THE ADVOCACY PACKAGE

"If the creator had a purpose in equipping us with a neck,
he surely meant us to stick it out."
-Arthur Koestler

How to be an advocate.

For people who suffer chronic disorders, advocating can be therapeutic. It is about using your voice to help others by supporting a common goal.


TEN TOP TIPS

1) Pick a topic you are personally riled up about. For instance, the proposed criteria for diagnosing fibromyalgia or the criteria you want to see used from diagnosing ME/CFS, the lack of insurance reimbursement for therapies considered alternative, a name change, the right to have pain managed reasonably or the politics of getting the “right” research funded.

2) Share, share, share. May our spirit fill us with understanding of victory and defeat, the gift of collaboration, the wisdom to choose the right path, and inspire us to hope.

3) Respect your limits. I set a timer, which keeps the respect for my limits in check.

4) Set achievable goals, avoiding the pitfalls of burnout. Do not set out to change the world, set out to express your personal thoughts, and then change the world. It is the common thoughts of many that make us a community, the stream.

5) Accept your right to be heard. Do not let others intimidate you. Whether it is time, talent or treasure, all are important. A rock pitched into a stream changes its course for eternity, be a rock. It is the common thoughts of many that make us a community, the stream.

6) Accept that you might not always get a reply, but believe that somebody is listening. We never know how far or how wide we are received.

7) Stay organized. There will be days when your brain works in tandem with the keyboard and others when everything is foreign. Important for a fogged brain is to stay on task, decide on key points and make a check list so you can leave and come back.

8) Carry your advocacy into your own healthcare. Let your healthcare providers know what you are doing and if there is anything they might like to contribute. Granted you need the right healthcare provider, if you don’t have one, try to find one.

9) Provide a mechanism for follow up by journaling your advocacy efforts. I fie every advocacy piece I write with the contact information. If I get a response, I copy and paste it into that same word file with the date and time.

10) Remember you are on a team. You are not alone, many choose advocacy as a way of coping with change. Besides the obvious, extend your realm; reach out to co-workers, friends, spiritual groups, or immediate and extended family. Enrich your relationships by sharing the recent research, you might change the way others see us.

All it takes is the will to be an advocate. We speak out and vent our discontent every day to each other. All the advocate is doing is reaching out to a larger perimeter of people. People who may be in a position to have an impact on fibromyalgia, chronic fatigue syndrome or chronic myofascial pain, finding the cause, education for the “right” treatments or fundraising for research. Advocates need to know they have backing from the community they are trying to help. Share what you do and support each other.

Being an advocate give a sense of having some control. Every motivational speaker will tell you, “if you want to be successful, surround yourself with successful people.” I say, “If you want to be an advocate surround yourself with people of like goals.”

"If I have seen further it is by standing on the shoulders of giants."
--Isaac Newton

Finding others with common goals

So, now we know you want to be an advocate, you want to have your voice heard. How do you go about it?

• Web search links to personal stories others are willing to tell, see who they support and do some research on them.

• If you are interested in medical research, go to www.pubmed.com and do a search for articles on fibromyalgia, chronic fatigue syndrome, or chronic myofascial pain from trigger points. Contact the author, usually there is an email for at least the lead author. Note who is supporting the recent research and look for people with a common interest.

• Be suspicious of any web pages that do not list resources. There is no gatekeeper for the internet.

• Avoid those asking for money without giving you valid reasons for wanting it, such as supporting research, providing education, speaking out politically. If they are using the money for the right reasons, believe me, they will make sure you know it.

• Reach outside your home base. In other words, look at what others outside the community are doing for you and contact them. This might include a chiropractor, physical therapist or massage therapist that specializes in trigger point therapy, an organization that specializes in pain advocacy or a group that works with neuroimmune or rare disorders. Network with them.

• Recruit people from your own local support group, or buddy up with someone from an online support group.

• Give credit where credit is due. Once you get yourself out there, you will be amazed at the amount of networking that goes on, people putting people in touch. Of course there are some who are very territorial; personally, I steer clear of these folks. You want to align yourself with people of like philosophy. Mine is that collaboration is the key to success. Why try to reinvent the wheel when there is so much to be learned from others who have walked the path before you?

• Be aware that there are people who take exception to anything you do. We are all tired, many of us in a fog, sleep deprived, and in pain so we don't always come off right either. Those who continue to rebuff you are not worth the waste of your energy. They for their own reasons are not likely to come around to your way of thinking, and there are plenty of people out there that are ready to hear what you have to say.

• Staying positively focused as an advocate is important. I still boo hoo to my close friends, but I keep it to a minimum in the community I serve.

Here is a copy of my latest advocacy letter to over 50 people (personalized of course) It is due to hit the air waves for the month of May. Feel free to copy any of it or all of it and use it for yourself. The only thing I ask is that you personalize it in some way so it will have a greater impact. All you have to do is send it to the contacts listed and you will be your own best advocate. Don’t be the person standing waiting for help to arrive assuming someone else has already called 9-1-1.

This is my 9-1-1 to you.

You may also find the letter at http://fmcfstriggerpoints.blogspot.com/2011/04/may-letter-on-proposed-fm-diagnostics.html

RE: Diagnostic Criteria for Fibromyalgia

Dear Ladies and Gentlemen, (Personalize unless it is being sent to multiple recipients)

First Gear “The hook” – A statement that will engage the reader

You probably already know that fibromyalgia is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But did you know that currently the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, even though the study by Bazzichi L et al) shows Hashimoto’s patients may have a link to fibromyalgia? Did you know there is a higher incidence of restless leg syndrome in the fibromyalgia patient than the general public? Did you know that scientists believe what were once thought to be specific diagramed “tender points,” used to diagnose fibromyalgia, are now thought to be knotted up pieces of muscle fiber called trigger points? Or that these trigger points, which are easily felt by a trained examiner unless the muscle is too taut, or the trigger point is deep beneath other muscle or behind bone, can radiate pain to other parts of the body? While it is possible that more research is needed to include the presence of Hashimoto’s or restless leg syndrome as part of the diagnostics, it should be considered in assessing the FM patient, and the research on the association of myofascial trigger points (resulting from excessive release of acetylcholine across the neuro-muscular junction) as peripheral pain generators to FM is staggering. (See the citations in the copies of letters attached).

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Second Gear “Personalization”

Fibromyalgia is a biological disorder. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep. See what you come up with and then try to tell me it is all in my head.

Third Gear “History” (What is your relationship with this piece. Are you outraged? Have you taken this issue up with someone else? Are you in agreement with something someone else has had to say? You are welcome to make reference to my letters stating it is the correspondence from Celeste Cooper)

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

Fourth Gear “State your case”

While the authors of the preliminary proposed criteria for diagnosing fibromyalgia have done a good job defining the central and autonomic effects of FM, it is not complete without the assessment of the body-wide myofascial trigger points (MTrPs) fibromyalgia patients deal with. Restless leg syndrome and its counterpart periodic limb movement, found at greater rates in FM which may be a factor in sleep quality, may also be related to the dysfunction caused by peripheral MTrPs. And it is a patient’s right to have their metabolism restored in the face of thyroid disease and not overlooked as a symptom of fibromyalgia.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Full Speed Ahead “Provide for follow up”

Can we, the fibromyalgia community, and most likely someone you know personally, count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. I don’t expect that assessing and addressing these additional issues will cure fibromyalgia, however we need a scientifically based protocol that is consistent among all those treating, researching, and educating this disabling disorder.

One cannot or should not ignore the science set before us. We need to move the science in the right direction until a cause and a cure is found. We need validation so that our government and others will help support the research necessary to help fibromyalgia patients get back to work, and lead productive lives. We need to be able to count on someone. If you are unable to facilitate, would you share information here with someone who is in that position, so that we maintain forward momentum.

Sincerely,
Signature [Type or sign your name here.]

Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)

You may contact me at ….
For more information visit, www.TheseThree.com

Attachments: [Name any attachments that support your letter and its content.]

October 20, 2011 letter
Letter to Mr. Clark, Public Liaison, NIAMS (NIH)


Copy: [List anyone you feel would benefit from knowing you have sent out your letter]

Resources: [If you have made reference to a particular article or research be sure to list the full citation].

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.

Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

9-1-1 FM Awareness Letter on Proposed Diagnostics in Template Form for Using

The following is my letter which will be going out through the month of May to various physicians, researchers and professors. I have provided it in template form so that you may use it in anyway you desire. Feel free to use it as is as long as you state that it is written by Celeste Cooper, or change it up to make it yours.

Don’t be the person standing waiting for help to arrive assuming someone else has already called
9-1-1.

This is my 9-1-1 to you.

RE:
Diagnostic Criteria for Fibromyalgia

Dear Ladies and Gentlemen, (Personalize unless it is being sent to multiple recipients)

First Gear “The hook” – A statement that will engage the reader

You probably already know that fibromyalgia is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But did you know that currently the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, even though the study by Bazzichi L et al) shows Hashimoto’s patients may have a link to fibromyalgia? Did you know there is a higher incidence of restless leg syndrome in the fibromyalgia patient than the general public? Did you know that scientists believe what were once thought to be specific diagramed “tender points,” used to diagnose fibromyalgia, are now thought to be knotted up pieces of muscle fiber called trigger points? Or that these trigger points, which are easily felt by a trained examiner unless the muscle is too taut, or the trigger point is deep beneath other muscle or behind bone, can radiate pain to other parts of the body? While it is possible that more research is needed to include the presence of Hashimoto’s or restless leg syndrome as part of the diagnostics, it should be considered in assessing the FM patient, and the research on the association of myofascial trigger points (resulting from excessive release of acetylcholine across the neuro-muscular junction) as peripheral pain generators to FM is staggering. (See the citations in the copies of letters attached).

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Second Gear “Personalization”

Fibromyalgia is a biological disorder. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep. See what you come up with and then try to tell me it is all in my head.

Third Gear “History” (What is your relationship with this piece. Are you outraged? Have you taken this issue up with someone else? Are you in agreement with something someone else has had to say? You are welcome to make reference to my letters stating it is the correspondence from Celeste Cooper)

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

Fourth Gear “State your case”

While the authors of the preliminary proposed criteria for diagnosing fibromyalgia have done a good job defining the central and autonomic effects of FM, it is not complete without the assessment of the body-wide myofascial trigger points (MTrPs) fibromyalgia patients deal with. Restless leg syndrome and its counterpart periodic limb movement, found at greater rates in FM which may be a factor in sleep quality, may also be related to the dysfunction caused by peripheral MTrPs. And it is a patient’s right to have their metabolism restored in the face of thyroid disease and not overlooked as a symptom of fibromyalgia.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Full Speed Ahead “Provide for follow up”

Can we, the fibromyalgia community, and most likely someone you know personally, count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. I don’t expect that assessing and addressing these additional issues will cure fibromyalgia, however we need a scientifically based protocol that is consistent among all those treating, researching, and educating this disabling disorder.

One cannot or should not ignore the science set before us. We need to move the science in the right direction until a cause and a cure is found. We need validation so that our government and others will help support the research necessary to help fibromyalgia patients get back to work, and lead productive lives. We need to be able to count on someone. If you are unable to facilitate, would you share information here with someone who is in that position, so that we maintain forward momentum.

Sincerely,
Signature [Type or sign your name here.]

Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)

You may contact me at ….
For more information visit, www.TheseThree.com

Attachments: [Name any attachments that support your letter and its content.]

October 20, 2011 letter
Letter to Mr. Clark, Public Liaison, NIAMS (NIH)

Copy: [List anyone you feel would benefit from knowing you have sent out your letter]

Resources: (If you have made reference to a particular article or research be sure to list the full citation).

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.,

Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

THE TREATMENT OF FIBROMYALGIA by Dr. John Whiteside with comments

Dr. John Whiteside is an Australasian College physician and Fellow of the Australian College of Nutritional and Environmental Medicine. He specializes in treatment of myofascial conditions including fibromyalgia. He had the grand opportunity to be mentored by and study under the world renowned expert and pioneer of myofascial medicine, Janet Travell, MD and lectured with David Simons, MD who later joined Dr. Travell in her research and authorship of medical textbooks regarding myofascial trigger points.

Hear what Dr. Whiteside has to say regarding myofascial trigger points in fibromyalgia, perpetuating factors like: amalgam fillings, hormonal deficiency in female and male fibromyalgia patients, hypothyroidism, diet, and supplements. You will also read about compounding pharmacies, myofascial therapies, physical therapy, and holistic treatments.

THE TREATMENT OF FIBROMYALGIA
By Dr. John Whiteside

The following information is the approach I take with my patients. I have selected the main factors I believe require attention. A full detailed account of all the factors can be found in the book by Celeste Cooper, RN and Jeff Miller, PhD, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain.

A spectrum exists running from a simple localized myofascial pain syndrome such as a hamstring injury in a young athlete, to the widespread pain and fatigue of fibromyalgia. The common denominator is the myofascial trigger point. In the first case the number of trigger points are few and the client/patient is healthy with minimal or no perpetuating factors. In the second case there are multiple trigger points and the patient is very sick.

With the athlete, all we have to do is inject the trigger points, and recovery is quick and usually permanent. With the fibromyalgia patient, we need to ask, “Why did this illness develop?” and we need to remove as many perpetuating factors as possible to allow healing.

My approach is to attend to as many perpetuating factors as I can first, then begin a series of trigger point injections. In practice this is difficult, because by the time I get to see these patients, they are usually unfit for work and have limited financial resources. Attention to perpetuating factors requires money, and the course of trigger point injections can be very long.

PERPETUATING FACTORS

DENTAL

This may well be the most important perpetuating factor in our modern society. If you have any amalgam fillings or root canal filled teeth, I urge you to read very carefully all the detail on the web site by Dr Robert Gammal. Robert is the leading alternative dentist in Australia, (now retired). Please spend time following the links and consider purchasing the DVD’s. www.robertgammal.com

This, together with the book by George Meinig, Root Canal Cover-Up, is compulsory reading. George was a Founding Member, and past president, of the Endodontic Society of the USA. After a lifetime of doing and teaching root canal therapy, he reviewed the evidence and renounced all his previous work to teach of the dangers of this practice. The evidence in this book is clear and conclusive: root canal fillings and amalgam fillings are toxic to humans.

Over 50% of the patients that come to me for assessment have root canal filled teeth, and a higher percentage have amalgam amalgam fillings. If this is representative of the general population then, clearly, there are many people walking around without obvious pathology. However in those with pathology this is the first perpetuating factor I would correct.

I watched a DVD about the Paracelsus clinic in Switzerland. This is one of the world’s finest holistic clinics. At the end of the presentation, the doctor in charge of the clinic summarized the information. He said, “the people who come to our clinic get better because of all the different things we do, but if I was able to do one thing only for each patient I would remove all their root canal filled teeth and all their amalgam fillings.”

I appreciate that this is a very difficult decision for patients to make. I explain that I can give no guarantee that their clinical condition will improve if they remove their root canal filled teeth and amalgams. I ask only that they read the evidence and then as informed consumers make up their own minds. Since I became aware of holistic dentistry 5 years ago I have seen many patients who became ill following root canal therapy and many who became well after their removal. I am a convert. I had a single root canal filling done when I was 23 years of age. I suffered chronic sinusitis from around that time until I had that tooth extracted 5 years ago. Since then I have had no episodes of sinusitis at all. My energy levels have been amazing and I have felt for the first time in my life really well.

My daughter fractured a front tooth at age 12 years and had a root canal filling. In recent years she suffered from bleeding gums. She was studying in Tasmania. She flew to Perth mid 2010 and I arranged for her to have the root canal tooth extracted and the gap bridged. The bleeding gums ceased immediately. She telephoned me 2 weeks later and told me her studies were so much easier as the constant low grade flu feeling she suffered from all her life was gone.

I have no doubt that root canal fillings and amalgams are major causes of illness in our society.

[Celeste’s side note]. I dealt with a metallic taste and loss of the ability to smell for several months. During that period, I was evaluated by two different ear nose and throat specialists to no avail. I was put on a mouth wash to help with dry mouth, and evaluated by a dentist. Eventually this problem subsided, and at the time I believed the symptom improved because I switched from generic levothyroxin. As I look back, that period was the beginning of a series of crowns to replace large amalgam fillings because of severe bruxism. After reading what Dr. Whiteside has to say, it is my opinion; one should give serious consideration to replacing amalgam. I understand the expense; many insurance policies in the US will only cover amalgam because they are CHEAP! At least consider replacing them by attrition. This week I found a dentist that does not have amalgam in his office.

*Amalgam is a low cost mixture of mercury and metal used to restore teeth.

MALE AND FEMALE BIO-IDENTICAL HORMONE REPLACEMENT THERAPY (BHRT)
It is an indictment of our medical profession that these were never used as the treatment of choice in the first place. As we learned of the properties of the different hormones (progesterone, estrogen, DHEA, testosterone, etc.) , we had the ability to provide safe oral contraception to women and to provide safe treatment of heavy painful periods, premenstrual syndrome, post natal depression, and support the ageing process to minimize the onset of degenerative disease and cancer. But these substances were generic. They could not be patented. The Pharmaceutical Industry followed the dollar and proceeded to make and patent artificial hormones that were as close as possible to the real thing. But they were not the real thing, and they have been responsible, and continue to be responsible, for much of the illness we see in our modern society.

The best introduction is found in the Life Extension articles. Go to www.lef.org and enter bioidentical hormones into the search engine. For further research go to www.naturalnews.com and enter bioidentical HRT. Natural News is the best medical detective web site on the net. It is well researched and is not biased by product sales.

Fibromyalgia, women and BHRT

Fibromyalgia is more common in women. From puberty onward progesterone deficiency is common in women. In young women anovulatory cycles (absence of ovulation), produce no progesterone and in the cycles where an egg is released, often the progesterone production is less than optimal. Anovulatory cycles and luteal insufficiency are common due to the many stressors of modern life: poor diet, emotional stress causing excess cortisol, intensive exercise (elite female athletes frequently have no menstrual periods, with continual anovulatory status), and pollution. The use of the oral contraceptive pill containing false progesterone (progestagen) suppresses normal progesterone biochemistry.

Anovulatory, absence of ovulation
Luteal Insufficiency, less than optimal progesterone

Progesterone is the single most nourishing hormone for the female body. It is an antidepressant. It is a calmative, smoothing out mood swings. It is a diuretic assisting maintenance of ideal weight. It promotes deep delta wave sleep allowing better tissue repair overnight. It normalizes the blood clotting system to protect against deep vein thrombosis, heart attacks and strokes. It protects against breast cancer and osteoporosis. The “high” that most women feel in the last 2/3 of their pregnancies is due to the massive amount of progesterone produced from the placenta. It is a feel good hormone. When the placenta is delivered at childbirth this rich source of progesterone is removed and if the ovaries are low progesterone producers then post natal depression immediately follows. The treatment of post natal depression with bio-identical progesterone is quick and effective. These women are suffering from a low progesterone level, not an antidepressant deficiency.

There is no down side to the prescription of progesterone. There are no serious side effects. Because it can be given safely to all women, it is part of my regime for all women with fibromyalgia.

Estrogen is only needed for perimenopausal and post menopausal women. Before that time women suffer from estrogen dominance, mainly due to the pollution of our environment with false estrogens (xenoestrogens). This pollution is global, xenoestrogens are even found in the polar bears in the Arctic Circle. Perimenopausal and post menopausal women with fibromyalgia need a little estrogen in their cocktail.

DHEA and testosterone are repair hormones (androgens). In women they are very frequently suppressed by the progestagens in the oral contraceptive pill (OCP). It is really silly that the Pharmaceutical Industry made an artificial toxic substance that gave women the freedom to have sex without the fear of an unwanted pregnancy, while at the same time, suppressing the very hormones that make them want to have sex in the first place. How wonderful would it have been if they had made a bio-identical HRT oral contraceptive with progesterone and made women safe from blood clots and breast cancer and retained the repair properties of the androgens?

In women the androgens are produced in the adrenal glands and this function deteriorates with age. The production is also decreased by stress. Thus in a woman with fibromyalgia it is common to see low androgen production, and this problem becomes worse with age. After blood testing to confirm the fact, it is normally essential to include androgens in the cocktail for women with fibromyalgia.

Fibromyalgia, men and BHRT

In men, the main hormones that need attention are DHEA and testosterone. The most important is testosterone produced by the testes. Decreased production is documented as occurring from the 50’s onward, but I am seeing this in much younger men. This more widespread age group of presentation is again manly due to false estrogens (xenoestrogens) in the environment. A man with fibromyalgia must have his testosterone levels checked and if the levels are in the low normal range (not necessarily below the lower limit of normal), then a trial of testosterone therapy should be given. Correctly prescribed, the only contraindication to testosterone therapy is an established prostate cancer. Until the appearance of a prostate cancer, keeping the testosterone levels high protects against the development of prostate cancer. There are no other problems with testosterone in men. It is as good for men as progesterone is for women. Any man presenting to me with pain and fatigue, unless his blood levels are very high, will be given a trial of testosterone replacement.

Hormones for men and women to consider

Pregnenolone

Another hormone worth considering in both men and women is pregnenolone. This was widely used with great success for arthritic pain in the 1940’s, but fell out of favor when synthetic cortisone was developed and patented by the Pharmaceutical Industry. Pregnenolone was safe and effective and synthetic cortisone was dangerous, but pregnenolone was generic and again it was more important to make money than to heal people.

Thyroid hormone

The final hormone that needs attention in both men and women is thyroid hormone. Nutritional medical doctors look at where the thyroid levels are in relationship to the normal range. If the level of TSH (thyroid stimulating hormone) is in the upper half of the normal range (indicating low tissue thyroid levels, it is reciprocal), and the patient has symptoms of low thyroid function, then it is worth a trial of thyroid replacement. The main symptoms of low thyroid levels are fatigue, foggy brain, constipation, increasing weight, dry skin, and pain. Yes pain. Any patient with fibromyalgia must be seriously considered for a trial of thyroid replacement.

[Celeste’s side note]: “How does Hypothyroidism, Hypometabolism, Hashimoto’s and Thyroid Resistance Relate to Fibromyalgia of Chronic Fatigue Immunodysfunction?”

http://fmcfstriggerpoints.blogspot.com/2011/02/what-are-hypothyroidism-hypometabolism.html

Optimal thyroid replacement requires the prescription of both T4 and T3. Traditional medicine normally only prescribes T4. This must be converted to T3 to be active. T4 is a storage hormone and exerts no effect on its own. In patients with fibromyalgia this conversion may be sub-optimal and they will fail to benefit from T4 alone. T3 is best given as a slow release capsule dispensed from a compounding pharmacy.

With all the other hormones described above there are no serious problems with regard to side effects. With thyroid replacement it is important to know that too much thyroid hormone can cause palpitations. This problem can be minimized by taking high dose magnesium, together with a good quality multivitamin. It is also important to be careful about using other stimulants such as coffee. This should only be prescribed by a physician skilled in bio-identical HRT.

DIET
If you have fibromyalgia then your diet needs to be as non toxic as possible. The symptoms of fibromyalgia are emanating from widespread myofascial trigger points. To decrease the sensitivity of these trigger points we need to provide a clean, low allergy, high nutrient diet. Your diet should be organic as much as possible.

Dairy

I recommend removing all normal dairy produce from the diet. Normal dairy is genetically A1, a type of protein found in milk. The A1 cows produce milk containing the A1 beta-casein. After digestion this liberates a fragment called beta-casomorphine-7 (BCM7), a powerful opioid (narcotic). It is an oxidant, the opposite of antioxidant, and therefore acts as a free radical to damage tissues. From research beginning in 1993 it is now implicated in many illnesses, including heart disease, Type 1 diabetes, autism, and a range of auto-immune diseases.

The new A2, also a type of protein found in milk, is non allergenic. This milk has been available in Australia and New Zealand since 2003, and can now be found at select locations in the US. Goats and sheep milk and yoghurt and cheese are all A2 and can be consumed safely.

In New Zealand, the dairy farmers are secretly converting their herds to the A2 genotype. This takes about 10 years to complete. In 20 years time we may look back and see that this staple food we have been encouraging our children to eat has been one of the main causes of illness in our society.
If you have fibromyalgia you do not want A1 milk in your diet.

For further detail, I thoroughly recommend the book, Devil in the Milk by Thomas Cowan, MD.

[Celeste’s side note] Well folks, I Google searched this and it appears Hy-Vee Grocery in the Midwest is the only store that sells A2 milk. I suggest you do an on-line search on A2 milk and the benefits to those with allergies and gut problems, and see if you can find a distributor near you.

Gluten

The next most important food intolerance to consider is gluten. Gluten is the protein in grains, bread, cereal, and pasta. Gluten intolerance is common and it is the great mimicker of the 21st Century. It can mimic any illness. Any patient with fibromyalgia must be considered gluten intolerant until confidently excluded by a trial and challenge.

Traditional medicine describes celiac disease as true gluten intolerance and looks with suspicion on all those other alternative thinkers who talk about their gluten sensitivity. Traditional medicine uses a blood test for antibodies to gluten and endoscopy to take a sample of bowel lining to confirm or deny the existence of celiac disease. In my experience very few people have true celiac disease but many are intolerant to gluten.

[Celeste’s side note] The following is so commonsensical, if you don’t do anything else, DO THIS! This approach will give YOU control in your treatment. I am asked all the time, is there something I can do in my diet? Well, here you go.

The best way to test this is to eat a diet totally free of gluten for 3 weeks then challenge over 2 days by eating as much gluten as you can. If you are gluten intolerant you will have a very large reaction when you challenge.

If your challenge is negative, meaning it produces no aggravation of your symptoms, theoretically, you can bring gluten back into your diet. However, gluten foods are all foods that convert quickly to glucose and are therefore not good foods in the first place, so you will be healthier without them.

Sugar

The third most important item is sugar. Sugar is a poison. It contributes to leaky bowel syndrome and thus allows large allergenic molecules to pass through and set up auto-immune illness. Fibromyalgia is an autoimmune illness.

[Celeste’s side note] A great alternative to sugar and artificial sweeteners is honey. If you can get your hands on locally produced honey, all the better. Local pollen is carried by bees during pollination and may help desensitize you to allergens, boost your immune system, and decrease your need for antihistamines. The pitfalls and comorbid conditions regarding a high glycemic index diet are discussed in the book.

*caution: Because allergens are in amounts sufficient to desensitize the adult, honey can be toxic to an infant with allergies.

Increasingly it is documented that if you can keep your insulin levels consistently low then you will enjoy the optimal level of health. Thus you need to avoid all foods that quickly convert to glucose, and this includes the gluten foods.

The diet I recommend, and the diet I eat myself, is as follows.

Breakfast

For breakfast a protein shake is best. I recommend a specific product “The Sun Warrior” brand protein (contact www.sunwarrior.com to find your local distributor in the USA). This is made from bio-fermented raw sprouted whole grain brown rice, and sweetened with Stevia ®. There are no artificial chemicals and no sugar. Please note I have no financial connection to this company apart from retailing their product through my clinic.

Make up a shake in a blender with the powder alone or add a banana and/or frozen blueberries if desired. As a general rule one scoop per day is sufficient for a sedentary person. This can be increased to 2 or 3 scoops as your exercise levels increase.

An alternative to this would be a cooked breakfast, such as, an omelet.

The rest of the day

Eat normal food; red meat, chicken, sea food, vegetables, salad, nuts, seeds, fruit. If you get hungry, have another protein shake. This is a low allergy, low sugar diet. It is what I eat and I have plenty of energy. I am 66 years of age, work out at the gym 3 times per week, do my clinical work Monday to Friday, and spend time at the computer on the weekends. It works for me!

If you have fibromyalgia it important you consider this type of healthy eating.

NUTRITIONAL SUPPLEMENTS

Even if you are eating a totally organic diet including your meat, chicken, and fish, you are still exposed to all the pollutants in the environment. You will benefit from good quality nutritional supplements.

There are 2 groups of supplements. There are those that are necessary to build the foundations of your health. These are high dose B vitamins, magnesium, zinc, selenium, C, E, D, other trace minerals, and omega 3 fatty acids. Then there is everything else. I call this group the “add ons”. This includes all the many things marketed as the best thing for your health; spirulina, Gogi berries, acai berries, etc. these are all beneficial but are of little use unless you have first laid down the foundation.

Over the nearly 20 years of practicing nutritional medicine I have tested many different combinations. I have settled on the Usana brand as the world’s best. I state here that I am not distributor of this product. I do retail the product through my clinic and if you wish to have this distributed to your home you can contact my wholesaler Vitaly and Jenny Orban at jenovita@bigpond.com

If you begin with the Usana Essentials supplement you will have all the items needed to build the foundation for your program. If you add the Usana Biomega, then you will have good quality clean omega 3 fatty acids. For fibromyalgia patients, I would also recommend Cal Plus. This is a high dose calcium and magnesium tablet. If you take T3 and T4, I would definitely add Cal Plus.

If you do not want to purchase the Usana brand, try to get the highest dose multi containing the items noted above.

[Celeste’s side note] Because you should take thyroid medication on an empty stomach, and some vitamins and supplements, particularly calcium and magnesium, can interfere with absorption, either wait four hours or switch to taking your thyroid medication at night.

PHYSICAL THERAPY

When all the above items are attended to, then you are ready for physical therapy. The best therapy is the local anesthetic injections by a skilled doctor. The next best is the use of acupuncture needles to release trigger points. This is usually called dry needling or intramuscular stimulation. If you cannot find therapists with the above techniques then the next best therapy is good old fashioned deep tissue massage. This needs to begin gently and gradually increase in intensity as you heal. This will take a very long time. But if you correct the perpetuating factors I have noted above, then weekly massage over many months should see gradual recovery.

[Celeste’s side note] Here in the US other modalities may be available to you, which include myofascial trigger point therapy, myofascial release, and active release therapy (ART). Specialists you might want to consider for treatment are physical therapists, physiatrists, sports medicine physicians, chiropractor’s, and pain management physicians trained to treat myofascial trigger points. I have not been able to convince pain management doctors in my care to leave out the steroids, which have not been shown to be of any greater benefit in the FM patient, limits the number of trigger points (TrPs) that can be treated and can cause trigger points to calcify. That is why I see a sports medicine physician that understands fibromyalgia and myofascial trigger points. However, even she will not treat more than 5-7 TrPs at a time and will not inject those in the neck, which are a primary source of dysfunction.

SUMMARY

1. Begin Bio-identical HRT. Look in the telephone book for Compounding Pharmacists in your area. They will give you a list of the doctors that send them prescriptions. These should know how to prescribe your bio-identical hormones. I prefer the use of a troche rather than the creams. A good starting point is for a woman is a troche with progesterone 200 mg, taken a ¼ twice daily. For perimenopausal and menopausal women I would add Biest 1mg, and if the blood tests showed low normal range testosterone and DHEA, I would add DHEA 25 mg and testosterone 4 mg. This is a perfectly safe mixture and you can take this all your life. (disclaimer: in this litigation conscious age I state that taking BHRT will not totally eliminate the chance of developing breast cancer, or having a heart attack or stroke, but there is good evidence to suggest it will reduce your chances of these conditions. You must read the evidence and make your own decision)

For thyroid replacement a safe beginning would be T4, 50 mcg per day and T3 in a slow release capsule 10 mcg per day. You will need to find a doctor to monitor this.

2. Eliminate dairy, gluten, and sugar from your diet.

3. Remove all root canal fillings and amalgams. Follow the links on the site www.robertgammal.com to find an alternative dentist near you.

4. Ideally begin Usana Essentials and Biomega.

5. Begin physical therapy.

[Celeste’s side note] In the United States, we are split between seeing a rheumatologist that only looks at the centralization of fibromyalgia, and someone to treat myofascial trigger points. This is grueling, disconnected, and lacks continuity of care. Australia is lucky to have Dr. Whiteside, who is taking into account all aspects of fibromyalgia, the centralization, effects on the immune system, treatment for myofascial trigger points AND therapies that address each person individually.

Learn more about Dr. Whiteside at http://www.myomed.com.au/ and be sure to click on the download button and watch the video in the supplements link.

Letter to Obama Regarding ME/CFS

http://www.whitehouse.gov/contact

Dear Mr. President,

I am a fibromyalgia (FM) patient also diagnosed with chronic fatigue syndrome (ME/CFS) following a prolonged period of extreme fatigue. Eventually, I was diagnosed with Hashimoto’s Thyroiditis, an autoimmune disorder of the thyroid. Because there is a crossover of symptoms between FM, ME/CFS, and hypothyroidism, we need definitive testing. This will not occur without research.

My story does not stop here. My sister (by marriage), and best friend, was also diagnosed with FM, and a cavalier diagnosis of ME/CFS. She was treated with anti-epileptics, antidepressants, benzodiazepines and pain medications (which significantly altered her once bouncy and kind personality), but never an antiviral regime.

As a nurse and author on FM, ME/CFS and myofascial pain, I always suspected, and told her, she needed further evaluation for the biological factors involved in ME/CFS. She did have an unexplained elevated ANA, was mostly bedridden, and her immune system was broken. However, finding a doctor equipped to diagnose ME/CFS appropriately is a difficult.

She would fall asleep at the table. Those around her believed her symptoms were because of medications and I do believe they were a contributing factor. As most of us, she endured numerous drug trials with psychiatric drugs, which provided an eight year mask. Even before she was disabled, she would come home from work for lunch and fall asleep. I told people around me repeatedly, I suspected her primary problem was ME/CFS. However, those who do not understand this disease only compounded her difficulty with coping and provided little, if no, support.

I remember with grief that fateful day my once best friend was transported to the ER. She had severe pneumonia. This was not her first bout of pneumonia either, despite having had pneumonia vaccines and boosters. She was put in a drug induced coma and placed on a ventilator. This scenario continued for months. Eventually, her lungs became strong enough to wake her up, except she never really woke up. You see, her brain was in constant seizure. She was re-hospitalized and placed in a coma several times before her brain gave up. For a year she suffered in a near vegetative state with periodic glimpses of recognition. Her fight was over in September 2010.

Chronic fatigue syndrome takes lives. My best friend was only 55 years old.

Please help us. Support research into the cause, biological markers, and helpful treatments.

Sincerely, Celeste Cooper, RN

Fibromyalgia (FM) and Myofascial Pain Syndromes (MPS) by Dr. John Whiteside

Intro, by Celeste

I became interested in Dr. John Whiteside’s work when on my quest to find out what was happening to my musculoskeletal system. In an effort to learn all I could on how to make myself better, which as you all know eventually ended up in the book, I Goggled trigger point and Travell and Simons and I read nearly everything I could get my hands on. One of those things was what Dr. Whiteside had to say about treating myofascial trigger points (MTrPs) in his practice in Australia.

I knew there was more to my pain than the tender point model of fibromyalgia. I was concerned as to why I had these “knots” in my muscles that were referring pain, and numbness and wondered if all patients diagnosed with fibromyalgia were experiencing this same painful phenomenon.


I consider Dr. John Whiteside a friend, an advocate, and a true healer. He has been kind enough to offer up the following information for me to share with you.

Fibromyalgia (FM) and Myofascial Pain Syndromes (MPS).

By Dr John Whiteside, MBBS, BSc, FACNEM.

I became aware of the work of Dr Travell when I was working in general practice medicine in 1987. I began to treat patients using trigger point injections and soon confirmed her teachings that myofascial pain syndromes were common. Dr Travell told me in 1988 that in her experience myofascial pain was more common than the common cold. She said that Family Medicine doctors, each day, saw more MPS than any other condition, but it remained undiagnosed.

In the latter half of 1987 I learned that many medical illnesses were partly caused by myofascial trigger points. Trigger points in the sternocleidomastoid muscle frequently produce dizziness, trigger points in the chest wall can produce exercise induced asthma, trigger points in the erector spinae are a common cause of heavy, painful periods. It was clear that the work of Dr Travell revealed a totally new paradigm for general medicine. I began to refer to this work as Myofascial Medicine.

It was this recognition that myofascial trigger points were ubiquitous, and that they contributed so much to many named medical illnesses, that forced me out of Family Medicine. I found it impossible to continue writing prescriptions for pharmaceutical drugs to treat the symptoms of illness, when there was a way available to treat the cause. I opened my specialty practice in Myofascial Medicine in 1988.

To further understand the importance of perpetuating factors I completed my training at the Australasian College of Nutritional and Environmental Medicine (ACNEM), obtaining a Fellowship in 1996 (FACNEM).

Over the past 23 years I have worked full time doing trigger point injections as taught by Dr Travell. I have treated over 20,000 patients with local and regional MPS and FM. I present to you the following information generated from my hands on practical experience.

Fibromyalgia

Fibromyalgia is just a word, a collective noun, coined to group together the symptoms of patients with chronic widespread pain. Myofascial Pain Syndrome refers to an actual physical entity.

Some 20 years ago the leading rheumatologists in the world met to tidy up the nomenclature related to chronic pain. “How can we share our research if we are all speaking about different things? Let us all agree on one definition. “So they discussed this and came to an agreement that the new term would be Fibromyalgia, and that it would be defined as “widespread pain lasting more than three months and when examined by a health practitioner the patient would exhibit local tenderness at eleven of eighteen specific sites.” The specific sites were chosen in an arbitrary fashion to be inclusive of the four body quadrants.

From this point on, when patients presented to doctors with widespread pain and tenderness they would be told that they had fibromyalgia. Many were grateful to at last be given a diagnosis but when they asked what caused it, they were told “we do not know”. When they asked what can be done to cure it they were told, “there is no cure, but you may be helped with certain pharmaceutical medication.”

The more astute patient would ask,” what does fibromyalgia mean?” only to be told that it means you have widespread pain and tenderness. If they had the courage they would tell the doctor that is what they told him in the first place, and all the doctor had done was give it a medical name. But most were happy to have a name that they could give to friends and family, join a local fibromyalgia self help group, and take their drugs.

Fibromyalgia is only a name. It is only a word. Like the word intuition, some people have it, some do not. We know what it is, but do not know where it comes from.

Myofascial pain

Myofascial pain is totally different. It is based on real palpable entities; trigger points existing along taut bands within skeletal muscles.

In the early 1940’s Dr Travell developed chronic right arm pain as a result of handwriting research papers. She suffered with this for many months because all treatment options available to her failed. She returned to the scientific literature, and found, across the previous 100 years, a very small number of scattered reports describing trigger points in muscles. These trigger points were palpable entities, with observable physical properties. They actually existed. They could be felt beneath the examining fingers. They exhibited specific observable behavior; they exhibited a twitch response when plucked, they referred pain to another anatomical region when pressed, and when injected with local anesthetic they briskly twitched then became inactive.

Dr Travell examined her own muscles and found trigger points in her right arm and shoulder. Her father was a physician. She asked him to inject these physical entities with procaine, and after a sufficient course of therapy she obtained a complete recovery. Her career path changed and she spent the second half of her life documenting the properties of these real palpable physical entities.

Side note from Celeste:

MPS=myofascial pain syndrome
CMP=chronic myofascial pain
MPS=CMP

Devin Starlanyl, my mentor, saw MPS being used interchangeably with conditions of the mouth and jaw, which no doubt are related to myofascial trigger points, however, it was leading to confusion. Myofascial trigger points (MTrPs) can exist anywhere there is muscle tissue from the smallest to the largest, from the deepest to the most superficial to the end where muscle attaches to bone. To avoid confusion, she, and I following in her footsteps refer to the disease at the neuromotor endplate (excessive release of acetylcholine, a chemical that relays information to the brain) as chronic myofascial pain, CMP. Most still refer to the disease as MPS.

The acceptance of FM and MPS

Why is FM accepted so easily in the medical community and MPS considered so “alternative”? The answer is that FM is easy and is treated with drugs, while MPS is difficult and requires hard earned practical skills to treat.

Any doctor can learn all that is needed to treat FM in one hour. The patient tells you that they have widespread pain and tenderness, normally together with disturbed sleep, fatigue, and depression. A quick physical examination allows you to elicit tenderness at eleven or more of eighteen specific anatomical sites. You confidently give the patient a diagnosis of FM, together with a prescription for a drug, and a referral to the local FM network group. Consultation completed, next patient please. This is easy to do in the busy day of Family Medicine.

To further support this process the Medical Benefit Organizations have an item number for FM, so you get paid, the patient gets reimbursed, and the Medical Board supports your action in prescribing the drug. The entire protocol is underwritten by the senior specialists and the research is heavily supported by the pharmaceutical industry.

Existing institutions have inertia, and large institutions are almost stationary

Myofascial Medicine is different. Although it is based on real physical entities, it is strangely hard to see. The most effective way of seeing it is to use local anesthetic trigger point injections. These can only be done by medical practitioners and to see the results the doctor has to do them. Doing them takes practice. It is time consuming. It does not have an item number so the extra time devoted to the procedure cannot be financially reimbursed until the doctor becomes so good at the work that he can bill privately an appropriate fee.

To convince busy doctors already earning good incomes from fast drug based medicine to take time out to learn Myofascial Medicine is like reciting Shakespeare in a storm. It may make the actor feel good, but no one can hear him.

Most of the advance work is being done by a devoted number of non doctor therapists; nurses, physiotherapists, occupational therapists, masseurs etc. These people are well educated in the area of Myofascial Medicine but have less ability to effect major therapeutic change because they are denied access to the most powerful tool, local anesthetic trigger point injections. They are also limited by the same things noted above, no item numbers, and poor financial return.

My professional experience

In the early years I was puzzled by the ubiquitous nature of myofascial trigger points. Why were they there? Why were they in such well localized anatomical locations? Why did they refer their pain, or more correctly, their pattern of influence?

The sternocleidomastoid muscles in particular harbored a deep and important mystery. Here were two muscles attached to take maximum advantage of the vectors associated with the movement of the head on the neck. They were fast muscles with intimate neural connections to balance, sight, hearing, and the health of the mucous membranes in the nose and paranasal sinuses (smell). When they developed trigger points they produced dysfunction in these senses. Those of us trained in myofascial medicine noted these symptoms and were drawn to examine the muscles to find the trigger points and then to treat them. But what did this mean?

The long muscles of the back, the erector spinae, when they develop trigger points, refer their pattern of influence to the muscles of the pelvis. Treating these causes a reduction in the intensity and the pain of the menstrual period by relaxing the uterine muscle. Women with endometriosis very frequently suffer low back pain. Do the trigger points in the erector spinae contribute to retrograde peristalsis of the Fallopian tubes and allow for movement of endometrial tissue to the peritoneal cavity and thus cause this common medical condition? Do they also, separately, by the same mechanism impede the normal passage of the egg from ovary to uterus, and contribute to the problem of infertility? What does this mean?

The puzzle was solved, in my mind, when it dawned on me that we were looking at the pathological manifestation of something physiological within the muscle. The ubiquitous nature of the trigger points, together with their reliable pattern of influence (so meticulously documented by Dr Travell), must mean we were looking at an abnormal expression of a fundamental physiological system of truly wondrous importance to our understanding of life.

Medical research, throughout history, has largely started with disease. It is by investigating the illness that we learn about the normal physiology beneath. The manifestations of diabetes have been known for thousands of years. The research into the illness allowed us to understand how the regulation of the pancreas functions in healthy life. The documentation of the effects of a blood clot or bleed in the brain can be found in the very earliest medical text books. The investigation of this pathology contributed to our understanding of normal neural pathways. So, I believe, must be the case with Myofascial Medicine.

Time after time, case after case, I released myofascial trigger points using the techniques taught by Dr Travell, and observed the pattern of influence of that specific focal point within that muscle disappear. The skeletal muscles contained a patterned system of communication. They talked to each other. They were intimately connected to all the elements in the body that allowed for normal function.

The answer to the puzzle was what happened when the myofascial trigger point was not pathologically “active.”

When the sternocleidomastoid muscles were healthy the balance and coordination of the special senses in the head and neck was optimal. The primitive animal or man could see and hear more clearly, had better balance and coordination, could hunt better, fight better, and survive better.

When the erector spinae muscles were healthy in the primitive female the individual had a more reliable menstrual cycle, lost less blood, and was more fertile.

I reflected on the evolution of biological systems and noted the appearance of the skeletal muscle proteins at the very origin of single cell life, the prokaryotes, appearing some 3,500 million years ago. Within these cells exists a cytoskeletonof microtubules together with a network of filaments that connect them. These are made up of complex polymers of many different proteins, including actin and myosin, the two proteins that dominate the skeletal muscle system in man. And what do these primitive structures do? The interior of the cell is in continuous motion, and the cytoskeleton provides the machinery for intracellular movement.

At the very beginning of life, the ancestor of our skeletal muscle system appeared as an intrinsic component of the movement of life. They appeared together. At that point, and onward, the skeletal muscle system was intimately and continuously aware of all other processes occurring in that living organism.

For 2,000 million years this was the only form of life. Then came the eukaryotes, still single cell organisms, but now they had a nucleus. These appeared some 1,400 million years ago and remained the most complex form of life on earth for the next 600 million years before the first and simplest multi cellular organisms developed, about 800 million years ago. At this point the nervous system begins to develop and by 600 million years ago the chordates appear with the primitive notochord.

If we reflect on this we see that the origins of the skeletal muscle system are in existence and functioning intimately with all the other systems of the living organism some 3,500 million years ago. It is only some 600 million years ago that multicellular organisms appeared and made it necessary for evolution to develop a nervous system. In other words the nervous system only appeared in the last 15% of the evolutionary process. It only appeared when the muscular system alone could not process all the information required by the gradually larger and more complex multicellular organisms. If you like, the skeletal muscle system called upon evolution to create a nervous system to help it do its work.

It is for these reasons; I believe with Myofascial Medicine, we are looking at a fundamental body of knowledge so deep and profound that when we fully understand it, and it is incorporated into daily mainstream use by medical practitioners, it will change the whole paradigm of medicine. I believe, in time, the work of Travell will be seen in the same light as that of other great pioneers, such as Darwin. I believe she will be seen as the greatest medical pioneer of the 20th century.

Chronic Pain Thoughts, Tidbits, and Insight: Response to an article

THIS WAY IN: How to Use Pain Meds Safely
Neurology Now
February/March 2011; Volume 7(1); p 10–11,15
VALEO, TOM

http://www.aan.com/elibrary/neurologynow/?event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201107010-00005

Click on Download article, PDF or view each hyperlink

This is a good article on the benefits and pitfalls of opioids. I believe, opioids should be considered for treatment of pain with medications, especially when other treatment modalities have failed. I have to disagree that doses must be elevated due to tolerance, because some research shows that is not true for all people. Antidepressants and anti-seizure medications are also abused and people die from them, but we don’t hear about these cases because BIG pharma somehow keeps these incidents undercover. The FDA doesn’t go after the data on incidents regarding these type of medications. Most of what we hear is what can be sensationalized by reporters. Reporters want headlines that sell. The political money band plays on.

Any medication/drug taken for a reason other than intended is abuse. Improving function is the goal, obtaining enough pain relief to participate in myofasical therapy, get out of a chair, bathe, comb your hair, put on makeup, smile at yourself in the mirror, participate in the day, and interact with family and friends without having to painfully force air over the vocal cords in an effort to talk.

The Pain Patient (Pseudo-addiction) (Cooper and Miller, pg.171-172)

*Medications improve their quality of life. They are in control of their medications.
*The pain patient will want to decrease the medication if side effects are present.
*The pain patient is concerned about physical problems.
*The pain patient follows the contract for the use of opioids. (Pain specialists
will most likely have you sign a contract with them stating that you will follow
their prescribing instructions.)
*The pain patient will have medication left over.

The Addict

*The medications cause a decreased quality of life. An addict is out of control with
medication.
*The addict will want to continue medication regardless of side effects.
*The addict is in denial.
*The addict doesn’t follow the contract for the use of opioids.
*The addict doesn’t have medication left over. Addicts lose prescriptions and always
have a story.

The preceding lists are an excerpt from Fibromyalgia Network, April, 2001, based on Dr. Heit’s work at the Georgetown University School of Medicine (2001) and Dr. Heit’s presentation, “Opioid Prescribing: An Update on Clinical, Ethical and Legal Guidelines” from the Journal of Law, Medicine & Ethics, 22(3) 252–56, (Fall) 1994.

The laws currently written are to protect us, however, the shenanigans of drug seekers and physicians who feed their habit to make a dollar, helping them rid their addiction, keeps the patient in debilitating pain, wallowing in misery and emotionally handicapped. And then they have the gall to insinuate we are to blame for our pain state.

On the other hand, more patient education regarding the pitfalls of opioid therapy is needed. With conditions such as ours it takes a multimodal treatment course to feel better. When our pain in not under control it is impossible to tolerate treatments and activity known to help. It is unreasonable for us to expect, even with pain meds, to be pain free. It is not, nor should it be the main goal. What we need from any of our medications is enough relief to participate in activities and treatments. We are entitled to have enough pain control to avoid the snare of a hypersensitive state, which will keep our brain in a constant wind up. Once this wind-up phenomenon takes place, it takes twice the effort to bring the pain response back under our watchful supervision. We know, or should know, what aggravates our pain (Chapter 2 – Communicating Your Healthcare Needs, pgs. 65-132). It should be up to us to decide what enough is and what too much is. The road to a more productive life is paved with pain medications that afford us the opportunity to move, one step at a time. The golden brick is that one with the face of, movement, thought, physical therapies and emotional support engraved with your name.

A course of treatment that has worked for some is a tapered opioid vacation every couple of months for about a week, so the body doesn't get used to craving more and more. They are called mini med vacations and are supplemented with other meds to help and it is supervised and administered by a qualified physician. More studies need to be done on this because my biggest fear is that we don’t know the end place on opioid dosing until it is too late. Why take unnecessary risk? I understand pain only too well, but as most of us who have been on opioid therapy will tell you, it never takes the pain completely away, and still allows you to get up and move about. We must participate and have our own plan. We need to be empowered. And, we need control over what medication helps us. If the government continues to walk hand and hand with pharmaceuticals, one day our rights pain relief, will be completely stripped. As honest chronic pain patients we need to take this responsibility seriously.

I understand that what works for me, may not work for someone else. For me, it is about balance of spiritual, mental, physical and emotional, collaboration with my healthcare provider, and acceptance. I like to think that because of chronic life altering pain, I have learned the importance of appreciating days I might otherwise take for granted.


I think the alternative drugs, the Savellas, Lyrica, Cymbalta come with their own package of unwanted side effects and alter the brain chemistry and interact with many other medications we take for comorbid conditions such as migraine and IBS. The pharmaceutical industry has financial and political power beyond our comprehension. If a patient ONLY needs one medication and these class of drugs work for them, I am all over it. It is about improving function, but it should be our option, not something dictated to us by our government, putting themselves between the patient and the physician for profitability.

Give us the right to choose what is best for us. Let us have the medication that promotes enough pain relief so we can participate in trigger point therapies, Yoga, T’ai Chi, acupuncture, myofascial release, active release therapy, or even a light massage. Shouldn’t that be a right, not a privilege?

We are intelligent people here. Our goal is to feel well enough to wake up to a bright day. We must not ignore the pitfalls of opioid use, but we have proven over and over again that the pain patient is NOT going to abuse their medications. If one man steals in a community does that mean it is a community of thieves? Even if I do start to abuse my opioid, one in ten will, can’t you inform me of this possibility? Will you offer a remedy for me so that I may live one day with manageable pain? We admit we need to be better educated in what can happen with escalating doses and medication interactions. THAT is what the physician should be giving us when we are on opioid or any medication therapy. If they cannot provide that information for us, then they need to make appropriate referrals.

Harmony and Hope, Celeste

Written by Celeste Cooper, RN, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author, Jeff Miller, PhD).

Hope for ME/CFS- Possible Biological Diagnostic Marker

February 24, 2011

Dear Dr. Schutzer

Thank you to you and your team of scientists for this most important research. I am certain you understand the impact this will have on the ME/CFS community, but I want you to know you have my sincerest personal gratitude for all that this research will mean to myself and so many.

As an author, I also want to thank you and the editor, Howard Gendelman at PLos One for allowing open access, so that I may share this across my network.

Sincerely,

Celeste Cooper, author,
"Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection" (co-author, Jeff Miller, PhD)
website: www.TheseThree.com
Blog: http://fmcfstriggerpoints.blogspot.com/
Facebook Page: http://www.facebook.com/#!/pages/Integrative-Therapies-for-Fibromyalgia/345295878606

*This note to the lead author was sent in response to the following “breaking news.”

Research Breaks Chronic Fatigue Sterotypes, reported by Katie Couric on CBS news.
http://www.cbsnews.com/stories/2011/02/23/eveningnews/main20035610.shtml

The Promise of Proteome Analysis of the PLoS ONE paper by the CFIDS Assoc of America. These markers found in CFS patients’ cerebral spinal fluid could show promise as a biological diagnostic. See the full CAA article on the study Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome, Schutzer et. Al, 2011.

http://www.cfids.org/research/proteome-analysis.pdf

Abstract at Plos One, open access

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, Adkins NJ, Camp DG, Holland BK, Bergquist J, Coyle PK, Smith RD, Fallon BA, Natelson BH. (2011) Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

Citation: Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, et al. (2011) Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

Editor: Howard Gendelman, University of Nebraska, United States of America

Received: November 29, 2010; Accepted: January 26, 2011; Published: February 23, 2011
Copyright: © 2011 Schutzer et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: National Institutes of Health, through NIAID (grant AI088765), NIDA (grant DA021071), NINDS (grant NS38636), the National Center for Research Resources (RR018522), the Swedish Research Council (621-2008-3592), Uppsala Berzelii Technology Center for Neurodiagnostics, SciLifeLab-Uppsala, Time for Lyme, Lyme Disease Association, and the Tami Fund for support of portions of the research. Pacific Northwest National Laboratory units are located in the Environmental Molecular Sciences Laboratory, a national scientific user facility, sponsored by the Department of Energy (DOE), operated by Battelle Memorial Institute for the DOE under Contract DE-AC05-76RL0 1830. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

* E-mail: schutzer@umdnj.edu

# These authors contributed equally to this work.