A Call to Action for Fibromyalgia

A notice from the American Chronic Pain Association which might be of interest to folks (or folks who know folks) with fibromyalgia

The FibroCollaborative Roadmap for Change:

A Call to Action for Fibromyalgia

WEBCAST

February 5, 2010

12:30 pm – 1:45 pm CST

Please join the American Chronic Pain Association in listening in to an important Webcast about how we can work together to help improve the lives of people affected by fibromyalgia.

The Webcast will unveil a new Call to Action for Fibromyalgia, a comprehensive roadmap designed to prioritize and address the unmet needs of fibromyalgia in the United States.

The Call to Action is a product of the FibroCollaborative Advocacy Working Group, a Pfizer initiative in collaboration with 16 medical/professional and advocacy organizations. The Group’s focus is to improve the health and well-being of people with fibromyalgia, one of the most common chronic, widespread pain conditions in the U.S.

The Webcast will also feature new topline results from a national landmark survey on primary care physicians’ attitudes and perceptions about fibro and how it may be impacting diagnosis and care.

Join us at http://fibrocollaborative.stream57.com/february5 on February 5 for the live Webcast, which is streaming from the American Academy of Pain Medicine Annual Meeting.

For more information, visit the ACPA website.

[Via http://phylor.wordpress.com]

Writing under the Influence

I have recently been diagnosed with fibromyalgia and chronic fatigue syndrome and what followed my diagnosis was a lot of trial and error with various medications. I have been on medications that have caused me to swell, gaining twenty pounds in a little over a month; medications that made me feel suicidal and hopeless; medications that gave me severe migraines; and medications that simply did not work. Once I realized that my deep, suicidal depression was being caused by the medications I was taking, I stopped taking them all swearing never to take medication again. What followed? The most horrific pain and fatigue I have experienced in my life. It felt similar to the aftereffects of a car accident where every part of your body hurts combined with what I can only describe as a cellular-level fatigue. My brain would tell my body to move, but my body could not oblige. It was as if my body was weighed down with lead and despite its desperate desire to move, it could not. Within two days I was sitting in my doctor’s office broken.

I have a bad history with medications. Most often they have an opposite reaction. For example, sleeping pills give me an enormous amount of energy. Prescribing medication for me can be a daunting task. My doctor was willing to take on the challenge. This time she prescribed Strattera, an ADHD medication. Though I was diagnosed with ADHD ten years ago, I had not taken medication for it since finding out I was pregnant in 2004. I really enjoyed the chaos of my ADHD mind and had a difficult time with all the focus the medication gave me. It had significantly hindered my ability to multi-task so I did not return to it after giving birth. I had not taken Strattera before, though, and, after a day of deliberation, I decided to take it. Miraculously my bone-deep pain was nearly gone thirty minutes later. The only problem was that it wore off after about eight hours. So my doctor prescribed Neurontin for the evening. It was intended to help me sleep, but it, too, gives me a boost of energy. I am still having great difficulty sleeping, but at least I am pain free most of the night. I still wake up with the cellular-level fatigue accompanied by pain and burning in my legs, but now I know I have something available that brings relief.

What does all this have to do with writing? Well, my writing has suffered since I started taking Strattera and Neurontin. Though there were many times that the pain was too severe for me to focus on writing, there were also many times that writing helped me to escape the pain. In those times, I could visually walk through the scenes I was writing about and feel the experience fully. This amazing ability has been shut down. My writing has become more analytical rather than lyrical. It is more straightforward rather than uniquely expressive. It has become more tell than show. I find myself quite often staring at the blank page creatively mindless. I can no longer conjure the images that allowed me the full sensory experience of what I was writing. Instead, I am seeing the blank page and ONLY the blank page. So, the dilemma before me now is: Do I write under the influence of pain or under the influence of medication?

[Via http://thenightwriter.wordpress.com]

Gluten and Inflammation - A matrix energetics / integrative manual therapy approach

When looking at the best ways to help someone with signs and symptoms related to gluten sensitivity, we have many tools to use.  First we like to get a 100% gluten free eating plan started.  The research over the past 10 years shows that if someone with an auto-immune condition, joint or bone pains, fibromyalgia and other conditions goes gluten-free, many times most if not all of their symptoms improve and can even clear completely.

One reason we think this happens is purely physiological.  The immune system cranks up and starts attacking the person when gluten is being eaten.  By taking gluten completely out of the diet, the immune system calms down and rests and the body can heal.

But another reason we like to use gluten free programs is that because so many people have benefited from a gluten free diet, because so many researchers have found it helpful and because so many practitioners have had similar results taking their clients off gluten, there is an enormous morphic field concerning gluten sensitivity.  What I mean by that is that there is information in the field so that people who “tap into” this gluten-free program benefit from the energetic field of all the people who have been part of gluten sensitivity research, treatments and eating programs.  This may be new information to you.  If it is you can read more about morphic fields at http://www.sheldrake.org/homepage.html. This is a powerful way to benefit from a gluten free eating plan.

Using Integrative Manual Therapy, the work of Sharon Giammatteo, PT, PhD, we are able to use structural and physiological manual therapy methods to help fix up the cecum (large intestine) and the other areas affected by gluten.  Also through using supplements, most notably zinc, chlorophyl and manganese B 12, along with high quality fish oils, both the structure and the function of the GI tract can regain health.

This Integrative Manual Therapy (IMT) approach used to take many hours to fix up a colon ( GI tract)  and was mostly useful if a client agreed to a 100% gluten free program.  Now we use Matrix Energetics, a transformational way to access the healing potential of the zero-point field. By using Matrix Energetics, we can tap into whatever is useful to help someone heal or transform.  We can use IMT, Matrix, supplements, and other healing modalities all under the umbrella of Matrix Energetics.  Matrix Energetics basically super-charges any other modality we choose to use to help someone.

Here is just one success story from one of our clients.  We saw this client for only 6 treatments over the course of a few months.

“I sat through most of my acting class yesterday with very little back

discomfort (3 hour class)  A miracle!   My left shoulder is moving

easier with less discomfort……….a miracle!  I’m not taking any

herbs or supplements for anxiety or depression because I don’t need

them……..first time in many many years…..a miracle!  I’ve cleaned

out an entire drawer of many bottles of supplements that I don’t feel I

need anymore and made room for a gizmo that makes noodles out of

zucchini………yea!

I’m not afraid of the future.”

W.H. 2009

For information on the physics behind matrix energetics you can check out these interviews and lectures at http://www.theburnhamreview.com/Scalar_Wave_Physics.php

For more information on gluten sensitivity you can check out http://missionhillspt.com/gluten_sensitivity

For more information on Integrative Manual therapy please check out centerIMT.com

For more information on Morphic Fields you can check out http://www.sheldrake.org/homepage.html

For a newsletter on gluten sensitivity you can check out www.missionhillspt.com/newsletters

for more information on gluten sensitivity there is a great summary article by Dr. Mark Hyman at http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

Ralph Havens, PT, OCS, IMTC

[Via http://missionhillspt.wordpress.com]

My Fibromyalgia Hasn't Gone Away

Just because I haven’t written about my fibromyalgia in a while, that doesn’t mean it has gone away or been cured.  It’s been with me for the past 44 years and I suspect it will be until the day I move on to the next part of life (which had damned well be fibromyalgia free!!).  There has been no cure.  There are some treatments that help, chief among them learning to listen to your own body’s signals.  But no cure.

So why haven’t I been complaining as much?  One reason is that a medication my doctor finally got me to try has actually had a positive impact on me.  The reason I resisted is that it’s an antidepressant and I wasn’t depressed.  But since I know fibromyalgia is related to brain chemistry and hormones, I agreed to try Cymbalta.  Well, wasn’t I surprised.  It helped immediately for both pain and fatigue.  Even fibro fog hasn’t been as much of a problem.  It was evidence for me that my assumptions about fibromyalgia are on target.  Bear in mind that this medication has helped me. I cannot say it will help you.  I cannot say, if it does help you, that it will help as much or in the same way.  But it has helped me and it has reinforced my beliefs about the source of fibromyalgia pain.

I have still had fibro flares.  One particularly nasty one found my right shoulder and upper back locked up tight in a painful spasm for 5-6 days – I forget exactly how long because the medications for pain made me a bit foggy.  I still got things done, but not much.  Then, as the right side began to relax, the left side flared up in the same place.  I figured one of two things had happened.  Either the left side was feeling “left out” (pardon the pun) and wanted some attention, or I had overcompensated by using the left more than usual and it was clearly not happy about being overworked.

My current regimen is:

• (Most important & most difficult) Keep stress as low as possible
• Cymbalta
• Ibuprofen & Flexeril for flare-ups
• Thermacare heat wraps when I feel a flare-up in the making – sometimes will cut it off
• Being aware of posture & body mechanics
• Exercise – just walking on my treadmill for cardio
• Meditation & conscious deep relaxation
• Keeping my mind busy on things that interest me & I care about – it’s hard to think about pain when your mind is engaged in something you enjoy.

Keeping fibromyalgia at bay is a never-ending battle.  But it is a battle worth fighting!

So if you have fibromyalgia, I hope this post has given you some ideas or some hope.  It can’t be cured right now.  But you can live a happy, productive life in spite of it.  I should know, after 44 years!

[Via http://eclecticwoman.wordpress.com]

What Your Doctor Doesn't Know About Fibromyalgia

I was still suffering and without hope when I decided to write this book, the day I brought home some dog-eared, yellow-highlighted books from the house of a deceased woman I had never met. I had stopped at an estate sale only to find that the woman who had lived there was a 56-year-old woman with fibromyalgia. The neighbors who were there weren’t sure how she died; perhaps an overdose, they suggested. Maybe a heart attack. I bought most of her books even though I already owned many of them. I wanted to feel close to her. I could sense her desperation as I turned the pages, as she highlighted various remedies, every one a highly popularized course of action for reversing the disease. I decided then that I wanted to tell the truth about the hopelessness that FMS patients feel when their doctor’s explanations and lectures fail and about what happens when you have tried every therapy in print and still can’t control the pain. I was angry that conventional doctors had not diagnosed me correctly and ignored some of the early signs of FMS. When I complained of insomnia, wakefulness in the middle of the night, headaches, daytime sleepiness, aches, and pains, I think my doctors attributed it to the fact that I was female, menopausal, thin, and working at a high stress job. I was given antidepressants and Valium. I spent years paying for the advice of doctors who knew less than I did about FMS. Even after I was diagnosed with FMS, I spent hundreds of dollars looking for answers in many books that generally prescribed light exercise and a healthy diet. Finally I found the people who could help me – doctors who had done their homework, acupuncturists you could trust physicians who understood chronic pain and treated patients like human beings. An enlightened pain doctor once told me that she was confident that doctors would soon find a way to treat FMS, if they could only keep the patients alive long enough. At the time, I didn’t know she would be one doctor who was right. Too many patients have been sent to their deaths by an absolute inability to endure more pain, aided by well-meaning, but ill-informed, doctors who failed to help them by dismissing their symptoms, withholding pain medication, and failing to do a complete search for underlying causes. FMS isn’t listed on a death certificate as a cause of death, but it can be deadly. FMS patients die from drug overdoses, lethal combinations of drugs, heart attacks and strokes caused by unendurable pain, withdrawal from drugs, and other causes linked to FMS. Sure, it would be easier for me to write that we are all going to recover completely immediately. Too many times, the helpful books I read (and there are some that were not) didn’t seem to address the panic, helplessness, despair, and severity of pain I was feeling. “If we can just keep our patients alive long enough to find a treatment,” my pain doctor said once, sighing as she handed me a prescription for Percocet. This is the story of staying alive.

[Via http://lindameilink.wordpress.com]

Fibromyalgia Is A Central Nervous System Disorder

If you have fibromyalgia, or know someone who does, please contact our office for a complimentary phone consultation, or to schedule an appointment* with Dr. Shook (828) 324-0800.  We can also be reached by email at drshook@alliancechiropracticcenter.com.

*We currently have a waiting list of one week for new patients. After Dr. Shook’s presentation we anticipate a three to four week waiting list for new patient appointments.

Dr. Shook will be presenting “Breakthrough Treatments for Fibromyalgia” on Monday, January 18th, from 12:00PM to 2:00PM, at the Health First Center in Valley Hills Mall. The presentation will be covering Dr. Shook’s unique treatment of fibromyalgia. It is FREE to attend, but you must register in advance because space is limited. *The presentation is filled to capacity for Monday the 18th and there is a waiting list* Due to demand, Dr. Shook will be presenting again on Monday, February 22nd. Space is limited, call Health First in the mall at the number below to reserve your seat. (828) 485-2300

[Via http://drbradshook.com]

Neuragen Experiment: Day 5 observations

Reviewed my pain diary and notes from yesterday and can conclude that at least, anecdotally, (is that the right word?) Neuragen appears to have some affect on the level of pain, especially breakthrough pain. The caveat is, though, that the ointment needs to be applied BEFORE an increase in the base pain level is experienced. The applications should be no more than 6 hours apart; sooner depending on the kind/level of activity, and “feelings” in the cheek area. Implications for the dental pain are less obvious; but given that, the relationship of teeth pain to face pain is unclear, this aspect of the experiment will take more time and analysis.

An interesting “side effect” of the experiment is increased awareness of the spasming (not in my Spell Check) on the right side of the neck (the non-Neuragen side) and tightness/pain issues with the back of the neck and upper spine. Since, as the old commercial goes “a little daub will do ya,” I may try the ointment on these other areas. Issues with the back of the neck and upper spine relate to osteoporosis, arthritis and activities/positions; the spasms are more “fuzzy” in terms of cause, although I know certain neck/head positions and activities seem to trigger more neck spasms that in turn can trigger pain, tightness, and migraines. As I have intermittent dental pain on the right side as well, there is a chance that these spasms are somehow connected.

Over the last couple of days, I must confess, I had a crisis of self-confidence. Part of my “carry-around” luggage has always been wanting to “fit in,” be part of a larger community, to have my opinions and feelings be noticed, acknowledged and deemed important by that community. The older I get, the more I have stuffed into my carry-around luggage, so the harder it can be to unpack. I started blogging for a variety of reasons, but deep down, the lonely little kid who wanted to fit in thought that the virtual world could provide what the real world hadn’t: a sense of belonging, of mattering, of being on the inside looking out. For that kid, having met some incredible people didn’t fill the void; when the adult me regained some measure of control (no, I don’t have multiple personalities), there was more appreciation of what I have, not what I want or wish for. I’m not always sure if it’s the lonely kid or the shaky adult who excitedly checks to see if a comment to a forum has been acknowledged by other members, who feels the familiar disappointment when my contribution seems to kill an active discussion thread, or is slighted by an unreturned email. So, I apologize if I slighted anyone by bemoaning the lack of response to my postings. This blog, even if no one read it, is a step away from the inner child. I even included a front view of me “down on Main Street” with a toy-like digital camera bought to take “remembry, not quality, pictures. Perhaps I’ll post a photo-essay. And, I wonder what tomorrow will bring.

“new” fibromyalgia links, one about fibromylagia and exercise, the other a personal discussion by hibernationnow.

[Via http://phylor.wordpress.com]

Gluten Sensitivity - Dr. Mark Hyman - From The Huffington Post

http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

This is a very well documented and referenced article by Dr. Mark Hyman on gluten sensitivity and how it can masquerade as a number of ailments and diseases; over 55 diseases recognized by the American Medical Association as having links to gluten sensitivity.  If you or anyone you know has any of these conditions please pass it along to them;  You could save their life.  Gluten sensitivity has been linked to a 30+% increase in death in the medical literature.

Here’s a partial list of conditions caused by gluten sensitivity:

osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, canker sores, (v) and rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases. Gluten is also linked to many psychiatric (vi) and neurological diseases, including anxiety, depression, (vii) schizophrenia, (viii) dementia, (ix)migraines, epilepsy, and neuropathy (nerve damage). (x) It has also been linked to autism.(ix)

For more information please email me and I can send you more research and sources.

my best

Ralph Havens PT, OCS, IMTC, CMe

orthopedic clinical specialist

certified Integrative Manual Therapist

certified Matrix Energetics Practitioner

[Via http://missionhillspt.wordpress.com]