Navigating Canadian health care and chronic pain

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Recurrent meningitis was ruled out. That condition comes as a result of bacterial meningitis, the deadly form of the disease.  Then a couple of things happened that began to put together the pieces of the puzzle.

The only exercise possible had been walking, even if only a very short distance. At one point that wasn’t possible either, due to stabbing pain in the right knee. A private physiotherapist diagnosed the knee pain as tension due to scar tissue in the ankle. She explained that Myofascia--- a web-like structure that covers all the muscles and organs---  can tug from one body part and refer dysfunction and pain to another. She performed what she called "simple fascia release" on the ankle, and the knee pain went away immediately.

Two years later, when the overall condition worsened, an elite athlete and yoga instructor posted on Facebook about a Myofascia release conference in Vancouver in 2012. Chronic Myofascia Pain (CMP) is widespread spasms rooted in triggers set off by injury or trauma, such as an accident or surgery.  These spasms can cause severe pain, numbness, digestive problems, and dizziness, among other symptoms. Experience with the physio indicated this may be worth pursuing, since scars covered the body from chest to ankle.

Chiropractors, an osteopath, and a kinesiologist knowledgeable in this condition brought some mental and physical relief. The GP was now able to prescribe meds that compliment CMP. As a child, I’d had 13 incisions to remove bone tumours.  The diagnosis was that the trauma to the Myofascia had caused widespread tension, setting off triggers that compounded on itself. Treatments included Myofascia release and bodywork on the scar tissue.  There is also a program for patients to assess and release triggers as they arise.  A graphic interactive chart fully explained triggers and where they refer pain. Using this method, the condition was affirmed. This is not an unknown or rare condition, although it exists with many degrees, but it was not even hinted at by my muscular-skeletal pain specialist.

Since Myofascia is a three dimensional web throughout the body, covering muscles and organs, as well as the spine and brain in the form of dura mater, symptoms mimicking meningitis have been documented.

The worst part of any health concern is not knowing what’s wrong. It naturally creates stress and panic, which compounds the pain.  If your doctor isn’t taking you seriously, you need to take steps to take your life back.

The lessons learned are:

-          Don’t assume your doctors know everything, or that he/she has your best interest at heart.

-          Despite a physician’s distaste for a patient’s own investigations, be active in your own search.

-          Take an advocate with you to your doctor, to vouch for you.

-          There are organizations to help you navigate your pain, like  PainBC or  People in Pain Network (PIPN), which can offer support.

-          Doctors will weigh a medication’s side affects against your condition, but this doesn’t mean you can’t ask questions of your doctor and pharmacist. If your med is causing difficult side effects, perhaps there is another one that can help.

-          Do everything you can to give your body the best chance to feel as good as it can: adjust your diet to keep your weight down; try doing what exercise you can if your doctor and therapists say it’s okay; care for yourself---get out of your housecoat and wear something you feel good in, get massages if you can afford it;  treat yourself to things you enjoy when you’re able; learn to meditate. Meditation is not a cure, but can help deal with pain; watching or reading comedy can help tremendously. You can find all your favourite shows online, as well as stand-up comedians and roasts.

-          Find a way to communicate to friends and family how you feel. Some will understand, others won’t. Men find it difficult to admit they can’t cope---we’re supposed to be able to handle everything, so admitting we’re at the end of our tether is hard.

This is one story. I want to hear yours for a book I’m compiling. Send it  in 1000 words or less to [email protected] 







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