One of the first things I tell new members of FibroHaven support group – above everything – we need to learn to be our own best health advocates. Fibromyalgia is a condition with no known cure. There is not, and likely never will be, a single approach to treat and manage the condition. Most doctors do their best within their limited resources in identifying and trying to treat each of the separate symptoms of the condition, but few are masters of treating the whole.

In their desire to bring you relief, you may leave with one prescription for pain, another for sleep, and still another for IBS. And when those fail to bring the desired results, or when the side effects are worse than the condition they are intended to manage, you start all over with a new prescription, and new hope that this time it will be the answer. And the cycle continues. Even for those whose symptoms are improved, and their days are made more manageable, the condition remains.

So our anger and frustration builds. We see doctor after doctor hoping this one can help – that one will know, and when they can’t, and when they don’t, we blame. We blame our doctors for not understanding, and we blame the pills for not working. We dwell in a state of feeling hopeless and misunderstood. We lose faith that it can ever get better. We become defeated, and in doing so our symptoms grow in strength and severity because we have relinquished our control. Fibromyalgia wins. We lose.

Can you see how depleting this continuous cycle of hope and disappointment can be?

It is this disappointment and incredible letdown that I believe can be alleviated if we reevaluate our expectations of the fibromyalgia doctor-patient relationship. Despite all efforts, our doctors are limited in the relief they can provide. If we understand this going in, and set reasonable expectations for what we hope to achieve under their care, we free ourselves to possibility rather than despair.

First, we must change our expectations of what a doctor can do.

A good doctor will partner with you and guide you to make the changes necessary to improve, but even the most fibromyalgia literate doctor cannot make this go away. Know this going in and you are much more likely to have a positive experience and partnership with the right doctor.

I did not start healing until I took control of my health out of a doctors hands. Once I understood they do their best, but their best is limited when it comes to fibromyalgia, I began to make the changes I needed to begin healing. Because I chose to manage my symptoms without the use of pharmaceuticals, my need and expectations of my doctor were reduce considerably.

I incorporated alternative medicine, finding tremendous relief from a holistic chiropractor. His treatment was unconventional in that he rarely adjusted me, but used laser therapy and also addressed my nutrition, introducing me to a gluten-free diet. He also worked to eliminate several infections I had including heavy metal toxicity.

Once my chiropractor worked with me to consider how nutrition played a role in how I was feeling (something, remarkably, I had never considered), I began to examine all areas of my life to see what changes I could make to begin living well with fibromyalgia.

I incorporated yoga to get moving again. I began meditating to help me find balance and peace amidst all the chaos of chronic illness. I became more active with my support group to connect with people who validate my feelings and experiences. And I began to improve. Slowly, gradually, I improved. But more beneficial than any physical improvement was my emotional improvement. I found hope.

By making these changes I took control of my health. A loss of control is something we all struggle with. When we give that control to our doctors, and they fail to make acceptable improvement in our lives, where does that control go? Do we keep giving it to others who, despite their intentions, are limited in their ability to help, or do we take it back. I say take it back.

Walk into your doctors office and let them know, I know you cannot cure me, but let’s see what we can accomplish together to make me better. Better than anyone, you can – and should – determine what is best for you.

Fibromyalgia is a Puzzle!

Do you remember the press release I shared with you about Dr. Sarkozi and his new book The Missing Pieces of the Fibromyalgia Puzzle? Well he is the guest speaker at my support group meeting tonight. I am very pleased to have been able to schedule him.

Dr. Sarkozi is a rheumatologist specializing in the treatment of Fibromyalgia. His technique is a blend of traditional and complimentary treatment, which intends to promote effective self-managed wellness. I am looking forward to his presentation. I personally believe very strongly that our best health will not come from Western medicine alone, but in combination with the many alternative and complimentary treatments out there. You can be sure I will share with you the details of his presentation and my impression of his book.

Not Interested!

Interestingly, I have a few members in my group who are completely uninterested in hearing his presentation. To them it is just one more person claiming they have the answer. There are so many claims out there of “the” cure and “the” answer, which turn out not to be the answer at all – just a way for unscrupulous people to line their pockets off the desperation and determination of some very frustrated chronically ill people. I believe that every possibility needs to be explored and considered though, because what if it just happens to be even a part of “the” answers we are all so diligently searching for.

Free Your Mind and Your Meninges

I try very hard to keep an open mind. So hard in fact, on Friday I am going to a presentation for a new technique based on the teachings of one Dr. Whitcomb. You may remember I was none too pleased with this controversial chiropractor’s claims of a “cure” for Fibromyalgia. If you need a refresher you can read my rant here and here, but I warn you – I was in a BAD MOOD! (I just read back over both posts for the first time, and am shocked actually at the frustration and desperation behind my writing. I am just realizing that in the months that have passed, I have grown a lot through this blog, and am currently much more at peace and open-minded.)

The workshop I am going to on Friday is based on the belief that Fibromyalgia symptoms are caused by a build up of tension at the base of our skulls that causes irritation to the nerves. The build up can be caused by physical or emotional traumas (stress). The technique being taught in the workshop releases the tension in the meninges, thus releasing the irritation to the nerves.

What do you think? Does this sound like it could possibly be beneficial in the treatment of Fibromyalgia? I’m not sure either, and that is exactly why I owe it to myself, to my support group, and to everyone who reads this blog to check it out. Not sure if I am going to participate in the free demo, but I will certainly be taking notes. And you can be sure I will be reporting back on it as well.

It began as an average Sunday morning – sleep in, go to a leisurely breakfast at our favorite cafe, hit the grocery store and buy something to grill for dinner, head back to the house, walk the dog and then assume the position – me at my computer and Rob wherever he lands with his laptop. Rob made a call to one of his friends who just happened to mention he was walking around Balboa Park at the Healing Arts Festival. “The what?” I said. “The Healing Arts Festival?” “What is it and why didn’t I know about it?” So I immediately got online and looked it up.

The festival was organized and sponsored by The Alternative Healing Network, 501(c)(3) non-profit of San Diego. Their purpose is to educate the community and promote the use of alternative medicine as a path to increased health and well-being. Sounds like a great event right? We thought so too so we hopped in the car and headed down there. 

It was a beautiful day in San Diego today and the park was packed. Tons of natural health booths, two stages with bands playing, yoga and qi gong sessions going on, and people everywhere. I am pretty sure dog beach was deserted today because there were almost as many dogs as people at the festival. So we walked around and I made as many contacts and connections as I could. I am always on the lookout for health and wellness information to share with my fibromyalgia support group, and a new potential guest speaker to come share their expertise at one of our educational meetings. I was not let down.

I don’t know what it is about the holistic community, but by far, they are the community most eager to help and share their knowledge and skills with my group. They are truly and genuinely interested in what I am trying to achieve as a group leader, and also in helping each and everyone of the members improve our health and well being. They are sympathetic and understanding of chronic illness, but believe strongly that our health and quality of life can improve, and they are passionate about helping us learn how. Of course they have a financial interest when they donate their time to come speak at our meetings. Of course they are hoping to gain new patients and of course their services are not free. They did not spend 9 hours today manning their booths for the simple joy of it. They did it to increase community knowledge and awareness of alternative medicine and healing. Participate in a yoga session, lay down for a free massage, and then sit down and experience the healing effects of music. Sounds like a nice time doesn’t it? And what a bonus to head home feeling better and stronger than when you left. Some of the practices may call for a more open mind then others, but they are all meant to help heal the body, achieve emotional freedom, and improve ones quality of life. 

I am overjoyed with the contacts I made today, especially the great contact I made with the Chopra Center, and so glad that we made the spontaneous decision to head down there. Of course it means that now I am sitting here writing my post at 8:30 at night. But as long as I get it in by midnight, I will get an A on my writing assignment for the day. I should have been a teacher. I am such an easy grader!

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