Navigating Canadian health care and chronic pain

 Health care in Canada is deteriorating, and the cause of this is political. The public’s need for reduced taxes---which is where funding for social programs comes from---and the politician’s need to get elected, means hospitals and their staff do without necessary resources. The result:  doctors and nurses are overworked;  patients, who found it hard enough at the best of times to get the attention they needed,  are left facing an insurmountable headwind of tired, cynical health workers, and a heightened level of stress.

My mother was a nurse. Were it not for her inside knowledge, I might not have had the care I enjoyed  through a series of seven major surgeries starting at age nine. She told me back in the early 80s, “You have to fight and scrape for everything you get in health care.”  It was true then, and it’s even truer today.  When you fall ill, getting answers is a little like stepping into a Robin Cook novel.  Many of you have your own medical mystery.  I hope that relating this story will assist others in getting the attention they need.

This recent problem reared  its ugly head in 1994, and ramped up to an unidentified chronic pain condition that left me barely able to walk,  and experiencing regular debilitating pain reminiscent of viral meningitis---extreme headaches, stiff neck, nausea, vomiting, inability to sit or lay down because approaching horizontal exacerbated the pain twofold.

I’d had viral meningitis in 1992, and in the mid 80s was diagnosed with pseudotumor cerebri---a build-up of spinal fluid that went undiagnosed for a year and a half and caused  extreme head and back aches. The diagnosis for that came when inter cranial swelling caused the optic nerve to swell and blood vessels in the eye to burst.

In 2007, after a more insidious three day bout with pain and no sleep, I went to emergency in the small town of Tofino, where I was living. The doctor dismissed me entirely, told me the dizziness and numbness were due to panic and shallow breathing (I was panicking about the pain). Subsequent research into this doctor indicated he had a very hard time relating to male patients: everyone I spoke to had similar experiences, although women and children liked him. His advice to me was ‘tough it out”. Men have been hearing this phrase their whole life, and it can be a damaging thing to hear. 

After this debacle I was able to find a relatively capable, caring GP who explored my past conditions, ordered a CAT scan, a nuclear scan, and referred  me to a muscular-skeletal pain specialist.  The tests were negative. The specialist was depressingly inept. Mainly, he sat with a closed folder on his lap, shaking his head. He put his hands on two or three times, but had zero input, and recommended no alternative approaches. Although several doctors  prescribed many pain killers and meds, nothing lessened the pain an iota, including alternative therapies, heat, ice, yoga ,or anything else.

Despite having no answers, most doctors will not tolerate patients doing their own investigation.  It’s understandable that  MDs who hear countless self-diagnoses would begin to roll their eyes, but a patient isn’t left with much else. In fact, it was constant pursuance and elimination of possible causes that led to a diagnosis and treatments that allow some relief and  management.

It quickly became obvious that to get proper care, a move from Vancouver Island to Vancouver was necessary. If nothing else, better access to alternative treatments might help. Finding a GP was difficult, and walk-in clinics are suspect of anyone claiming to have pain---they assume you’re looking for Oxycontin. Clinics won’t entertain patients like that, and are happy prescribing salves and Viagra all day long.  Bedside manner in these clinics is almost nonexistent.

After dozens of phone calls a GP was secured, only because the staff at this particular clinic was sympathetic.  Failures at walk-in clinics emphasized the need for an advocate---an obviously honest person exuding integrity to speak on the patient’s behalf---to explain to the doctor that the condition is real, not imagined.  This step was crucial to being taken seriously, and I recommend it to anyone who hasn’t tried it.

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 Renko.styranka@gmail.com