Sometimes they happen when, after several days of feeling good, I wake up in the kind of pain that is impossible to reason. Or they happen when I reflect on how long I have been sick, and how long it is going to take me to heal. Sometimes they happen for no specific reason at all. I just get tired of the work, tired of the journey, and I just want to stop.

But I don’t stop – for too long anyway. And the thing that propels me forward and makes me keep showing up is this – the moments.

There are moments in our lives, moments that when they happen make us say: “Ah-ha, this is it! This is what it is all about.” Sometimes they happen when I am on my yoga mat and all the pieces come together and I feel nothing but joy. Or they happen at a support group function when I see a member’s face transform from agony to acceptance over the course of the evening. They can happen in a phone call, or from an email, or an exchange on facebook. They happen all the time. We just have to be aware and present to receive them.

Yesterday I scheduled a last minute group meditation at the Chopra Center. It is something we do together once a month, but I missed the one earlier this month, so I scheduled an extra one just for me. As I was heading out the door, for a moment, I had the urge not to go. It had been a long day – 2 1/2 hours of yoga teacher training followed by 90 minutes of gentle yoga at the YMCA. I was tired, and could easily have stayed home, especially since no other members had signed up to go. But I showed up – for me – because meditation nourishes me, and I was pleased to be joined by another member at the last minute.

Group meditation can be powerful, taking you much deeper into your practice, but it can also create unique challenges. A few minutes after we were seated in meditation, a late-comer burst in the door, literally crashed into the chairs, and then took about 3 minutes to get settled. THEN the very loud band started playing at the nearby restaurant (end of summer festivities). AND THEN the very loud late-comer began snoring and snorting! At one point I had to focus very hard to keep from laughing out loud at the absurdity of it all!

It is the most distracted I have ever been during a meditation, and yet I still felt restored by it. Walking back to my car I realized I was not nearly as fatigued as when I arrived. I am certain I was not in deep meditation for too long because of all the distractions, but however much I did was enough. I am so glad I showed up. If I had stayed home I would have been feeding my fatigue rather than nourishing myself. And it was great spending some one on one time with a member who need some guidance.

So all in all, there were several moments last night to keep me going – and keep me laughing. I cherish those moments, and that is why I keep showing up – because you just never know when one will appear.

How often have we struggled with our new reality?

How often have we grown weary and frustrated with trying to decide who we are and how we now matter?

How often have we wondered if it will ever get better?

For many years I ignored and hid my struggles. My symptoms were moderate enough for me to do so, and the only person who really knew my reality was my husband. But then my crash came and the days of pretending were over. I was faced with having to accept a version of myself that I thought was weaker, useless, less than. It took me a long time (and it is something I continuously work on) to determine that I still matter – that I can still have a purpose. I may never have the freedom again that comes with perfect health, but that does not mean I cannot have a meaningful and inspiring life. My mind still reflects back to the “healthy” me, and there are days I long to be her, but I have found a sense of value and purpose in the chronically ill me. I am whole, despite all that is missing. And truthfully, I like the new me more than I ever did the active and successful (and high strung and stressed out) former me.

Now how do I share my personal epiphany and encourage my new member without sounding preachy or all-knowing? Because if you read my blog regularly, you know I do not have all the answers. I am a work in progress, and I do a lot of my work in a very public way by sharing it here.

My message to my new member was this: Until you learn to let go of who you were, and accept who you currently are, you will not be able to move forward. You will be stuck trying to get back to a “you” your body is no longer capable of being. By continually looking back, you are fostering frustration and anger rather than acceptance and possibility. Examine who you are now, come to terms with it, and then make a plan to move forward.

Accepting where you currently are is not the same as accepting you will always be in this state. It is simply the first step in readying yourself to move forward. You need to be aware and honest with yourself so you can focus on doing the things that are within your ability that will help you move forward. Let go of what you used to be able to do, and work within your current capabilities. And it is work. But you can improve. You can get better. But only by letting go, and working to move forward.

We all have interests and desires and passions. Some we have had to let go and can be no more to us than comforting memories of the past. But others are still attainable and aid us in moving forward. For me, it is my writing. Some days my brain and body will not cooperate so I don’t even try. There are days when it is too miserable to sit at my computer, but my brain is active and swirling with great writing ideas. Now if I were totally together and on top of things, I would make myself comfortable on those days and use an audio recorder to capture the words running through my brain. But do I? No – not yet. I am a work in progress.

But here is the thing, by accepting where I am, I have opened the door and stepped out onto the path towards improvement and growth. I do not know exactly where I am going, I just know I refuse to stay still. Each day I carve out a new piece of my path. Somedays I make great progress, others I just kick some dirt around and examine the scenery. But the one thing I will never do on my path is just lay down and let the weeds grow over me. I like myself way too much to do that, and I am too excited to see where my road is leading.

I’ve been asked this question a lot since returning to work. What did you do before this? It is an interesting question and I don’t think I have decided how to answer it yet.

Do I tell them about the accident that brought my life to a screeching hault? Do I tell them about the months spent struggling to regain my ability to speak coherently? Do I tell them about the pain, the bouts of depression, the fatigue, and general disconnect from life? Do I tell them about starting this blog? Do I tell them how I was so inspired by this blog I started FibroHaven Foundation?

No, I don’t think I should. Essentially what they are asking me is how are you qualified to be in this position? What have you done in your past to allow you to do what you are doing in your present? They want to know what I have done, not what I have been through.

I had many successful years working with Fibromyalgia before the accident. I am plenty qualified. But I am also concerned about how my illness may be perceived. It is something we have discussed at support group meetings in the past. Do you tell your employer/prospective employer that you are living with a chronic illness? If ever there was a slippery slope…

My current employer knows all about FibroHaven and seems completely unphased by it. He is actually quite impressed with what I have accomplished. But early on in my job search I am certain I was not chosen for a position because my potential employer read my blog. He basically patted me on the back and said “You are doing great things with FibroHaven. Keep it up.” This came shortly after he mentioned he has two close relatives with Fibromyalgia. Do you think his experience with them prejudiced his value of me? I do.

So how much do I share? I am not sure. The only thing I am certain of is that I do not want my diagnosis of Fibromyalgia to influence what my colleagues think I am capable of doing. I want my actions to determine my value, not my diagnosis.

After my first week I am feeling pretty good. I am back in sales. It is what I know and what I have done well for many years. I am really excited about the company I am with now. Very smart, professional internet marketing firm. Great potential for me as long as I do the work and maintain my health. And that is exactly what I plan to do.

I think what I am most concerned about is maintaining balance in my life. For example, I did not make it to yoga this week. My body is letting me know loud and clear that I need to get to a class soon. I have a lot of motivation to make that happen.

I didn’t realize how much I missed being a working professional. I love getting dressed up, getting motivated during sales meetings, going out and meeting with clients and strategizing with them on business opportunities. It is a completely different kind of satisfaction than the satisfaction I have experienced with FibroHaven – plus I get paid for it! Bonus!

I know I am in the honeymoon period with my new career. I know there will be days when I will feel awful and either have to push through it or take the time to recover. But it feels great to contribute again, and it feels even better to know that I did the work to prepare myself to go back to work. I made the changes and the choices that I knew would benefit me. I made the commitment to myself to take back a measurable amount of control of my health and my life.

When I signed on with my new company, I did so as a long-term commitment. But FibroHaven is my long-term commitment too. I plan to document my progress here, sharing what is working and what is not. Discecting what I can do better, and continuing to explore the many alternative and holistic options for better health and wellbeing. I am putting different stresses on my body now, so I may require different tools – like acupuncture. I have always believed I would benefit from acupuncture but could never afford it. Now maybe I can. It is like investing in a good business suit. Neccessary!

So yes, the tone here will be changing – but the voice will remain the same – all me. I will have some big decisions to make about my support group too. That may be a commitment I cannot continue, but there is time to figure that out. I have time. I have options. I have hope.

I saw this great quote on facebook the other day and I put it in my status:

I have become my own version of an optimist. If I can’t make it through one door, I’ll go through another door – or I’ll make a door. Something terrific will come no matter how dark the present. ~ Rabindranath Tagore

There is always a door. One way or another, there is always a door.

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.

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 started down this path myself and I know how dangerous it can be. Isolation gives power to our pain and our symptoms because they become our focus, and the reason for everything – or should I say the reason for the lack of everything we used to know. The more time we spend alone in our symptoms, the more intense our symptoms seem. When I found myself becoming more and more isolated, and felt my symptoms becoming the focus of my everyday, I decided I needed to make some changes quick.

I needed community. I needed to be around people who understood and did not judge. I needed emotional support. So I sat down at my computer and did some research looking for a local support group. I did not find what I was looking for so I did the next best thing – I created FibroHaven support group. I wasn’t even sure if I had the energy to facilitate such an undertaking, but once I started the ball rolling, there was no looking back. I knew I needed to make it as easy on myself as possible, and fortunately I was already familiar with the great social networking site Meetup:

Meetup is the world’s largest network of local groups. Meetup makes it easy for anyone to organize a local group or find one of the thousands already meeting up face-to-face. More than 2,000 groups get together in local communities each day, each one with the goal of improving themselves or their communities.

Meetup’s mission is to revitalize local community and help people around the world self-organize. Meetup believes that people can change their personal world, or the whole world, by organizing themselves into groups that are powerful enough to make a difference.

I love their mission statement and believe in it wholeheartedly, and that is where I found the energy to form and organize FibroHaven support group on Meetup. I wanted a local community; I wanted to change my personal world and the world of others suffering with Fibromyalgia; I wanted to make a difference.

When they say they make it easy to organize a group they are not kidding. I followed their easy instructions and templets, and created a group website. They guided me the entire way. Then I followed their prompts to promote my group and I waited for members to join. Before I knew it I had several members and was ready to schedule our first meeting.

We began humbly last November in a coffee shop – seven of us sharing our stories, and excited to meet people who just “get it.” There was no need  for pretense or pretending; we had an instant knowledge and understanding of each other through our shared experience of living with Fibromyalgia. I soon found that I was not alone, and that there were many people in my own community who shared my need to combat the isolation of Fibromyalgia. For nine months now we have continued to grow, continued to share, and continued to improve our overall states of wellbeing.

So how does my little support group apply to you, and how can it help you alleviate your isolation? It is simply an example of the options and opportunities out there for all of us. I am not suggesting that we all start our own groups, because for many of you there might already be Fibromyalgia groups in your community. Click on the Meetup link above and check it out. There are over 80 Fibromyalgia, Chronic Fatigue and Chronic Pain Meetup groups across the country.

If there is not one in your community, consider joining a group that appeals to your interests. Do you knit? Are you a book worm? Interested in meditation or yoga? I bet there is a group for most anything you are interested in. Sign up, join, and then commit yourself to attend a function. If you combine something that interests and matters to you with people who have the same interests, you are bound to have a positive experience.

I cannot recommend Meetup enough. In fact recently President Obama commended them on the difference they are making in local communities across the country. I know I could not be a successful organizer without them. I have a new sense of purpose, am less isolated, and more hopeful because of my group. I wish I could invite each and everyone one of you to become a member. But since I can’t, please take a moment and research what kind of groups are available to you. Honor yourself and make the commitment to participate in life.

Are you able to work?

Did you have to change careers?

Do you work full-time or part-time?

Are you self-employed?

Do you work from home?

Are you on disability?

Can you work while on disability?

Topics for a very interesting conversation, right? (In fact the latest edition of Fibromyalgia Aware Magazine is focused on this topic. If you are not already subscribed, I highly recommend you do and start receiving this valuable resource.) But then you know what happens when you bring together thirteen passionate, enthusiastic and well-spoken women… I lost control of the meeting very early on, and had a great time letting the conversation go where it will. And I think the topic of work might have actually come up once or twice.

As usual, I was touched by many of the things shared, and impressed with the generosity and compassion of the group. There were sad moments and funny moments. Moments of anger and frustration, and moments of joy and hope. I took notes as I always do, and I thought I would share with you a few quotes from the day – starting with my favorite:

“You can’t be sad on rollerskates.”

“I’m rewriting my own life commandments.”

“My ego would love to do it, but I have to say no.”

“I do not fight my pain anymore. I breathe into it.”

“I am an athlete and competitor in my mind.”

I’m not sure if there is anything in my life I am more proud to contribute to than this group. I am usually left depleted after each meeting, but I happily give each ounce of my energy it takes. It fulfills a need in me for community and giving, and it hopefully fulfills a need for each member that makes the commitment to attend and participate – even on the days when their facilitator loses control!

It is remarkable to me the quality of people who develop Fibromyalgia and chronic illness. In fact I wrote a post on my Everyday Health blog with each person I know with FM in mind. I would love for you to read it. I think you may see yourself described there. Take a look and tell me what you think: Remember Who You Are

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