It is this therapist who begins educating me on chronic pain and suggests that I no longer have a physical injury. That my injuries have healed.

This threw me into total confusion. It going against everything I previously believed and understood about pain.

This psychologist gives me reading material to take home and when I read what she’d given me it described everything that’s happening to me and I cried and cried for hours trying to come to terms with what it all meant.

During this time there were also two occupational visits made to my jobsite to work out modifications for me. One made by my employer and the other from an occupational therapist not connected with my work. I began following the recommendations for modifications at work, still only able to maintain two shifts a week.

In late June 2012, after six months of not knowing what was wrong with me, I was sent to see a physical medicine and rehabilitation pain specialist. An anatomical diagnosis could not be determined for my pain and he confirmed what the therapist had also been telling me. I was beginning to come to terms with the fact that my life would never be the same again.

Until my chronic pain diagnoses I’d never heard those words describing changes in the brain in response to repeated nerve stimulation/pain. The brain responding as if the body is still injured.

It’s a change in brain wiring, a word we hear a lot of these days: plasticity, which is the ability of the brain to change easily, or central sensitization. Pain modifies the way the central nervous system works and a patient actually becomes more sensitive and gets more pain with less provocation.

It was then determined that I fulfilled the WCB requirements for chronic pain.

At this time it was decided I would stop physiotherapy and chiropractor treatments and that what was best for me was to continue seeing the psychologist for further education and pain management.

An agreement was struck in how many hours a week I could work at my job and WCB started paying benefits.

The recommendation was also made for two types of medication for me to try: Anti-seizure or antidepressant medication.

Not only did I struggle with this diagnosis but my family doctor at the time had difficulty understanding it also. I had to educate him on central sensitization and chronic pain. This leads me to believe there are many doctors out there who are uneducated in proper chronic pain treatment.

I know that I am probably considered “lucky” by many that it only took two years to get a diagnosis and some form of closure, some financial stability, but the reality of adjusting to living with pain still takes its toll.

Next month I will talk more about living with chronic pain and what it does to your mental health.

Barbara Carter is a visual artist & writer living in Nova Scotia. She writes about her life experiences, sometimes dealing with difficult subject matter. Her interest is in healing from the past and living well in the here and now. www.barbaracarterartist.com

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