In June I shared with you the announcement of The Fibromyalgia Wellness Project, a study to see if Fibromyalgia sufferers can easily discover simple modifications in their patterns of daily living to markedly reduced their symptoms. It was delayed due to scheduling and resource issues, but on Friday I received the announcement that it is up and looking for participants.

Dear Friends,

I am pleased to announce that the Fibromyalgia Wellness Project is now up and running and ready to receive participants. This is a research project sponsored by the National Institute of Arthritis, Musculoskeletal and Skin diseases, National Institutes of Health. Its purpose is to evaluate a new web-based self-management program that aims to help people with FM discover ways to reduce symptoms and improve health through a completely personalized self-monitoring approach that takes no more than 5 to 10 minutes per day.

In using this program you will create your own personal database of symptom patterns and self-management strategies that will be analyzed by the project’s proprietary analytical methods. After sufficient use (depending on how frequently you use it–we recommend at least four times per week), the program will provide you with personalized feedback about strategies that lead to reduced symptoms for you. The feedback you receive will be derived from your own personal inputs over time, which is why your on-going participation over several weeks is needed. This allows you to experiment with different strategies and lifestyle changes (e.g., bed times, meal times, self-help practices, exercise, stresses, herbs, supplements, medications, and more) to find out what works best for you.

Please go to http://www.fmwellness.org/index.htm to learn about the project and sign up.

We will be continuing to upgrade and refine the site in the coming months. I hope you find the project beneficial, and welcome your participation.

Best regards,
William Collinge, PhD, MPH
Principal Investigator
The Fibromyalgia Wellness Project
http:www.fmwellness.org

I remember the shock I felt when I first realized there is an emotional component to my pain. I have always been a joyful person. I smile often, and it is the kind of smile I feel deep in my heart. Despite everything I have been through and live with daily, I have always felt fortunate and happy for my life. I knew I had unresolved anger and resentment, that is how I found myself in therapy, but I had no idea that I had been physically storing it in my body for years.

It was several years ago now that my therapist tried to help me resolve my physical pain by dealing with my suppressed emotions. Ironically, her recommendation to me was to write. She believed that through the process of writing, my muscles would begin to let go of everything they had been storing. Unfortunately I did not get very far with her. Maybe I was not ready to hear her and understand then. Maybe the time was not right. But today as I sit here writing about it, I am so much more aware and accepting of where she was trying to guide me.

My muscles are full of emotions I have spent the last 40 years avoiding.

The pain is stored there because that is how I unconsciously chose to process it. I stuffed it deep down inside to avoid facing it, but it doesn’t just disappear, it simply manifests itself into a different kind of pain.

My muscles are inflamed and toxic because I did not have the skills to manage and deal with the crisis in the moment. Who does have the skills? They are not easy to acquire. I still do not have them, but I am working towards it. It may take me the next 40 years, but at least I am now aware.

Healing is not a simple process.

First we must really come to terms with the source of our pain. For the purpose of this post I am focusing on emotional pain, but as we all know there are many other components to our pain (trauma, infection, toxin, etc.) that make this process even more complicated.

So where do we start?

Again, there is no easy answer. Years ago I started in the most logical place, therapy, and yet it turned out not to be my actual starting point. I had years of stagnant suffering after that, waiting for my health to change, but not actively making the changes necessary for my health to improve.

Looking back on it now, I am learning from my time spent in therapy, but it made little difference in my life at the time.

My true starting point in understanding how my emotions have contributed to my pain is this blog. Writing here has allowed me to explore and examine myself in ways I never would have otherwise. It has allowed me to acquire new tools and resources to actively apply to my intention of wellness.

What does that mean?

Well it means I am no longer sitting on my couch with a tub of mashed potatoes, convincing myself that my misery entitles me to eat it. And it means that I am no longer waiting for better health to find me, I am actively seeking it out. And it means I am no longer discouraged by the many set backs, because I understand it took years for this damage to occur in my body, and it will take years for me to correct everything, but each step I take towards healing tips the balance to the path of wellness and a better life.

For me, the tools and resources I have acquired to deal with emotional pain are writing, yoga, and meditation. The combination of the three have given me a greater awareness of the mind-body connection, which I believe is essential for healing our emotional pain.

Yoga and meditation teach you to connect with and examine your body, scanning for places of tension and pain. They teach you to acknowledge and breathe into those places, and not ignore what you are storing there. It has been an amazing process of self-discovery, and both practices often leave me more emotional but less painful.

Writing is where I come to process everything. This is where I put the piece together and try to make sense of them. Without this blog, I am certain I would still be waiting for my health to change.

So how can you take what I have learned and apply it to your own path to wellness?

First, you have to be ready to take your journey. You have to be ready to do the work and the research to find the best tools and resources for you. Then you have to understand that it is a journey of endurance and not be discouraged by the inevitable setbacks. You have to believe that you are worth the effort and that better health is possible.

If you are not there yet, like I wasn’t not that long ago, keep reading, keep researching, don’t give up. Never give up! Better health is possible. Once you believe it is, your journey will begin.

Each time at the start of a yoga practice, the instructor asks that we set an intention for that day; “What is it you would like to focus on today to get the most out of your time here?” I usually struggle to find my intention and get caught up in trying to find the right answer. I pressure myself into thinking there is a really cool and purposeful thing I should be focusing on, and if I don’t come up with it, I am missing out on some great ancient yoga secret.

Sometimes I try to set grandiose intentions – freedom from all pain, anxiety, and conflict in my life, from here until eternity. Sure, that can happen in an hour. Usually, I am still staring at the blank slate of my mind when the instructor has moved on, so I just skip setting my intention. But then I am left feeling like I missed out on an opportunity.

Today the opportunity came up again; “What is your intention?” And out of nowhere it came to me – Just let go. That was it. That simple. My intention was to let go. No more focusing on what I thought should be happening or what I might be missing out on, just be in the moment and experience it. And experience it I did. It was my best practice by far. My focus was completely on my body, the movement, and what I was experiencing. I found myself more stable and comfortable in poses that are normally problematic for me. My balance was greater. My range of motion was better. My focus was clearer. I found a wonderful balance between effort and ease. It really was a joyful practice.

At the end of each session we get into my favorite pose – savasana. That is the time where it all comes together for me. I can feel how my muscles have loosened and elongated. I can feel how the tension has left my neck and upper back. It is a time of complete joy and peace for me – my favorite part of every practice. Today I felt especially connected to everything; to the mat beneath me, to the music swirling through my body, to my breath as it expanded my abdomen and sustained me from the inside. If I didn’t discover that ancient yoga secret today, then there isn’t one.

And how simple really, I just let go and let myself be in the moment instead of in my head. Now really, isn’t this a concept we can apply to every aspect of our lives. How much less stressful would life be if we could learn to let go of what we believe is expected of us, and just be who we are in every given moment? I am probably the least flexible person in most of my yoga classes, but each stretch benefits me just as much as it does my 60 year-old neighbor who can reach her toes with ease. I need to remember that.

Today was a great experience of just letting go, but it took me many yoga practices to get there. It is something I am going to have to continue practicing too. Practice letting go. Practice being in the moment. Practice acceptance of where you are, and then you can work on reaching where you want to be. I want to touch my toes with ease one day, but it will never happen if I don’t practice.

Say the word “exercise” to a person with Fibromyalgia, and you will most likely get a negative response. Exercise is a harsh and ugly word. It has become synonymous with pain to most of us.

Rare is the Fibromyalgia patient who embraces exercise.

Not only does it elicit a pain response in most of us, but it also sends our defenses up. Too, too many times we have heard the unsolicited advice, “If you would only exercise you would feel much better.” We could all give examples of some of the insensitive and inaccurate things we have heard, that is not at question here, but what is under consideration is what truth is there in those comments?

It is hard to consider the validity to a comment that has raised our defenses and left us feeling misunderstood. But what if, regardless of how misinformed the comment and commenter, there is an underlying validity to it? Should we continue to be defensive and ignore what instinctively we already know? Who are we hurting if we do this? Not them, that is for sure.

Be Mindful

The fact is, not all exercise is good or even possible for most Fibromyalgia patients, but some form of mindful movement is essential if we ever want to improve our symptoms and our overall wellbeing. And yet it seems so counterintuitive: “It hurts to move, so you are telling me I need to move?” How does that make sense?

A lot of research has been done on this topic. Article after article has been written touting the benefits of exercise for Fibromyalgia. Here is a summary of the benefits of exercise for those with Fibromyalgia from WebMD:

helps restore the body’s neurochemical balance and triggers a positive emotional state

boosts levels of natural endorphins — pain-fighting molecules

triggers the release of epinephrine and norepinephrine, hormones that are known to boost alertness

burns calories and makes weight control easier

gives range-of-motion to painful muscles and joints

improves a person’s outlook on life

improves quality of sleep

improves one’s sense of well-being

increases aerobic capacity

increases cardiovascular health

increases energy

places the responsibility of healing in the hands of the patient

reduces anxiety levels and depression

relieves stress associated with a chronic disease

stimulates growth hormone secretion

stimulates the secretion of endorphins or “happy hormones”

strengthens bones

strengthens muscles

Would your life and your symptoms benefit with even one of the listed improvements? Then let’s step back from our conditioned response to exercise and think about how we can approach mindful movement with more positive results.

Be Gentle

This really is a matter of reconditioning our response to, and expectation of movement. Societies idea of exercising for health is to push through the pain; No Pain No Gain. Absurd really, and an approach that will guarantee failure for those of us living daily in pain. Take that approach and turn it inside out and then upside down. Gentle, mindful movement is the key to exercising with Fibromyalgia.

If you are familiar with my blog at all you know I am a huge proponent of yoga. Well I learned the hard way recently that I need to revise my ardor of yoga.

I Love Yoga, But Not All Yoga Loves Me

My first experience with yoga years ago was a No Pain No Gain experience. Even though I made an attempt to explain Fibromyalgia and my limitations to the instructor, she still pushed me way beyond my means. It was an awful experience and I was done with yoga. Fortunately, Fibromyalgia has taught me to consider and reconsider everything, because, when given the opportunity to practice yoga again, I did and had a completely different experience. It was one of the greatest epiphany moments I have had. Movement without pain. Hallelujah!

But then recently I had a setback to my love affair with yoga. For financial reasons I was no longer able to attend the gentle yoga classes that were having such a positive impact on my health and my symptoms. I was forced to look for alternatives; I tried YouTube videos with no success; found a few sources on Facebook that were okay, but not great; rented a few DVD’s, not even close. Then I resorted to buying a Yoga for Beginners DVD. I mistakenly interpreted “for beginners” as meaning “gentle.” Boy was I wrong. Massive failure and major flare-up.

But We Are Resilient – Remember

So I looked again specifically for “gentle” yoga, and I found a free class being offered at a local library. My love was back. I spent the next restorative hour in mindful movement so gentle I sometimes wonder if it is really benefitting me, but it is. The result was no flare, days of improved cognitive function, better sleep, and decreased pain – all from one class!

Not All Movement is Created Equal

So you tried yoga and it hurt and sent you into a flare and now you are done with exercising. Exercising is not for you. I could not possibly understand how severely exercise hurts you because if I did I would not be telling you to do it.

I understand all of the reasoning behind not exercising, because I used them all myself for many years. And if I had tried yoga again and it had been anything other than gentle and restorative, I would still be reasoning myself out of attempting any form of movement. It is understandable. We have become conditioned by our pain. But the really great thing is that we can also become reconditioned.

First you must trust that your muscles need movement. The longer they remain inactive, the more severely they will continue to hurt, the less energy you will have, and the harder it will be for them to support your frame. Your muscles want and need to move.

Next you have to find the appropriate movement for you. It may not be yoga. Maybe it is Tai Chi or Qigong. Maybe it is some form of water movement. Maybe it is a slow and gentle walk. Find what works best for you. Find what you love and what makes your body say Hallelujah.

Finally you need to accept that you will feel sore and there may be some discomfort, but you should not become discouraged by it. Consider how long you have been inactive. Honor you body and your limitations, but do not use them as the reason for not trying.

As with all things Fibromyalgia, there is no easy answer or quick fix, but if you intend to get better, then mindful movement is a necessary step towards wellness. Do not give up if your first attempt is a failure. Regroup and recommit yourself to mindful movement. When you find what works for you the rewards will be many, including an increased range of pain free movement. And as I like to say – be sure to take baby steps to avoid the making the painful leaps.

In support of National Invisible Chronic Illness Awareness Week

I am approaching the one year anniversary of my blog. I have grown a lot over the past 11 months. I have made many wonderful new contacts. I have learned to be more open and honest about my health – with myself, and with my family and friends. I understand more about the causes and contributing factors of Fibromyalgia. I could go on and on about my growth, but this post is not about me. This post is a celebration of you.

If you were to ask me the most important thing I am taking away from this past year, I would say YOU. From the members of my Meetup support group, to my blogging buddies, to my facebook friends and to my twitter team – everyday I am amazed by the quality people stricken with chronic illness – my chronic community.

You are not a passive bunch, you are passionate. Passionate to learn, and to share, and to heal. Passionate about your craft and your creativity. Passionate about your friends and family. Passionate about your causes and your concerns. And I want to honor your passion. Some of you may have read this list before, but I think it is worth sharing again. We can all use a reminder every once in a while about how valuable we are. And you are valuable – each and every one of you. Valuable, and so much more.

Who You Are

You are survivors.

You are scientists.

You are strong.

You are seekers.

You are smart.

You are sensitive.

You are stoic.

You are resilient.

You are resourceful.

You are artistic.

You are intuitive.

You are compassionate.

You are genuine.

You are proud.

You are beautiful.

You are passionate.

You are brave.

You are creative.

You are wise.

You are empaths.

You are private.

You are each different.

You are complicated.

You are connected.

You are givers.

You are a community.

You are family.

You are friends.

You love life and want to live it to the fullest.

You seek knowledge and understanding.

You appreciate empathy.

You have great senses of humor.

You have hope.

You are real.

You are much, much more than your illness.

Everyday you show me how valuable we all are. Everyday you impress me. Everyday you overwhelm me. And everyday you remind me that we are so much more than our illness. But just in case you do not always remember this yourself, look back over the list and take in all that you are. Pick out the ones that apply most to you, and really think about them. Focus on them for a few minutes. Say them over and over again in you mind. Be proud and say them out loud. Spend some time focusing on all that you are, not on all that you can no longer be. Your illness may be invisible, but you are not.