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My Life-Enhancement Journey Coping with Fibromyalgia

by Jacquie Durand(more info)

listed in fibromyalgia, originally published in issue 229 - April 2016

A Journey Of Life Enhancement - Understanding My Beast of Burden

I have endured chronic pain for as long as I can remember. In school, it was brushed off as “growing pains” because doctors couldn’t find the root of the cause. Later, it was a “weak constitution”. Then my employer accused me of “faking my pain”. And of course there was the standard adage, “it’s all in your head”.

In 1998, I began my journey of life enhancement. As a freelance travel writer/photographer, I was looking for a way to continue this work I had come to love and manage the pain at the same time. I quickly discovered there was very little knowledge about the various aspects of this condition and started researching my symptoms. 

“Nothing in life is to be feared. It is only to be understood.”

Marie Curie

Gone now are the days when I could just jump out of bed to greet the new day. After a very minor car accident in 1998, I began experiencing ever more severe pain throughout my body that never seemed to go away. About three months after my accident, I presented to a Rheumatologist with widespread pain, stiffness and fatigue to finally receive a diagnosis of fibromyalgia. Aside from the constant pain, the hardest part in the first year, for me, was getting used to the fact that my life would never quite be the same again. It was a very difficult grieving period for me.

Getting up in the mornings can still be a real challenge. I can go for weeks, even months, with relatively little pain. Then suddenly, I’m hit with a flare that (I can only imagine) feels like being run over by a transport truck. In addition to the already widespread, constant pain that comes with this monster, I have also developed frequent bouts of tendonitis. I sometimes have difficulty walking without a cane but I refuse to give in. And so, I force myself to get up and go to work every day, just trying to keep the beast at bay.

I quickly discovered that there was very little knowledge about all the various aspects of this condition and started researching my symptoms. Still in a quandary and suffering with the pain, fatigue, and hypersensitivities to lights and smells, I began a series of appointments - family physician, Rheumatologist, pain specialists to mention a few - and feeling like none believed what I had to tell them. I was tested for everything from Flu to Lyme disease to Lupus. A follow up with my family physician finally gave me a name for my problems - fibromyalgia. This was followed by more discouraging news, “no known cure”.  However, just having a diagnosis brought some small relief.

Fibromyalgia comes from the Latin fibra (fibre) and the Greek words myo (muscle) and algos (pain).[1] This syndrome is a disorder, not a disease, with unidentified origins described as a “central sensitization syndrome”. Its defining symptoms are diffuse body pain, overwhelming fatigue (in more than 90% of patients), sleep disturbance which affects daytime functionality and cognitive abilities, mood disturbance, and other variable symptoms. 

Although found in all ages, statistics show that fibromyalgia is far more common in women than it is in men. Diagnosis generally occurs in individuals between the ages of 20 to 50 years, even though onset can occur in childhood. According to the 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia,[1] it is estimated that approximately 2%-3% of Canadians are affected, with females affected between 6 to 9 times more commonly than males. The pain may be intermittent, making it all the more difficult to diagnose, but becomes more persistent and intense over time. Severity may be driven by weather and/or stress. Cold and humidity tend to be associated with increased symptoms.

There is evidence that genetic factors may play a role in the development of fibromyalgia. Other researchers have the theory of a “central sensitization” (a lower threshold for pain) due to increased reactivity of pain-sensitive nerve cells in the spinal cord and/or brain. Stress is often associated with ‘flare-ups’, as coping mechanisms are sometimes lower in “Fibromites”.

The differing methods of diagnosis from when I first began this journey show that early diagnosis by a primary care professional removes the focus from costly investigations and unnecessary tests, and brings the attention back to symptom management and improvement of functionality.

As there is no single test to fully diagnose fibromyalgia and also some debate over essential criteria, the widespread pain index (WPI) and symptom severity scale (SS) are now used in place of the tender point testing that was used under the old (1990) criteria. The WPI accounts for up to 19 general areas in which the person has experienced pain in the preceding two weeks. The SS rates the severity of the person's fatigue, unrefreshed waking, cognitive symptoms, and general somatic symptoms for more than three months, where no other disorder explains the pain.

My Life - Enhancement Journey

Medical professionals do not know exactly what causes this condition and so they have no clear answers to give us the relief we crave. Because there is no universally accepted treatment or cure for fibromyalgia, treatments are mostly trial and error for each patient. It would seem that everybody requires a different method of symptom management. Treatment generally includes prescription medication and behavioural intervention and exercise. Indeed, integrated treatment plans that incorporate medication, patient education, aerobic exercise and cognitive-behavioural therapy have been shown to be effective in alleviating pain and other fibromyalgia-related symptoms. Cannabinoids are also being used and have been found effective in pain, mood and sleep management. Anti-depressants, anti-seizure, opioids, and human growth hormone, as well as muscle relaxants are just a few of the many medications that have been tried. The use of Nonsteroidal Anti-inflammatory Drugs (NSAIDs) is not generally recommended. 

private outdoor massage therapy

For alternative management, massage is often an effective tool. Choosing a Registered Massage Therapist (RMT) is much like buying that perfect pair of shoes that never pinch or make your feet tired. Be proactive. Remember, that first interview with an RMT is as much for you to decide if they are a good fit for your needs, as it is for them to decide if they can treat your condition. Be sure the RMT has experience working with people with fibromyalgia. Otherwise, your much anticipated relief from massage could turn into another flare. Follow your therapists’ instructions after the massage – possibly some light exercises or stretching to ease your pain. Be sure to re-hydrate after your massage – follow up with a long warm bath or hot shower and drink lots of water to help complete the ‘toxin removal’ the RMT started.

Another good alternative is a warm water aquatic program, which can be extremely beneficial for increasing movement and flexibility without the added physical stress of body weight. This method of exercise has been used for many years for seniors dealing with arthritis, joint replacements and other orthopaedic and mobility issues. These aquatic programs frequently utilize a salt water solution rather than the typical chemicals found in everyday swimming pools as the salts increase buoyancy. In fact, it is probably easier to find a program within a senior’s residence than in a traditional community centre.

Physiotherapists can also teach you how to stretch properly so as not to injure yourself. Janice Eveleigh of the Baywood Physiotherapy Centre in Ajax, Ontario says: “In my years as a physiotherapist I’ve treated many people with fibromyalgia. I’ve seen fibromyalgia become more accepted as a diagnosis amongst GPs and insurance companies.” She further states, “Studies have consistently shown that by improving the level of fitness in fibromyalgia sufferers, we can improve pain tolerance, energy levels and functioning.”[2]

While many I have met with fibromyalgia have stopped working, I have personally found that the best thing for me is to keep going. Though I had to start very slowly, with a good personal trainer and regular aquatic classes, I was able to achieve a place in my life where I could incorporate mild-to-mid level cardio workouts. These workouts helped to ease some of the muscle spasms and that sense of totally debilitating exhaustion. I have additionally found that light, gentle stretching and exercise can induce higher energy levels. One other method I have incorporated into my day is a series of short mindfulness meditation (about 5 minutes as needed), in order to bring about a ‘mind over matter’ result to manage my pain until I can get away for a walk and stretching out of my muscles.

As indicated earlier, I am a freelance travel writer/photographer. Travelling with long hours every day in the field brings a whole different set of challenges as the extra exertion may also induce a flare in symptoms. I have found that with careful planning, I am able to appreciate most of the same destinations as people without fibro.

As I travel to different lands, meeting with and getting to know some of the local people, I understand how very few differences we have. I have discovered time and again that this beast known as fibromyalgia is worldwide and remains a mystery to most. Discussions with other “Fibromites” inevitably turns to how we have learned to make our lives and travels easier.

Simple Packing Tips

1.         Pack as light as possible – not all flight attendants are willing to help when it comes to lifting a carry-on bag into the upper bin;

2.         In packing light (read as packing less), you are less likely to leave something behind when checking out of your hotel;

3.         Find out what your hotel provides in the way of toiletries – you may not need to bring along those additional products or dryer;

4.         If you require special products, be sure to carry them in smaller packaging (bottles or zipper bags);

5.         Pick a colour pallet – this will make it much easier to keep it light and still have the option to mix and match for more variety;

6.         Wear your heaviest clothing when travelling or use vacuum bags to reduce bulk in your bag;

7.         If you are going to require a bag on your daytime outings, ensure you have a light-weight backpack with both waist and chest straps to help keep your load balanced and create less strain on your already stressed body;

8.         Photography equipment should be kept as simple as possible with the most comfortable carrying methods available, such as a field vest to accommodate filters and an additional lens for quick access.

Stretches, Exercises, And Other Necessities:

1.         Research simple yoga stretches – I found a small, easily packed book for quick reference when I’m travelling;

2.         Check out the hotel gym if you are in the habit of using exercise equipment – don’t forget to bring proper footwear and clothing for your workouts;

3.         Pack an aromatherapy spray for a sleep aid or for a relaxation aid – make sure it is a tried and true aroma for you so it doesn’t do the opposite of what you need;

4.         If you want/need white noise to sleep, try setting the room’s clock radio “off” station to give pure static, and ask the front desk for a wake-up call or use your cell phone (no need to pack an alarm clock)

Even though I’ve been assured many times that this condition is neither degenerative nor fatal, the chronic pain of fibromyalgia is both pervasive and persistent. In fact, studies have shown that most people with fibromyalgia report that their symptoms do not necessarily improve over time. It just becomes a “normal” part of their everyday life.

Overall  Fibromyalgia  Symptoms

Widespread Pain:

Pain may vary in location and intensity from day to day and may be altered by weather or stress. Cold and humidity are often associated with increased symptoms.

Somatic Symptoms {include, but not limited to}:

  • Cognitive dysfunction
  • Fatigue / unrefreshed sleep
  • Irritable bowel syndrome
  • Lower urinary tract symptoms
  • Migraine headaches
  • Mood disorder
  • Myofascial pain
  • Temporomandibular (TMJ) pain

Helpful  Links:

References

1.         Canadian Guidelines for the Diagnosis of Fibromyalgia:  a comprehensive, evidence-based report written by a panel of experts from across Canada, and is endorsed by both the Canadian Pain Society and the Canadian Rheumatology Association.

2.         Janice Eveleigh: is a physio-therapist at the Baywood Physiotherapy Centre in Ajax, Ontario Canada.

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About Jacquie Durand

Jacquie Durand writes from an experiential perspective about her understanding of and coping methods for fibromyalgia. Jacquie Durand is a freelance travel writer/photographer who is a member of the Travel Media Association of Canada (TMAC). She writes about, and provides photography for, a variety of travel destinations. She resides in Ajax, Ontario Canada and may be contacted via jacquied96@gmail.com

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