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FIBROMYALGIA: IT'S A PERSONAL JOURNEY

By David Saul, M.D.

Mary (age 45) came into the office and complained to me of pain in her shoulders, extending down her arms and into her hands. The pain would also seem to travel up into her neck and resulted in migraine headaches. Then Mary felt pain in her lower back, her legs and her feet. Soon, it felt to Mary as if her whole body was in a state of constant pain. This pain came on gradually, without any pre-existing traumatic episode, such as a car accident. I asked Mary about other, more general symptoms, which could be associated with the syndrome called Fibromyalgia. Some of these other symptoms include: fatigue, sleep disturbance, lower abdominal spasms (Irritable Bowel Syndrome), loss of memory, poor concentration abilities and feelings of depression. Mary easily answered "yes" to all of them.

Sara (age 37) was in a car accident three years ago. She sustained a whiplash injury in her neck when her car was hit from behind. Months and months of physiotherapy did not ease the pain in her neck. She couldn't sleep. She was always tired and felt very stiff all over. Sara was sent to specialist after specialist, who did test after test on her. Sara saw a psychiatrist, who put her on anti-depressant medications. She felt worse with the side effects and had to stop. Finally, Sara was sent to one Rheumatologist, who diagnosed Fibromyalgia. Relieved that there was a name for her pain and misery, Sara asked the Rheumatologist the most important question: "What can I do to relieve the pain, other than taking pain pills for the rest of my life?" The doctor just shrugged his shoulders. "I'm sorry", he said, "Fibromyalgia is a syndrome with no known cause and no specific cure."

Rebecca (age 62) had joint pain all her life. "It's growing pains", said the doctors when Rebecca was young. Rebecca did not "grow out of" the pain. Rebecca learned to live with chronic pain in her joints. What that means is that Rebecca simply stopped complaining to the doctors about her pain. After a while, the pain pills stopped working and gave her constipation and stomachaches, instead. No one seemed to understand that she was in constant pain, because her movements appeared pain-free, she was able to walk around without a cane, and she looked "okay". More than one doctor implied to Rebecca that the pain was "all in her head". It was easier for Rebecca to stay away from traditional medical doctors and seek out the services of a naturopathic health practitioner instead.

AT LAST: RELIEF FROM FIBROMYALGIA

These three women were part of the many women (and a handful of men), who answered my newspaper advertisement, "AT LAST: RELIEF FROM FIBROMYALGIA". Mary, Sara and Rebecca represent many of the difficulties and dilemmas, which are shared by women (and a handful of men), who suffer from Fibromyalgia. They were all grateful that I had developed a program to help them on their journey towards recovery. They were also surprised that I was not telling them to do more exercise or take more anti-depressant medications. "Then how can you help me relieve my pain?" they all asked me. I answered, "Follow my comprehensive approach and you will achieve not only pain reduction, but you will also find gains in energy, restorative sleep, better mental functioning and brighter moods." "When do we start?", they asked.

Mary, Sara and Rebecca were among the other seventeen women (and two men) who attended one of my Fibromyalgia group therapy programs. It was a six-week program, with twice a week, three-hour sessions. An ongoing evaluation questionnaire showed that by the end of the program, one-third of the participants were reporting having half the level of pain that they had when they started the program. No, it wasn't magic. No, it wasn't sweat or hard work. No, it didn't cost them anything. Then, what was it?

My program tries to show people who have Fibromyalgia that there are fifteen (and counting) different possible causes for their pain and suffering. A person with Fibromyalgia might have one, two or ten of the possible causes associated with this syndrome. The causes may be different, but the effects on pain, fatigue, sleep and mental disturbances are essentially the same. Therefore, in my program I present all the areas, which are linked to Fibromyalgia. But more importantly, I then go on into detail with practical, rapid and long lasting solutions to correct each one. And, that's where I feel my program has achieved the most success. It's one thing to know what is wrong and why it is wrong, and it's quite another thing to do something about it. Something, which can not only fix it, but make sure it doesn't come back.

VALIDATION AND HOPE

The first thing I do in the group is to validate everyone that I believe they are in pain. They do not have to convince me if their level of pain, nor will I question their integrity. I never imply that they are faking the pain or that it's "all in their heads". Then I go over the fifteen different conditions, which have scientific associations to Fibromyalgia. I only present the information, which has been researched in reputable medical journals. We go over the hormonal, immunological and nutritional aspects of Fibromyalgia. We talk about the psychological and sociological issues, which develop before and after the pain, (i.e. are either the cause of the pain, or caused by the pain).

Many participants in the program began to feel better just by having the validation that someone genuinely believed in their suffering. Many felt better because they needed to know some scientific justification for their suffering. Many felt better because they had the group support and group interaction, which was missing in their lives. Having other people around them to share their experiences with, was very helpful in their personal journey towards recovery.

WHY WOMEN OVER MEN, 10:1?

Many participants wanted to know why the medical statistics revealed that women with Fibromyalgia outnumbered men by ratios of at least 4:1 and up to 10:1. I presented information about hormonal differences between men and women, especially the sex hormones estrogen (for women) and testosterone (for men). One interesting observation about the preponderance of women with Fibromyalgia had to do with the section in the program: Body Language Expressed as Pain. Men are allowed and even encouraged to stand like a "soldier" - chest out, shoulders back and head up. This allows for a proper alignment of the spine, especially the upper spine and neck. Many women, beginning in teenage, turn the shoulders inwards, in a reflex to conceal their breasts. Over the years, this body posturing can potentially lead to upper back and neck troubles, and can be associated with the development of Fibromyalgia.

In the group program, I explore other areas, which can account for the 10:1 difference. Men and women deal with stress, anger, criticism and sex in different ways. These psycho-dynamic differences can lead to changes in the hormonal and immunological systems. Continuous psychological bombardment, without effective strategies for resolution can lead to permanent physiological changes in the body. Fibromyalgia can result because of some of these physical changes in hormone levels, such as changes in levels of cortisone, prolactin and Human Growth Hormone. Inadequate stress relieving techniques can cause alterations in the immune system. This in turn, can alter the body's natural regulation of pain signal enhancement or inhibition. Once again, men and women deal differently to stress. Over the years these stressful responses can contribute to more Fibromyalgia in women than in men.

TELL ME MORE ABOUT THE PROGRAM

VALIDATION AND HOPE (the name of my program) offers women (and a handful of men) with Fibromyalgia the practical tools to provide hope in their journey towards recovery. One major therapeutic component of the program is nutritional. I have found that a nutritional approach, which emphasizes a balance of proteins, carbohydrates and fats - for every meal - can achieve almost overnight results. More than one participant came back after only two days of this dietary regimen to report, "I never felt so good in my life". The physiological benefit has to do with the balancing of certain hormones: insulin, prostaglandins and Human Growth Hormone. When the participants taste DR. SAUL'S TOFU SPREAD (mock chopped egg), they become hooked on the diet.

Meditation and visualization can rebalance the hormonal systems as well as the immunological systems. I present my own meditations for instant pain reduction, which I hand out in DR. SAUL'S MEDITATIONS CASSETTE TAPE. Anger management is an especially important cause and consequence of Fibromyalgia. I present verbal and cognitive skills, as well as physical approaches to instantly overcome an anger response. When anger is nipped in the bud, then the hormonal and immune systems do not go out of balance. The instant reduction in pain is enough to convince many of the participants of the necessity of practicing anger management.

BUT WHAT ABOUT THE "PERSONAL" JOURNEY?

The title of this article is the "personal" journey. Fibromyalgia is not my own personal journey, but it is a personal journey for everyone who suffers from it. All "Fibro" people will vouch that they are not the same people while they are in the "journey towards recovery" that they were before their chronic pain. Many "Fibro" people feel lost. Most are depressed. Some have attempted suicide. To help participants regain some control over their lives I modified one specific and creative skill. I have found that creativity can be of immense benefit along the "personal" journey towards recovery. The creative skill, which I introduce to the group, goes under the heading - CREATIVE WRITING FOR SELF-DISCOVERY. I would like to share with you now this creative writing approach to pain reduction.

Magic wand # 1: The pain/fatigue is all gone and will never come back, provided...

I want you to imagine that you have a magic wand and you are waving it over your head. This magic wand has the power to eliminate all of your pain in an instant. In addition the pain will never, ever return. Sounds great, doesn't it? But there's just one catch.

For the magic wand to work, something must change outside of your personal environment. In other words, in your outer, social network, such as your job, family, city, etc. For this magic wand to work, something must change regarding: where you live, where you work or how you set up your family arrangement.

Put the pen to paper and write whatever comes to your mind. Do not judge and do not think. Just write. It could be one word, one sentence, one paragraph or one page. Just write, don't think and don't cross out any slips of the pen. Forget grammar and spelling, just write. In case I didn't emphasize that I want you to just write, I'll say it again: just write.

Remember the provision: something must change outside of your personal environment.

Magic wand # 2: The pain/fatigue will never, ever go away, but it doesn't matter because...

Imagine once more that you have a magic wand and you are waving it over your head. This time, the magic effect is that the pain will never, ever go away, but it doesn't matter. It doesn't matter because something has now changed inside of you.

In the previous magic wand scenario, something changed outside of you. But, with this magic wand, there is an internal emotional or attitudinal change only. This internal change makes either being in pain, or not being in pain, irrelevant. Put your pen to the paper and begin writing. Again, remember to just write, don't judge. Don't think and don't cross out slips of the pen. Don't care about grammar or spelling, either.

Like magic wand #1, magic wand #2 could be one word or one page, it doesn't matter. This is your creative writing exercise for self-discovery. There are no right or wrong answers, just information from your subconscious.

Remember the provision: there must be some emotional or attitude change inside of you.

This creative writing exercise is very powerful. Many participants are in tears while they do it. Many are nodding their heads up and down with newfound knowledge. Many are smiling with the anticipation of change. And a few are looking at a blank page because they are blocked. They don't want to face or accept something important in their lives. Like I said, it's a "personal" journey.

The information obtained in the CREATIVE WRITING FOR SELF-DISCOVERY exercise can point to some major turnarounds in the "personal" lives of the participants. Can this information be put into use? That depends on the participant. But even if the changes or directions cannot be entirely manifested, I advise the "writer", "Can you at least get close to the answers, or begin a process of working towards the answers?" That suggestion seems to bring things closer to home.

WHERE DO WE GO FROM HERE?

Many participants asked me to write my program down into a workbook, appropriate for home study. They wanted a book, which they could use to review over and over again: the varied stress and anger management skills, the specific nutritional advice, the list of vitamins and supplements to correct metabolic abnormalities, the body language expressed as pain, the many meditation techniques, and more. So I did that. For my patients, I wrote my program down into a spiral bound workbook and called it, "VALIDATION AND HOPE: The Journey Towards Recovery from Fibromyalgia and Chronic Fatigue Syndrome". With this workbook, patients with Fibromyalgia can keep a little bit of "me" with them all the time. This way, I can continue to motivate them by long-distance, to maintain the nutritional, stress management and creative writing skills - to achieve less pain.

With less pain, people with Fibromyalgia can regain control of lives once again. And that's a major achievement. Just ask anyone who has "Fibro".


ABOUT THE AUTHOR

Dr. David Saul is a family doctor, practising in Scarborough, since 1977. He has been conducting group therapy programs for Fibromyalgia and Chronic Fatigue Syndrome, since 1993. Dr. Saul is the author of two workbooks: "MAGIC PEN: Creative Writing for Self-Discovery" and "VALIDATION AND HOPE: The Journey Towards Recovery from Fibromyalgia and Chronic Fatigue Syndrome".

Dr. Saul is available for consultation at his office: (416) 298-1303.

Dr. Saul's books are available direct from him - Email Dr Saul for information.


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