You know how it is in those moments when you get completely inspired – everything is brighter in that instant and you know your life is forever going to be changed for the good. Then you get home, and you set the books down. Life picks up exactly where it left off and you forget. You forget how inspired you were. You forget how to change, how to be better. Heck – you even forget to read the books. Yep, that is exactly what happened.

So I haven’t read his books yet, but I do get his monthly newsletter, and the title of this month’s article really spoke to me: Vulnerable Leadership.

That is exactly how I am feeling these days as the founder and leader of FibroHaven – vulnerable.

You see, my purpose is to share and encourage. I want to be a positive voice and a leader in living well with Fibromyalgia. But how can I do that when I have been feeling miserable since May? Since 1996 really! It is something I struggle with everyday. And it is the reason I am feeling vulnerable today.

I choose not to share the miserable stuff here. You know all too well about it. I would not be explaining or describing something you have not experienced many times yourself. But how do I balance the vulnerable me – the me that lives daily with the ever present and fluctuating symptoms of fibromyalgia – with the hopeful me – the one who embraces life as much as possible despite my constant fibromyalgia companion.

I don’t know. I do not have the answer. But in his article, Mike shared five key principles of vulnerable leadership, and that is where I am going to start.

1) Admit and own your mistakes

My mistakes are many! Daily even. Do you know I have been planning a relaunch of FibroHaven for months? It is still going to happen, and it is going to be really exciting when it does (great new features I know you are going to love), but as the creator, leader, and main cog of FibroHaven, I have dropped many balls.

Sure my health is partially to blame, but so is my procrastination, and my lack of follow through, and my frustrating tendency to sit back sometimes and let life come to me. It doesn’t, and it won’t. It is on me to make this happen. I chose FibroHaven. Nobody asked me to do this, but now that there is this wonderful community connected because of it, I need to follow through better – and I will.

2) Share your fear and insecurity

My fears are many too. Putting myself in the position to be a voice of positivity and change, I fear letting you all down by not changing quickly enough myself. I believe in a holistic approach to wellness, and I have been perusing that approach for a better part of a year, but I am nowhere near well. I fear this makes me a hypocrite and a fraud.

The thing that brings me back to share my philosophy is that I believe in my heart that I will get better. I will improve. I am on a wellness journey, not a crash course. And my hope is that by sharing it here with all of you, something I say may trigger a change in you. Something I experience may inspire you.

I have two purposes on this journey – get well, and encourage you to take your own wellness journey. But there are moments when I feel like “Who the hell am I to encourage someone else when I have so little to offer myself today.” I like it when those moments pass. And fortunately they always do.

3) Don’t take yourself too seriously

This one is pretty easy for me. My sense of humor is my lifeline, my core, my compass. Laughter really is the best medicine, and I am usually the first to laugh at myself. I can share funny and embarrassing things about myself here (and I have) because it is real, and that is life.

Remind me to tell you about the day I ended up ankle deep in wet cement because I thought the construction guys were coming on to me – not yelling to warn me about the wet sidewalk they had just laid. That ended well.

4) Share your own process, journey, and challenges

That is exactly what this blog is – my shared journey. Good to know I am doing this right!

5) Ask for and receive help from others

Oh this is a tough one for me. Now I will be the first to advise you to do this for yourself, but to put it in practice in my own life – that is so hard for me. Again, refer back to my often feeling like a hypocrite. It is for reasons like this.

Do as I say not as I do, right? Wrong! I really need to work on this for myself. There are so many areas where I could use help just with FibroHaven. Who knows, maybe if I were not so stubborn and short-sighted I could have launched the new site by now. I don’t know. All I know for sure is that I am flawed. I have a lot of work to do on myself. And sometimes this makes me reluctant to get on here and advise and encourage you.

But please know this, that everything I share on here, I share because I care. I know how dark this chronically ill life can seem at times. I know how isolating it can be. My hope is to shine a tiny little light, and maybe start a conversation or two.

One of my greatest moments came the other day when two people I met through FibroHaven became friends because of FibroHaven. One lives in California, the other in Virginia. Their paths may have never crossed were it not for FibroHaven. That is it. That is what it is all about for me. And that is what keeps me going on the days when I feel like no one should look to me for advice and support.

There is a reason for all of this. Maybe I am meant to fail and flounder. Maybe that makes me more real. I don’t know. But I do know that I love this community. It gives me courage and reinforces my hope.

And there it is. My vulnerable side…

I was surfing around through my old posts, looking for an appropriate one to share, and I came across this post I originally published October 13, 2008, the same month I began my blog.

Selflessly Selfish

I struggle every day with who I am. I am different because of the Fibromyalgia. I am not the independent, fiercely productive person I once was.

Every morning I envy (but am grateful for) my husband and his ability to jump out of bed, hop into the shower, and rush out the door on his way to a destination where he knows his purpose and is able to perform at a high level. I lie in bed with muscle soreness, a dizzy head and complete exhaustion and wonder, “how am I going to contribute today?”

And it is not simply how am I going to contribute to my house and my husband, but how am I going to contribute to my physical and emotional wellbeing, and how am I going to contribute to the world around me.

Sometimes it is the smallest things I do that contribute the most and make me feel the best. I dry my hands on a dishtowel rather than a paper towel. Yippee! I just saved a tree. I pick up the wrapper from a straw that a fellow patron at the coffee shop has let the wind take away. She doesn’t know it, but I do and it makes me feel good.

There are days when I let the wrapper blow away. Days when I tell myself I am in too much pain to bother, but I never feel good about those moments. I always feel that I have given up or given in to the Fibromyalgia. If too many of those moments build up I get depressed, and then it becomes even harder to live productively with FM.

That is the point I am trying to make. I struggle to be a better person for myself. To be someone that, in spite of all that is different in my life, I still feel useful and productive, and that in very small ways I am contributing to my world. By trying to be conscientious and selfless I am being selfish, because I am the one who benefits the most.  And the small things add up.  They really do make a difference.

So what did I do that was so great today? Nothing so far, but the day is not over. I still have time.

Wow! Rereading this post really took me back. It really made me take a moment and reflect on how much has changed in the 18 months since I began this blog.

And that is what I want you to know about me: I have changed. I am different. I am improved.

I am no longer at the mercy of Fibromyalgia. I am a participant in my health, not an onlooker. And I got here by making many small changes:

I created a community, starting with this blog, which brought people like Kathy into my life. I began sharing more and worring less because I have a greater support foundation to rely on.

I began doing research and filtering the abundance of information on Fibromyalgia to determine what fit best for me. I determined a holistic approach was more appropriate for me than the pharmaceutical approach taken by most doctors.

I added supplements to my daily care.

I began practicing yoga and cut gluten out of my diet. Through research, trial, and error (and believe me there were years of error) I found what works for me and my health.

I slowed down…… and took many baby steps to avoid making those painful leaps.

This has been a true journey, and I am so grateful for how far I have come. It was not without work, setbacks, and a lot of effort. But the foundation for my change came from the belief that I could improve, and that it was up to me to figure out how.

I am still frequently tired and dizzy in the mornings. I still have daily symptoms. I am not always able to contribute. But my progress is discernible.

I hope this encourages you. I hope you are able to look closely at your daily habits and routines, and distinguish what nourishes you from what holds you back. There are many components to Fibromyalgia we cannot control. Take a look at what you can, and honor yourself by making the best choices for your particular situation. You can change. You can improve. Believe it!

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.

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.

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.

I have been feeling pretty awful lately. I can always count on the heat of summer to bring on several really bad flares, or just one continuous knock-me-on-my-butt-and-suck-my-joy-of-life kind of flare. This summer had been kind, mild even. And then last week happened. Wouldn’t you know, it picked my birthday week to turn miserably hot. Blech!

Perspective: Regardless of my enthusiasm for turning 40 and the promise of a brighter future, I still have a lot of work to do. I still have an active and severe case of Fibromyalgia. I am still learning to manage my symptoms. I am not in control – yet.

When flares happen they also force me to prioritize. How important is it really if I am not caught up on the laundry? As long as there is something clean to wear, not very. Will my friend still love me if I cancel lunch on her AGAIN? If she is really my friend, then yes.

The biggest thing I have battled with during this flare is my commitments. I had a very big and important local support group meeting to coordinate when this flare was just beginning. I felt out of focus and disconnected through the entire event, but with help, I made it happen. It was a great evening attending by members of FibroHaven and also people in our community looking to understand and learn more about Fibromyalgia. I have the NFA to thank for the event, and plan to do just that in my next post. On my list of FibroHaven related priorities, this event was at the top.

My blog would be next on that list. Notice the lack of posts from the last few weeks? It is usually the case that I write less during a flare, but in this instance there is another reason I have not been posting – guilt.

Several months ago I made the commitment to write a post a week for Everyday Health.com. I felt it would be a great way to help raise awareness for Fibromyalgia and add some good articles to my writing portfolio. What I didn’t expect was how it would affect my writing on my own blog. I like to come here sometimes and just blurt stuff out, or share a random thought or two. I really have no rules or structure for this blog. It is purely me in the moment. Everyday Health is different. There I put on my serious and authoritative hat. My writing there takes a different level of commitment and energy from me, and last week I decided I was not up for submitting an article.

But that decision was not without consequence. I felt guilty for not following through on a commitment. And every time I considered writing a post here, the guilt of not writing one there kept me away. That is not what I signed up for. Bottom line, this blog is my priority. So I really had to take the time to consider where I went wrong and how I could correct it. Where I went wrong was in agreeing to writing there in the first place. It was my ego that fueled that decision. When they contacted me to be a featured blogger for them, I was thrilled by the compliment and it was that euphoria that motivated my decision. I did not consider how it would affect the work that I am already doing here and with the other components of FibroHaven.

Priorities: FibroHaven is my priority, in all its forms, and anything that takes me away from my commitment to it, or minimizes my experience with it is not beneficial to me.

I am no longer going to be writing for Everyday Health. I appreciate the opportunity they gave me, but I recognize that I have not given it my best, and I will not settle for doing anything less.

Perspective and priorities. I know you have heard it said, listen to your body. Pain is your bodies way of trying to tell you something. Sure the message with this flare may have been as simple as “it is hot,” but I’m choosing to believe there is a bigger message, and I feel confident that I focused on the right one. It feels good to be back!

I spent my twenties in a haze of parties and adventure. Oh the fun I had! I paid for that fun in my thirties. My thirties have been a decade of pain and frustration. After developing Fibromyalgia in my late twenties, I spent most of my thirties a slave to my symptoms.

But that is all changing. It started with this blog, and all the research I do to stay informed and up to date. Knowledge is power I tell you. I am learning more and more that I can feel better, and that there are things I can do to take back a measurable amount of control over my health. These are all resources and tips I have shared with you in the hundred plus posts I have written. I try very hard to practice what I preach, and the more I do, the better I feel.

So bring on forty. Forty is going to be my decade for health and healing, for wealth and wellness. I am ready for forty!

Pardon me while I spend this week celebrating. I have many things I want to share with you – like the great support group meeting I had last week attended by Lynne Matallana of the National Fibromyalgia Association. What a treat that was! But I am not going to be sitting in front of my computer too much this week. Instead I am going to be practicing yoga and meditation, going to lunch with family and friends, getting pedicures with my big sis, and honoring my health as much as possible to prepare for this next decade.

I am so looking forward to what forty will bring, and I am grateful to have this space and all of you to share it with. You are a gift I treasure each day. Thank you for taking the time to read what I write and occasionally leave a comment when the mood strikes. I appreciate you more than you know!

Happy Birthday to me!

I could tell you that I appreciate how thoughtful and well-researched Kathy is, or I could tell you that she challenges me to think about issues I might not otherwise, but instead I will just share with you her post. Be sure to bookmark the link to her blog. She is already well on her way there, and I know she would appreciate a visit from you. Enjoy!

Health Care Rumors

My Experience

I was in Indianapolis last week and saw something that totally amazed me. A group of at least fifty people protesting on the sidewalk in front of my hotel. I didn’t have my glasses on and I couldn’t read the signs so I sidled up to one of the door attendants and asked what was going on. “They’re protesting health care reform.” WHAT? Why in front of the hotel? “Because it’s illegal to protest in front of the capital” which is right down the street from where we were staying.

I decided to take a closer look and wandered closer to the protestors. The signs read things like “There is NO free health care!”, “Don’t take my Medicare from me!” “I’ll KEEP my doctor THANK YOU”, “NO MORE TAXES!” And other things that made me shake my head. Sorry, don’t remember them all but I do remember I was pretty aghast by the misinformation.

I had questions to ask so I stepped up the pace from wandering to purposeful…which is exactly when my husband started steering me in the opposite directions. He’s a federal employee and he knows me. He’d prefer I didn’t start anything in full view of his colleagues who were all milling about the lobby ready to go to dinner. I don’t blame him.

So I didn’t get to ask why these people were protesting, or more to the point, who had pushed their buttons and fed them some, as far as I could see, misinformation.

I believe we need health care reform. I appreciate Fibrohaven allowing me to share my opinions on the subject. Actually our Founder of Fibrohaven Support Foundation, Blogger, Writer and Holistic Health Advocate (I stole this off her Twitter page) refers to me as an “Information Savant” because I blast her with so much (usually relevant, in my defense) info…which I suppose is a compliment?

My Source

I do tend to dig around a lot for information, but I didn’t have to go far, in this case. Health care advocate (full disclosure: she was my advocate and I was able to receive disability retirement and health insurance because of her work. So I’m rightly biased.) Jennifer Jaff, of Advocacy for Patients with Chronic Illness, Inc has already done the research and blogged about her concerns for health care reform here. There isn’t much (if anything) about healthcare that she doesn’t know or can’t find out.

The Cliff Notes Version

Those people in Indianapolis were wrong. Public opinion is being swayed by rumors such as all our taxes will increase. If you make over $250K, it’s a possibility…everybody else, not likely. And health care reform will not force you to change doctors or insurance (as Jennifer says; “Poppycock!). Medicare is not going to go away and it appears that the prescription “doughnut hole” is going to be reduced. So there!

Who has been spreading the rumors? Some fingers point to Insurance Companies and “Big Pharma”. Others at the “rabid right”. The usual suspects, but it doesn’t really matter; the point is that these rumors are persuading the public (those folks in Indianapolis) that health care reform is a bad thing. And if the bills are going to make it out of Congress and onto the Presidents desk, somebody has to let our representatives know that we agree that health care has to be reformed.

There are a lot of good things going for the bills that have made it to Congress; coverage of pre-existing conditions, caps on out-of-pocket costs, and insurance companies will no longer be able to drop people because of health issues for instance. They are still hammering out how it gets paid for, but if they allow a public option “the Commonwealth Fund has issued a report that says that we will save $200 billion over ten years with a public alternative.” And the President will not support anything that is going to add to the deficit. So we can hope…

Do you care?

Why would you care? Health Care Reform affects everyone on some level. Especially those of us with chronic illnesses. While they aren’t addressing chronic illnesses specifically (you should see Jennifer’s comments on Facebook when she was trying to get an answer out of the white house!) however a cap on out-of-pocket expenses would be a good thing.

Why not keep an eye on it? Watch what is happening. Pay attention where you get your information. Don’t be like those people in Indianapolis. And make your opinion and your needs known. You can contact your representatives here.

What do you say to your representative?

Think about it for a minute. Why do you care? Express yourself. In my case my 25 year-old daughter has interstitial cystitis (which is in some way comorbid/related to fibromyalgia) and no health insurance. (She’s gone “off the grid” of health care. I won’t go too far into that, but I would prefer she was at least monitored!)  I have a sister-in-law in a similar position. I have a friend who had to declare bankruptcy when her son had leukemia, even though she had insurance. I know too many people like this. And dammit, my representatives are gonna hear about every last one of ‘em!

You may not agree that health care is a right, but the current situation cannot be defended and should not be maintained. The status quo will continue if Congress does not do its job. So give ‘em an earful!

I intended to write this follow-up post on my experience with Dr. Whitcomb and his Neurologic Relief Centers Technique last Monday, but have been sidelined by a bad flare-up. Yes, I do attribute my flare to the workshop and testing technique, but even so, I intend to give you a fair account of the workshop, although as with everything on my blog, it will be full of my opinions. It may be a lot to follow, so I hope I have managed to present a readable review.

The logistics of the day went like this:

I was initially invited to the workshop by a local acupuncturist who I will call “Dr. J.” The workshop began at 1PM on Friday, July 24. The local acupuncturist as well as several other local chiropractors actually paid for a training session with Whitcomb. They spent all of Thursday and Friday morning training to learn his technique. Then at 1PM on Friday, myself and the other patients whom each practitioner invited arrived for a lecture by Whitcomb. After the hour long presentation, we broke off with the practitioner who invited us to be tested to see if the technique would benefit us.

So What is This Technique?

The technique involves several minutes of firm pressure to either the anterior or posterior neck trigger points. The pressure is intended to release the tension on the nerves that travel through the meninges, and relive the pain and symptoms this tension causes. Whitcomb attributes most symptoms of FM to this compression. His name for this is meningeal compression, which he uses interchangeably with Fibromyalgia.

I brought three of my support group members with me. As you can imagine, given my impression of Paul Whitcomb and his clinic, I approached this event with a healthy amount of skepticism. Adding to my skepticism was the information one of my resourceful members shared with me about Whitcomb. He is still under investigation by the California Board of Chiropractic Examiners. There is still a possibility that he may lose his license for charges of administering “excessive treatment” and making “sensational statements which are intended to deceive the public.” He has recently closed his practice in South Lake Tahoe and is traveling nationwide to teach his technique. The reason he gave during the presentation for this move is to eliminate the need for patients to travel to him.

Whitcomb’s Presentation

The presentation Whitcomb gave was full of dramatizations: “Fibromyalgia patients are closest to prisoners of war.” “The Fibromyalgia patients who came to my clinic did not want to continue living.” “Eighteen percent of Fibromyalgia patients commit suicide.” I am really curious to know where he got that number, but unfortunately he did not allow for Q & A. He never once described Fibromyalgia patients as type A, as givers, or as overachievers, which in my experience is closer to the truth. Instead he painted a very bleak and desperate picture of us. Most of his claims were dramatic and over-the-top. He did not share anything about FM that I did not already know, but he did supply us with many statistics about his practice and the tremendous results he gets; such as 85% of his patients remain symptom free, only 6% lost the benefit of his correction and treatment after leaving his clinic. It makes me wonder why he would choose to close up shop.

As we moved on to the testing part of the workshop, we were all required to sign a waiver agreeing to let our test be recorded on video and used at their discretion. I refused, as did the other members of my group. I attended this workshop to research and share as much information as I could about Whitcomb’s technique. I would not agree to have my image shown in support of it and without my knowledge. Dr. J expressed our concern and they agreed to let him test us without being filmed.

I think because we were not being filmed, Whitcomb basically left Dr. J on his own, while paying closer attention to the chiropractors he trained and their patients who were being filmed. Also, Whitcomb unfairly sold Dr. J on training with him. He told Dr. J that “the test is the technique,” but then during the presentation he said just the opposite, because the chiros learning the technique also learned a particular adjustment that an acupuncturist like Dr. J is not legally qualified to perform. When I questioned Dr. J about this he said, “Yeah, I guess he kind of fooled me there.” So the “technique” that Dr. J paid to learn and implement into his practice is not complete. I really feel like Whitcomb snowballed Dr. J and any other non-chiro who paid to learn his technique.

And Now I Share Why I Have Been in a Flare

My first instinct was to not be tested, and I wish I had followed it. Instead I sat and watched many patients receive the technique and seemingly have instant improvements. One older gentleman with Parkinson’s had a noticeable reduction in his tremors. Another man was able to lift his arm above his head for the first time in months. I should note that we were not all fibromyalgia patients in the room, although the presentation was geared specifically to FM. After observing for some time, I was just too curious to opt out, so I hopped up on the table and let Dr. J proceed. After a short palpation he concluded I was sorest and tightest at the trigger points on the side of my neck below my ears. I concurred with this assessment.

He used metal rods with soft ends to place steady, firm pressure on my neck for five minutes. It did not take long for me to begin to feel nauseous. I tried to breath through it. Dr. J frequently check with me to see if I had a reduction in pain. I had rated my pain a 6 on the 1-10 scale, with 10 being worst. That day my neck, head, shoulders, upper back and hips were painful. I did not feel any change as I laid there. He asked me to focus on my hips. Laying still I felt no difference, but when I moved my hips, I eventually felt a reduction in pain. After the test, upon standing, my right hip was free from pain, and my left was improved. There was no improvement to my neck, head, shoulders or upper back.

I remained nauseous for sometime after the test. I had driven my members, and did not feel well enough to drive right away, so it gave us an opportunity to stay and talk about the workshop. The test had zero effect on two of my members, and two of us had a slight decrease in our symptoms. For one member the pressure was too painful to bear. Her pain level had been very low to start the day, and after her reaction to the test, Whitcomb remarked he wasn’t sure why she was even being tested if she had no pain. He told the second member who did not experience any relief that she was just being difficult. When I remarked to him that I did not experience any relief in my upper body he said I just needed to have the test performed longer. We all felt underwhelmed by the experience. It did nothing to change my opinion of him that his care for FM patients is motivated most heavily by his bottom line.

Conclusion

The proposed follow-up with Dr. J was to involve an initial consultation, and then three consecutive days of treatment, which would require three visits each day. After the three days of visits he would reevaluate and propose further treatment. It is expected to take weeks or months for complete healing, and then there is likely to be maintenance to assure the meningeal release holds. Given that I have been in a flare since receiving the test at the workshop, and that the improvement I felt in my hips lasted only an hour or two, I called Dr. J and told him I was not interested in pursuing this treatment. He then told me hed decided not to implement the technique into his practice, and that he too was underwhelmed by the experience. I have to say I think he made a very wise decision.

So there you have my experience and my opinion on the matter. I feel like a little guinea pig, but I am happy to have had this experience to share. When Whitcomb had his Web site up, there were a lot of testimonials of people who swear by his technique. One of my members who attended the workshop has personally spoken with several of his former patients who claim to be symptoms free. She was considering attending his clinic and did a tremendous amount of research. She was the most hopeful of us last Friday that his technique would benefit her, but unfortunately she was one of the two it did not.

If Whitcomb comes to your community to teach his technique, I cannot recommend that you attend his workshop, but as we all know, what works for one will not for the other. Even after this particularly bad flare, I still plan to keep an open mind about treatment options available and useful to us. But I most certainly will not be having my meninges released anytime soon!

NOTE: On Tuesday October 27, FibroHaven was moved from a WordPress domain to its own URL. In doing so the comments of each and every post have been affected. They are no longer chronological or nested (if they were a direct reply to a previous comment). It happened on each post, but because this particular post has been so active it is especially troublesome to try and follow the comments logically. I apologize for this confusion and we are trying to fix it, but it appears it may not be possible.

I can assure you no censoring or editing of comments has occurred. If you are interested and brave enough, feel free to read the comments and try to piece them together. I do warn you against taking things out of context as that has already happened. To avoid any more confusion, I am turning off comments on this post until the issue is resolved. If you have something you absolutely must say in response to this, feel free to email me at fibrohaven@gmail.com.

Cheers,

Dannette

10/28/09

Yes, I can! I am honored to say, I have been asked by Everyday Health.com to become their new featured Fibromyalgia blogger. It has been in the works for sometime, and I have been quietly posting for a few weeks now, but I have held off announcing it until their new blog software and redesign goes live. Unfortunately there have been delays, and since the link to my blog will remain the same, I have decided to go ahead and share my happy news with all of you.

Fibromyalgia Health Haven is the name of my Everyday Health blog. I will be contributing an article once a week, most likely every Tuesday. The articles there will still have my personality, but will be slightly less conversational. Where this is my happy place, Everyday Health will be more like a place of business. A few of the posts there now are shared here, but starting this week forward, each post will be unique on Everyday Health. I will probably do as I am now and give you a little heads up and nudge to my posts there, or if you are a tech savvy reader you can add my new blog to your reader and be notified of my new posts that way.

I will also update you when the redesign is complete. They are working hard on building and developing a clearer Fibromyalgia community, with more information and resources. It is a great and growing site. And if you register with them you can start your own member blog if you are interested. I have said it many times before, writing is therapeutic, and I recommend it to everyone living with chronic illness. But if you are considering starting a blog through Everyday Health, I advise you wait until the new blog software is up and the redesign complete. Their current software is not very user friendly.

I am very happy and excited to have been asked by Everyday Health to be a featured blogger. They found me here on Fibromyalgia Haven, and felt I have a strong enough voice and write interestingly enough to be a featured part of their health community. Is there a greater compliment? I am honored, and look forward to contributing my patient perspective to the Fibromyalgia resources on Everyday Health. I hope you will visit me there like you do here. Thank you all for supporting my voice here, and contributing to this opportunity for growth. You inspire me!

P.S. Today’s EH post is on working with Fibromyalgia. I would love it if you would leave a comment over there with your thoughts on the subject. Thanks!