If there is one constant in life – it is change. And change is what the NFA is experiencing. The below President’s Message from Lynne Matallana goes into great detail as to what led up to the necessary changes, the current status, and future intentions for the NFA. I appreciate that they finally came forward with an explanation and wish them the best of luck in their time of transition.

Begin message from the NFA:

	Educating Encouraging Empowering

March 10, 2011
Dear NFA Friends and Supporters,

When the National Fibromyalgia Association (NFA) started 14 years ago, our purpose was to bring awareness and legitimacy to fibromyalgia (FM). Over the years, the needs of the community grew and so did our concern for people affected by FM and those in the medical and research communities dedicated to helping us. We wanted to share with the media what it was like to live with FM so that others would become concerned and could help us to make sure things were moving forward so that people with FM would have better support, more effective treatments and a better quality of life. The ultimate goal has been and continues to be that through research and education we would learn the cause and how to treat, prevent and/or cure it.

The organization was started and grew out of my attic into a full scale international nonprofit organization which achieved great recognition and credibility with patients, the medical community and government agencies. Over the years the needs of this large population of people which we represented continued to grow. We found ourselves in a position where we couldn’t say NO to anyone who proposed new programs addressing the needs of this community because we understood the many obstacles and unmet needs that faced people with FM every day. We wanted to help ensure that everyone with FM obtained a better quality of life and receive the medical care they deserved.

At the end of 2007 no one anticipated the looming national economic downturn. The NFA like all other nonprofit and for profit organizations was not prepared for our country’s financial crisis, reduced foundation funding, or the impact of new restrictions and tighter transparency regulations put on companies that helped to financially support our organization. Our funding was cut by 50% to 80% and our annual $2 million budget diminished by 60% in a matter of months. There were those in the FM community who were in a position to help us, and we greatly appreciated their donations and contributions. However, because so many in the FM community are struggling and not able to make donations there was no way to make up the difference. Then, in September 2010 right at the height of the NFA financial crisis, I was in a terrible accident that resulted in a major surgery, which required four months of bed rest followed by nine to twelve months of rigorous and painful physical therapy. Even today I continue to struggle to regain my health.

This set of circumstances forced the NFA, like many other companies and particularly nonprofit organizations, to undergo a period of transition and reorganization, including staff layoffs and cut backs on major programs and services. Like many other nonprofit organizations that were adapting to our country’s economic environment, the NFA also adapted and made changes necessary to continue to fulfill the key elements of our mission by focusing on retaining the programs which would help the largest number of the FM community members. In doing so some of the personalized and individual help we had been able to provide people in the past had to be cut back or eliminated. Unfortunately, this might have made it appear that we were not concentrating on and responding to the specific and individual needs of people with FM.

Over the past seven months we have realized that you have many questions and concerns about the NFA. Had it been our choice, we would have shared this information with you, the FM community. However, we were bound by legal constrictions and agreements of confidentiality to wait until we had developed a plan that would satisfy many of our financial problems. Foremost, we felt that it was important for us to make sure that people with FM would have the NFA and other organizations available to continue to serve the community. In order to make sure that would happen, we had to stay within the bounds of these legal constraints. We can assure you that no matter how bleak the situation our dedication to continue the work that we started so many years ago never wavered, and we have had to make some of the most difficult decisions we have ever had to make in order to assure our survival.

We are now pleased to share with you that we have reorganized and developed a new plan that allows us a platform upon which we can move forward. We are very excited that we have been able to accomplish this reorganization in such a short period of time. We believe our work will continue to benefit people with FM and allow the NFA to serve the FM community in a restructured format. In order to meet the needs of FM patients, the NFA has shared their programs and assets with other nonprofit organizations that are committed to implement some of the programs that the NFA previously developed and implemented.

Fortunately, even before we experienced the impact of these changes, the NFA had planned to subdivide and receive help implementing certain programs through its Leaders Against Pain (LAP) program. The participants of the LAP training and the members of the Leaders Coalition were going to help administer local advocacy, patient information, FM awareness and media outreach programs. The economic crisis forced us to enact this plan of action ahead of schedule and identify key leaders to help us in this endeavor. Jan Chambers, a LAP graduate and the Director of the NFA Coalition is also the founder and President of a Utah 501 c 3 nonprofit organization, the Center for Understanding, Education, and Research of Fibromyalgia (CURE FM). She was a prime candidate and a passionate supporter of the FM community who came to us volunteering her time and expertise. Recently her group was renamed the National Fibromyalgia and Chronic Pain Association (NFMCPA), which has the capacity to represent the fibromyalgia community through high profile and public-awareness events, as well as to further become involved in research opportunities.

The NFMCPA will also work to ensure that an interest will remain in continuing to investigate FM’s relationship to overlapping conditions, such as irritable bowel syndrome (IBS), migraine headaches, interstitial cystitis (IC), restless legs syndrome (RLS), reflex sympathetic dystrophy syndrome (RSD), chronic pelvic pain, and other comorbid chronic pain disorders. Jan and her organization understand the importance of recognizing the connection of all of these disorders in assuring the best possible treatment outcomes for people with fibromyalgia. She is committed to educating the medical community and the patient community about the importance of recognizing and addressing each of these disorders in treatment regimens. Jan has already jumped into the FM advocacy arena by becoming involved in the national Pain Care Forum Training and Education Subcommittee, and she plans to use her knowledge to continue the development of the NFA Leaders Coalition.

The NFA and FMCPA will also collaborate with the American Pain Foundation, the American Academy of Pain Management, PAINWeek, Allsup and other organizations focused on fibromyalgia and chronic pain. We believe strongly during these difficult financial times that organizations must work in collaboration to meet the needs of our respective communities.

We encourage you to join us in supporting Jan and her team as they continue to grow the NFMCPA and its programs. You can visit www.fmcpaware.org for information on this year’s Awareness Day events and advocacy updates. On this site you will also find a fibro-friendly doctors list, support group information and other resources, including disability news, research highlights and advocacy updates. We look forward to working with the NFMCPA, and sharing our years of experience and network of supporters.

The NFA will be available to support the FM Community and will continue to help improve the quality of life of people with FM. We are currently involved in several important media campaigns, implementing many continuing medical education programs, assisting and encouraging FM scientific research and providing information and educational materials for both the patient and medical communities. We are also dedicated to providing new opportunities for people with FM to participate in surveys and registries that will make an impact on the future direction of research and treatment development.

Even through these difficult times, we continue to provide services to help hundreds of thousands of NFA constituents. Although our normal communication channels were restricted during the past couple of months, we continue to bring our supporters information about our programs through our website, monthly newsletters, e-alerts, patient seminars, continuing medical education curriculums ,Webinars, radio blogs, Facebook and other social media outlets.

We ask for your continued patience and support as we move forward. The NFA, as always, is committed to working on behalf of all of those affected by fibromyalgia and to helping improve their quality of life.

Sincerely,
Lynne Matallana
Founder and President

The Benefits:

Yoga heals. A recent study on yoga for fibromyalgia conducted at Oregon Health & Science University confirms what I have been experiencing since beginning my yoga practice 18 months ago – “yoga appears to assist in combating a number of serious fibromyalgia symptoms, including pain, fatigue, stiffness, poor sleep, depression, poor memory, anxiety and poor balance. All of these improvements were shown to be not only statistically but also clinically significant, meaning the changes were large enough to have a practical impact on daily functioning. For example, pain was reduced in the yoga group by an average of 24 percent, fatigue by 30 percent and depression by 42 percent.”

Yoga is a joyful practice, and the results are undeniable as is clearly demonstrated in my own personal experience and the above referenced study. I cannot say it enough. Yoga heals!

I can, and am getting better! I am not only feeling physically stronger, I am also feeling mentally and spiritually stronger. I have hope. I have joy. I have peace. I have a new love and enthusiasm for life that I have not experienced in many years.

We are not alone in our suffering. One of the unexpected benefits of the teacher training program is the camaraderie I have found with the other students. Suffering is not unique to fibromyalgia, and the program has reminded me of this. Each of the students was drawn to yoga from a different need, and listening to the stories of others has helped me understand how universal suffering is, which has allowed me to let go of the limiting belief that anything I am experiencing is unique or unusual.

I do not have to accept the level of suffering I have been living with for 14 years. Suffering is found in more than just the physical manifestation of FM. It can also appear as self-judgement and criticism, guilt and regret, isolation and silence. These are all conditions we create in response to our illness, but they are also conditions we can change. As we being to improve our mental and emotional suffering, our physical suffering improves naturally – and vice versa.  Love yourself. Be kind and gentle to yourself. Embrace your body’s natural ability to renew and restore. It can and it will if you nurture it properly. You are worth the effort!

The Challenges:

I still have symptoms and must remember to continue to listen to my body and honor what I am feeling. I experience so much joy in movement, but given the neurological nature of FM, it is possible and even likely to over do it and trigger a flare. It is not in the practice of yoga that I find myself overdoing it, but in the routine of my daily life. Because I have so much more energy and much less pain, it is easy to get carried away and take on too much. I do not want to slip back into the unhealthy patterns that lead up to and contributed to the severity of my FM – always on the go, saying yes to everything and everyone, never slowing down to enjoy the moment and breathe! But the good news is that when I do experience the symptoms of a flare, they are shorter and less intense. I recover more quickly. I am hopeful that the 2 week and 2 month flares are behind me!

Taken in Sedona AZ after a 3 hour hike - something I could not have done just one year ago.

If I had to nail down the one thing that has benefited me the most, it would be the understanding that I can and do control my health. Fibromyalgia is a very real condition, but that does not mean it is a permanent condition. We have options, and there are things we can do and lifestyle changes we can make that will diminish the symptoms we experience. I have no idea if I will ever completely eliminate the symptoms I experience, but I am continuing to improve and better my quality of life. If I only improve to the percentages stated in the study above, that is enough improvement for me. But I believe I will improve much more!

As much as I want each one of you to experience the same improvements I am, I understand that we all must take our own journeys. Yoga may not be your exercise of choice, and that is okay, as long as you choose something that improves your health and slowly betters your quality of life. Did I mention it has taken me 18 months to get to where I am? It does not happen overnight, and it certainly has not been a straight line from my first yoga class to the teacher training program I am in today. If I had to map it out it would make us all dizzy! But there has been a lot of joy in the journey so far, and I have a lot of motivation to continue on, regardless of the obstacles and dangerous turns ahead.

Make the choice – choose to improve, choose an exercise you love, choose to feed your body the foods that nourish and heal, choose to love and forgive yourself, choose to love and forgive others, choose health. It is possible. The choice is yours!

Researchers used functional magnetic resonance imaging (fMRI) on 36 female subjects – 18 fibromyalgia patients and 18 healthy subjects – to obtain their newly published results:

Our results clearly show that individuals with FM have greater connectivity between multiple brain networks and the insular cortex, which is a brain region previously linked with evoked pain processing and hyperexcitability in FM,” said Dr. Napadow. The research team found that patients with FM had greater intrinsic connectivity within the right EAN, and between the DMN and the insular cortex — a brain region linked to evoked pain processing. “In patients with FM, our findings strongly implicate the insular cortex as being a key node in the elevated intrinsic connectivity,” added Dr. Napadow. “Patients demonstrated greater DMN connectivity to the left anterior, middle, and posterior insula.” In the right EAN, FM patients demonstrated greater intra-network connectivity within the right intraparietal sulcus (iPS). Researchers found no differences between the FM and healthy control groups for the left EAN or the MVN.

Essentially what that means to us is that there is a new study demonstrating a diagnostic difference in the brains of people with fibromyalgia and how we process pain.

This study will need to be duplicated and reduplicated before we see any big changes in the diagnosis and treatment of fibromyalgia, but it is good progress. Not only does it add validity to fibromyalgia, but it could lead to a decisive diagnostic test for the diagnosis of fibromyalgia. This has been one of the greatest barriers we have faced in the acceptance and treatment of fibromyalgia.

Story Source:

Wiley-Blackwell. “Resting Brain Activity Associated With Spontaneous Fibromyalgia Pain.” ScienceDaily 30 July 2010. 1 August 2010

Last May I challenged myself to a 30 day writing project. My thought being, it takes roughly 30 days to develop a habit, so for each day in May I wrote a blog post. It was a success on some levels, but I failed at making writing a daily habit.

Writing is a form of meditation for me. I write more than what you see here on my blog. I do not always enjoy the process of writing, but I enjoy it most when I am singularly focused on it and my only purpose is on finishing my current sentence and thought. I love those moments when I am completely absorbed in the act of writing.

“Learning to be mindful and present, clear and attentive is the doorway to a life of depth and joy.”

Mindfulness is something I seek to achieve in all aspects of my life – writing, relationships, work, eating, exercise. I want to be happy and present in what I am doing in the moment, not regretful of my past, or anxious of my future. I want to learn to be present in the now, and find a greater joy in the present. I believe meditation is a path to the joy I seek.

I have dabbled with meditation – taking a group class here, listening to a guiding voice there. Each experience with meditation has been restorative and encouraging, but my knowledge and understanding of it is relatively minimal. So this May I am challenging myself to another 30 day project.

For the next 30 days I am going to explore different types of meditation, and practice meditating for at least 20 minutes each day. My goal over the next 30 days is to learn more about the many styles of meditation, and to find the one (0r ones) most compatible with my needs. I also hope in the process to establish a habit, and continue beyond May to dedicate the time each day to meditate.

“There is no end to the meditative process: it is a lifelong practice that can be undertaken by anyone, regardless of age and spiritual beliefs, and there is no right or wrong time to start on your meditative path.”

I am beginning my meditation journey with a book that is intended to help readers begin a meditative path, Beginner’s Guide to Buddhist Meditation,  by Christina Feldman.

Beginner’s Guide to Buddhist Meditation is a beautiful book, filled with soothing images and helpful charts. Organized in a way to guide the beginner from the basics – how to meditate, when to meditate, where to meditate – through the styles and obstacles of meditation, Feldman’s book opens a simple and straightforward door to meditation. There are no rights and wrongs in Feldman’s meditation teaching, only loving kindness and heartfelt communication.

“Meditative teaching is not an exhortation or demand but an invitation to explore the ways of walking new paths of mindfulness and wakefulness. It is an invitation to discover a deeper well-being and inner richness that can transform every aspect of our lives.”

One of my goals for my journey into meditation is, according to Feldman, one of the central teachings of meditation: to be at ease with the events of my mind and body.

We all know that even in the mildest flare, we can become consumed and overwhelmed by the pain we are experiencing – and even by the pain we are not currently experiencing, but are remembering and anticipating. Pain is a powerful motivator for fear and anxiety. I believe it is possible to overcome fear and anxiety, and I believe meditation can help by teaching me compassion, peace, and understanding.

“Understanding: Central to the Buddhist path is the understanding that we cannot avoid aging, sickness, or death. We cannot avoid all loss, sorrow, and heartache, and the endeavor to do so only magnifies pain. We do begin to see that confusion, agitation, fear, and stress may become optional in our lives.”

Fear and stress are an option? If this is so, I doubt we can just accept that it is. At least for me I know it will take practice to learn to let go of my ingrained responses and accept joy. I want to learn to find the joy that exists with the pain. I believe it is there. I just need to learn how to find it.

“Meditation is not about avoiding or softening the blow of moments of conflict and difficulty that we are bound to encounter during our lives. Rather it is a means to approach these moments with clarity, understanding, and calm.”

Beginner’s Guide to Buddhist Meditation is so rich in thought, context, and instruction, I am certain it will serve my desire to develop a regular meditation practice to reread it several times. It is simple and approachable, but Christina Feldman has packed so much guidance and wisdom into its short 96 pages, each time I open it a new passage jumps out at me. Just look back over all of the above quotes and you can see the richness of concepts and wisdom Feldman shares. It is a great tool to begin my journey into meditation.

Are you interested in learning how to meditate, or in deepening your current meditation practice? Then let me recommend Beginner’s Guide to Buddhist Meditation to you. And fortunately I can do more than recommend it. Feldman’s publisher Rodmell Press has again generously donated a book to give away to one commenter. Just leave a comment, and on May 14 I will randomly select a winner to receive this beautiful introduction to meditation.

Join me on my quest for more mindful living. Through meditation we can learn to find acceptance of our illness and joy in the meaningful act of living.

“In your meditation, as in your life, you will have to choose over and over whether to follow the paths of impatience, judgment, frustration, and complexity, or the pathways of patience, acceptance, balance, and simplicity. Increasingly, you will come to understand that the choice lies in your own heart.”

How do you filter all this information?

Who do you believe?

Where do you go for your expert advice?

Fibromyalgia has slowly become current. And by that I mean with FDA approval of drugs to treat FM, and with the marketing that comes along with it – to us via media, and to health practitioners via free samples and kick backs – Fibromyalgia is visible. So of course every health expert and health blog must have something to say on it or they are not being current. This benefits us in a lot of ways, but it also creates a problem of authority.

Who do you trust?

Who do you believe?

I recently received an email asking me about a current book on Fibromyalgia. Is it authentic? Is it worth the read? Is the author simply looking to cash in on the newest hot topic?

Having not read the book myself I could easily have said “sorry I have not read it” and moved on, but by creating this blog I have positioned myself as a type of authority on Fibromyalgia (and I believe patient experts are the best experts), so I shared with her my general opinion on all Fibromyalgia related information out there:

Knowledge is power. If you are interested enough from researching the book, I say get it and read it. It may turn out that you disagree with the authors findings/opinions on FM, but it can often be just as helpful to read literature we disagree with, as it is to read a tried and true information source.

But be a savvy reader. Blind faith, blind trust in “authority” is just scary. Especially in this age of the web when anyone can write and publish an article, and call themselves an expert. A healthy amount of skepticism is good. Trust yourself first, and then take away from your research the things that serve you best. I have had several people tell me that yoga sucks! I disagree, but I leave it at that. It is not up to me to convince them otherwise. Because truly, the only thing I am an authority on is my daily battle with Fibromyalgia. Keep this in mind when reading all the “expert” advice out there; you are your own best authority.

And the sign said everybody welcome, come in, kneel down and pray
But when they passed around the plate at the end of it all,
I didn’t have a penny to pay, so I got me a pen and a paper and I made up my own little sign
I said thank you Lord for thinking about me, I’m alive and doing fine ~ Five Man Electrical Band

Following up on the Progressive Relaxation guided technique of week one, in week two we learned a simple and useful technique called Mini-Practices.

Mini-Practices

For relaxation to benefit you the most, you need to learn how to relax and calm yourself upon your command. This skill can be very helpful when you are feeling increased tension or pain, but are unable to go to a secluded area to do progressive relaxation.

To Do a Mini-Practice:

1. Stop yourself in whatever you are doing
2. Take a deep breath
3. Say the word “relax” to yourself
4. Slowly exhale
5. As you exhale  focus on the sensations of relaxation
6. Allow your jaws to relax, allow sensations of heaviness to flow downward from your shoulders throughout your body
7. After 30 seconds go back to what you were doing – regardless of how well you have succeeded in relaxing

Reminders to do Mini-Practices

Your goal is to do about 5 mini-practices the first day and then gradually build up to about 20 mini-practices a day over the next few weeks. You can remind yourself to do a mini-practice in many different ways. Some people do a mini-practice every time they feel annoyed or tense. Other people do one every time they stop at a stop light or pick up the telephone. You can remind yourself to do a mini-practice by placing adhesive “dots” around the house (by the door, near your mirror) or on personal belongings (such as a watch, or pocketbook). Every time you see a “dot” you will be reminded to do a mini-practice.

It doesn’t matter how you choose to remind yourself to relax, what is important is that you practice frequently. Little by little you can develop a habit of keeping yourself relaxed throughout the day.

Learning to relax really is a skill. We live in a constant state of flight or fight. Learning to shut that down, even if it is only for 30 second increments is a powerful tool.

After practicing this technique for a week I can say it is something we should all learn and add to our coping skills toolbox. I have not counted to confirm that I am up to 20 mini-practices a day, but the cumulative affect of the number I am doing is very positive. I have a greater feeling of control over my emotions and enjoy the short sensations of relaxation. They are kind of addicting! I find myself doing one each time I wash my hands – and I am compulsive hand washer.

Try it for yourself. It is such a simple and useful technique there really is no reason not to try it. The researcher did mention that some people have an aversion to the word “relax” (feels too harsh), and if this is the case with you, it is perfectly acceptable to find your own word – chill, easy, breath, etc.

Be sure to get yourself a pack of the adhesive dots. They are a fun and useful way to remind yourself to relax.

This time of transition in my life has been trying to say the least. An emotional roller coaster would be a better way to describe it. One second I am excited by possibilities and the next second I am crushed with defeat. Sounds a lot like life doesn’t it?

It just so happens that a research study I was slated to participate in months ago started up last week. It is a local study on yoga and cognitive coping skills for the treatment of Fibromyalgia. I was hoping to end up in the cognitive group since I already have a good handle on the yoga, and  since the trials of this past month have left me in serious need of some coping skills. Fortunately that is exactly where I ended up.

Last week was our first session and we spent most of the two hours getting to know everyone in the group. Then we proceeded on to the first of the eight Pain Coping Skills we will be learning over the course of the study. Progressive Relaxation is a guided technique. While laying or seated in a comfortable position, we followed the directive of the study leader and proceeded with a focused tightening and relaxing of targeted muscles.

Starting from our heads and working our way down, we slowly and purposefully tightened and relaxed major muscle groups. It was a controlled and relaxing exercise. Before we began we rated several of our symptoms on a sliding scale – pain, fatigue, brain fog. At the end of the exercise we were asked to rate our symptoms again.

I think everyone agreed it was  relaxing and we all felt somewhat restored. But for me it did not elevate my pain. Some of my muscles that had been burning – like my upper back between my shoulder blades – did experience relief, but then other muscles where my pain was more sharp and focused seemed more painful after. It is hard to tell whether the pain actually increased from the movements or if I simply became more aware of it when the overriding burning pain subsided.

Our homework was to repeat the exercise twice a day listening to a DVD recorded by the lead researcher. My homework left me with the same experience. So I suppose I would say for me it is a good technique for burning pain, but not so good for sharp, stabbing pain.

This week we are learning a new technique, and so on throughout the eight weeks of the study. Their hope is that one, two or maybe even all eight of the skills they teach us will help us and be implemented into our daily routines. That is my hope too!

My second hope is that I will be able to continue on with the study after I have started working again. It is a possibility that it will conflict and I won’t be able to complete the eight weeks. That would be a disappointment, but I will worry about it when the time comes.

For now, I will continue on and report here what we are doing and whether or not it is helping me.

Do you have any experience with Cognitive Coping Skills/Behaviors? I would love for you to share your experience with it. Was it helpful to you? Do you continue to practice the skills you learned? Do you practice daily or do you target your practice depending on your symptoms?

One year ago today I sat down at FibroHaven for the first time and wrote this – Welcome!

In my very first post I shared what I hoped and intended to accomplish with my blog:

I have found the blogs I like best are the ones whose authors are aware they have an audience, yet they speak with a realness and simplicity.  They are authentic.  I image if I met the author they would be exactly as they sound on their blog.

That is the approach I hope to take in my writing.  I want to be real.

One year later I think my blog is exactly as real as I was hoping it would be and so much more.

I had no understanding at the time of the relationships I would form and the people who would reach out to me because something I wrote made an impact on them. I knew there was a need for a positive voice in the Fibromyalgia community, but I had no idea how much it would come to mean to me to be that voice.

My heart, soul, love, hope, spirit, and joy are in this blog. I doubt that I have ever been more proud of a personal accomplishment. Maybe that game winning home run I hit as the only girl on my little league baseball team. That was pretty cool! But seriously, FibroHaven is my baby.

Every time I read a comment like this from a recent post, I know I am doing what I am meant to do:

Thank you so much for sharing! I have only recently realized how important it is to reach out to those around me instead of hiding. I’m not weaker as a result of my illness. It is people like you that have helped me realize this. -Terri Simmons

Heart warming!

I have changed so much over this past year, and I doubt any of it would have occurred without this blog.

• I am more accepting of my illness
• I understand that I need to be my own best health advocate
• I understand the value and importance of researching every possiblity
• I recognize that there is no quick fix, no magic bullet
• I do not blame anyone or anything for my current state of health
• I have become more mindful of how my lifestyle choices contribute to my wellbeing
• I have a new spiritual awareness through yoga and meditation
• I am more in tuned to my body and my environment
• I am hopeful
• I feel loved
• I believe with all my heart that I will continue on this path to wellness and one day be symptom free
• I accept that there will be setbacks and obstacles, but that progress is still being made

If I had to give a number to my symptomatic improvement over this past year, it would be about 15%. Fifteen percent better than I was one year ago today. Wouldn’t you take that? Using the most basic of math, and not taking any variables into account, if I continue at a “15% a year” rate of improvement, I will be symptom free in just under seven years. After 13 years of living with a range of Fibromyalgia symptoms, seven years is acceptable to me.

But I don’t believe it will take seven years, simply because I cannot ignore the variables. If I had to give a number to my emotional and spiritual improvement (the variables) over this past year, it would be 60%. I am happier and more hopeful than I have ever been. I am at peace with who I am, and excited about who I am becoming. And I contribute the work I have put into FibroHaven for guiding me into who I am becoming.

I have put the work in, and I will continue to do so. I will continue to share and relate my experiences here. Some you will relate to, some you will not. But by taking the time to research and read, you are becoming your own best health advocate. Knowledge is power.

Thank you all for reading and commenting here. You are a big part of the reason I am feeling so loved and hopeful.

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 was thrilled to get the opportunity to meet Lynne Matallana, founder of the NFA. We share a passion to support, educate, and raise Fibromyalgia awareness. I have looked to her example many times over the course of the last several months since beginning my blog and support group. Meeting her in person did not disappoint, and only fueled my desire to make a difference in our community as she has.

Dr. Andrew Blumenfeld of The Neurology Center was the featured speaker. He focused on Fibromyalgia as a disease of the central nervous system and gave an exceptional presentation. He faced a hungry audience with the grace of a man confident in his understanding of our complicated disease – and he does classify Fibromyalgia as a disease – not a syndrome, disorder, condition,.etc. In his estimation, a medical condition that produces disability is a disease. Then Fibromyalgia most certainly is a disease.

I have long been convinced that Fibromyalgia is a neurological disorder, and the newest research supports that it is. I asked Dr. Blumenfeld if there would eventually be some form of brain imaging test for a definitive diagnosis of Fibromyalgia, and he believes there will be. In fact the main reason he gave for there not being one currently is the cost involved. It is encouraging to know that one day – maybe soon – there will be a direct route to a diagnosis, not the “process of elimination” route we all had to take to get our diagnosis.

The evening was a great success. I received so many comments of appreciation from the audience. It reinforced my belief that we do not take our diagnosis in stride; that we are all looking for answers; that we want to feel supported and understood; and that we want to be well. I appreciate the NFA asking me to take part in their Fibro Focus series and am very excited to be able to share with you the information on the next six Fibro Focus events scheduled around the country.

Fibro Focus Colorado

Date: September 19, 2009, 5:00PM.

Contact: Lannette Johnson, lannette@colofibro.org, 303.847.3421

Location: Pinaacle Events Center, 1001 W 84th Ave, Federal Heights, CO

Fibro Focus Illinois

Date: September 22, 2009, 7:00PM

Contact: Diane, dabulls@gmail.com, 847.895.9596

Location: Schaumburg Township Building, 1 Illinois Blvd., Hoffman Estates (Chicago), IL

Fibro Focus New York

Date: October, 1 2009, 6:30PM

Contact: Kathy Zabliski, kzabliski@verizon.net, 315.946.4498

Location: Thompson Hospital Simulator Room, 350 Parrish St., Canadaigua, NY

Fibro Focus Pennsylvania

Date: October 6, 2009, 7:00PM

Contact: Tennille Morrow, paws_rule@comcast.net

Location: Lancaster General Health Campus, 3rd Floor Conference Room, 2100 Harrisburg Pike, Lancaster, PA

Fibro Focus North Carolina

Date: October 19, 2009 – time TBD

Contact: Cathy McCarthy, Triangle Positive Energy Fibromyalgia Group, csuspect@mindspring.com, 919.489.5316

Location: Triangle Region, North Carolina

Fibro Focus Michigan

Date: November 12, 2009, 1:00PM

Contact: Ruthann Bruce, arubobb@wideopenwest.com, 734.981.2519

Location: Merriman Rd Baptist Church, 2055 Merriman Rd., Garden City, MI

Are any of these events near you? I hope so. It will be well worth the investment of your time to attend. You will be amongst friends, find people who understand, and learn from a Fibromyalgia literate doctor from your community.

I would like to give special thanks to Megan at the NFA for all her behind the scene organizing of the event, and for the photos you see above. And also to Pfizer’s marketing team, Liz and Katie from Weiss Comm, for all the hard work they did. It was a joy working with all of you. Best of luck on your future Fibro Focus events.