Information is Power, So I am Going to Get Me Some!
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.
Fibromyalgia can be caused by nerve pinching or irritation via stress. My spine is compressed in two spots, possibly causing mine. Nothing they can do now. I have had multiple MRI’s of my neck to see if anything can be done.
My doctors do believe if tension is relieved from the spine, fibromyalgia would be almost non-existent. They do believe in people getting ample amounts of sleep. This is a big issue in itself. OHSU is trying Xyrem this fall to help relieve people of tension and stress through better sleep. I need to try out this fall to believe anything myself.
Hope the workshop gives you information to help you. We need all the info we can get.
Cheers!
Teia
Well done post. Not sure I have FB. Two docs say yes, but don’t we think 4 AI diseases is enough? Haha.
Anyway, I agree with your approach: science and evidence will prove us out. : )
Sounds interesting I look forward to hearing your thoughts!
Dr. Whitcomb’s hypothesis sounds a lot like Dr. Holman’s. Dr. Holman is a rheumatologist in Renton (near Seattle) who’s work was highlighted in Fibromyalgia Network Journal (see a brief summary at http://www.fmnetnews.com/basics-issue.php )
Dr. Holman’s research has been published in the Pain Journal and received accolades. However, both my primary care doctor (whose office was on the same floor of the hospital as Dr. Holman) and my rheumy seriously questioned his conclusions. Every doctor has their opinion!
Keeping an open mind is very important. But skepticism (in the form of suspended judgement) is a valuable tool to use with that open mind. The fact that Dr. Sarkozi’s presentation was a sales pitch without discussion of the findings is a concern. I’m glad he’s willing to come back.
There is an answer, a solution (or many), to fibromyalgia. Thank you for helping us try to find the information, Dani. I really appreciate your herculean efforts!
“Sales pitch” was perhaps a poor choice of words. I wish I could have been there too.
Thank you for the offer…but the book is (or should be) already on it’s way. I was hoping it would arrive before I left, but I imagine I’ll be tearing through it when I get back.
I have a background that encourages healthy skepticism…but that doesn’t mean I always use it. When I’m hurting, I want it fixed. But I guess my point is that to me, skepticism isn’t the opposite of an open mind.
Maybe skepticism is a poor choice of word, also. Okay, how about a scientific attitude? http://wiki.answers.com/Q/What_is_the_scientific_attitude_and_what_attitudes_and_characteristics_define_a_good_scientist
Thanks for your post. I developed FM after spinal fusion at the c5-c6 and c6-c7 levels. But also had SEVERE menengitis years before and nearly died from it. You’ve got me thinking now wondering how all that menengial scar tissue could contribute to nerve tension.
Each one of us is our own scientist specializing in what’s best for us. I have a Ph.D. in Immunology and damned that it really hasn’t helped a bit in dealing with FM. What helps most is just listening to my body and using whatever therapy is most applicable at any given time.
The most disappointing thing to me is how much research is being done on pain and how little successful new medicine development comes from it.
So, did you get the test done at the seminar? What was your take on it?
Curtis
Hi fibrohaven we’ll wait for your next post.Btw can Fibromyalgia mimic the symptoms of other diseases? chicago chiropractor
oops, I typed fb instead of FM!
Except that it wasn’t a sales pitch Kathy. I wish you had been able to attend the meeting so you could have seen for yourself.
Dr. Sarkozi’s presentation was based on many years of patient treatment, research, and advocacy for Fibromyalgia patients. It was impossible to take all the information he has spent years accumulating, and everything he has written in his book, and fit it into a one hour presentation. Impossible!
Unfortunately there were many things he had to summarize, briefly detail, and refer us to his book for more information. Yes he was looking to sale copies of his book, but that speaks nothing to his commitment to and passionate advocacy for FM patients. He wrote the book FOR US, to HELP US because he believed it to be the best format to reach the largest audience. Should he not promote it? Should he not encourage each of us to buy a copy?
It is okay to be skeptical, but skepticism is best served if you first have as many facts as you can – not just one person’s opinion (and a opinion that she admitted herself was skewed). It was not a perfect presentation. My head is spinning with all the information he shared. It was a lot to absorb. At points I felt his presentation was tailored to his peers, not his patients, and I told him so. I am worried I may have the same experience with his book.
But here are the facts I am most taking away from the evening. He knows we are all suffering. He knows we do not get adequate care from our doctors. He believes that our pain is real and that it has a source, and he is trying to start a movement that will change/help all of that. Dr. Sarkozi believes strongly that the movement will succeed best if he takes it directly to the patients, not to his peers.
So, here is someone who cares, and wants to take action to change a medical system that disregards FM patients. Here is someone who believes we can all have a better quality of life. Here is someone willing to donate his time and travel anywhere in the country to share his work with support groups and patients. Why wouldn’t you want to own his book? Or at the very least be interested enough to borrow my copy when I am done reading it. It is yours if you want it. Just let me know.
Scientific attitude is great. Like I said before, we are all like a bunch of scientists trying to figure this whole FM conundrum out.
I am glad you ordered the book. I hope you will be able to attend our follow up meetings in September. The plan is to discuss it as a group, formulate all sorts of questions, and then invite Dr. Sarkozi back to discuss them. It should be very interesting!
Jeanne,
Wow, even PhD’s get sick! (joking)
Feeling a bit weary of professionals treating patients like we are all idiots. That’s all.
I have Rheumatoid Arthritis. I keep saying what we need are RA dr’s who have RA. Hahaha.
I have RA in my cervical spine. It does refer pain to arms and hands. This theory is fascinating.
Hi Curtis,
I have a lot to say about Whitcomb and his technique – blog post coming. I haven’t written it yet because I have been in a flare since the workshop. My first instinct was to not be tested, and I wish I had followed it.
I should have my post up Monday or Tuesday. My review will be fair, despite my personal reaction to the technique.
Yesterday I spoke with the practitioner who invited me to the workshop, and he has decided not to implement Whitcomb’s technique. I have to say I think he is making a wise choice. I will elaborate in my post.