The Untold Story of your Thyroid, FM and CFS/ME

Why is it important to understand how these conditions can relate to those of us with fibromyalgia (FM) and/or chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)? The answer is, research is consistently pointing to an association of hypometabolism, hypothyroidism, Hashimoto's, and thyroid resistance, particularly in fibromyalgia, but also ME/CFS. This research has been ongoing for at least a decade now, and it is important that we pay attention to what the results are showing. The participants in these studies are representative of us and what we go through every day.

Following are some brief overviews and resources for learning more.

HYPOTHYROIDISM ©

The thyroid gland is a butterfly-shaped organ located in the front of the neck, just over the windpipe. It produces iodine-containing hormones, such as thyroxin. Thyroxin regulates the rate at which body cells use energy and produce heat. When these hormones are low, a person is said to have hypothyroidism.

There are several types of hypothyroidism, (discussed here) but the symptoms are generally the same; physical and mental sluggishness, fatigue, dry skin, weight gain, hair loss, cold sensitivity, muscle cramps, constipation, irritability, and in more serious cases, enlargement of the tongue and/or thickening of the skin.
End excerpt (Cooper & Miller, pg 93-94).

According the the National Institute of Health at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001393
The most common cause of hypothyroidism is inflammation of the thyroid gland, which damages the gland's cells. Autoimmune or Hashimoto's thyroiditis (insert, discussed later). Some women develop hypothyroidism after pregnancy (often referred to as "postpartum thyroiditis").

Other common causes of hypothyroidism include:
•Congenital (birth) defects
•Radiation treatments to the neck to treat different cancers, which may also damage the thyroid gland
•Radioactive iodine used to treat an overactive thyroid (hyperthyroidism)
•Surgical removal of part or all of the thyroid gland, done to treat other thyroid problems
•Viral thyroiditis, which may cause hyperthyroidism and is often followed by temporary or permanent hypothyroidism

Certain drugs can cause hypothyroidism, including:
•Amiodarone
•Drugs used for hyperthyroidism (overactive thyroid), such as propylthiouracil (PTU) and methimazole
•Lithium
•Radiation to the brain
•Sheehan syndrome, a condition that may occur in a woman who bleeds severely during pregnancy or childbirth and causes destruction of the pituitary gland

Risk factors include:
•Age over 50 years
•Being female

More recent research, http://www.ncbi.nlm.nih.gov/pubmed/21085966 suggests that Hashimoto's may be a risk factor for fibromyalgia. I am in hopes that the NIH, will be able update their information as the science evolves.

A great book with a holistic approach on hypothyroidism or Hashimoto’s is Living Well With Hypothyroidism: What your Doctor Doesn’t Tell You that you need to Know by Mary Solomon.

You can find information and patient comments on physicians around the country at her website;

website. www.thyroid-info.com

Dr. Jacob Teitelbaum is one of her physician consultants and author of From Fatigued to Fantastic. He has energy systems that include high vitamin B Complex and other treatments. Find out about him and what he has to say at:

http://www.endfatigue.com/

LAB Values have changed
This is probably one of the best kept secrets of all time, yet a factor that can have a great impact on your quality of life if you have undiagnosed thyroid problems.

The old antiquated thyroid assessment scale of 0.5 to 5.0 for the thyroid stimulating hormone -- TSH was changed by specialists in the field in 2003. All labs and physicians should be assessing the thyroid by:

TSH of 0.3 to 3.0

This means in a normal individual (remember in FM and CFS/ME the HPA Axis is out of kilter) a TSH of <0.3 would indicate hyperthyroidism and a TSH of >3.0 would indicate hypothyroidism. At any rate, either requires further investigation, thyroid scans to actually check the function and ultra sounds to see if there could be a tumor that needs to be removed are indicated, but frequently missed with disastrous results for anyone with thyroid disease, but particularly the FM and ME/CFS patient.

The wretchedness of this story is that it STILL is not recognized in most labs, and doctors are either unaware of the changed parameters or chose to ignore them.

Read “The Tragic and Invisible Epidemic of Thyroid Disease” at Vitality 10
http://www.endfatigue.com/health_articles_t-z/Thyroid-tragic_and_invisible_epidemic_of_thryroid_disease.html

HYPOMETABOLISM–Thyroid Resistance ©

Hypometabolism is not the same as hypothyroidism. In this case the thyroid is working appropriately, but the body isn’t utilizing the thyroid hormones. Like reactive hypoglycemia, thyroid hormone levels are normal but they are resisted in the peripheral tissue; this is thyroid resistance. As suggested in chapter 1 of our book, some FM and CFID (ME/CFS) patients have hypometabolism.

The role of thyroid resistance in the fibromyalgia patient is being investigated, and thyroid autoimmunity has been associated with FM severity (Bazzichi, et al. 2007). It may also contribute to the development of myofascial trigger points (Starlanyl and Copeland, 2001).

Thyroid resistance has also been considered as a metabolic factor in chronic fatigue syndrome, as well as fibromyalgia. (Garrison and Breeding, 2003)

End of excerpt (Cooper and Miller, pg 94-95.)

Dr. John C. Lowe is a fibromyalgia, thyroid, and metabolism researcher. As Director of Research for the Fibromyalgia Research Foundation, he has spearheaded the scientific study of two related topics: the metabolic causes of fibromyalgia, and the relief of fibromyalgia symptoms through the treatment approach he developed and named "metabolic rehabilitation." Read more at:

http://www.drlowe.com/jcl/biojcl.htm

IMHO, I am not sure that treating hypometabolism will END fibromyalgia, or CFS/ME. Though having my own Hashimoto's treated with thyroid hormone has helped with the life altering fatigue, it has not helped my pain, insomnia, migraines, and other centrally mediated co-morbid conditions or the peripheral pain generators from myofascial trigger points. However, I do believe hypothyroidism has a more than casual connection to fibromyalgia. And, it is possible that some diagnosed with chronic fatigue syndrome, may not have a viral connection, but a metabolic one if they have undiagnosed thyroid disease. As in my case, one cannot rely solely on a TSH. The proper tests must be done for a proper diagnosis.

Knowing if you have hypothyroidism or hypometabolism, and treating it will certainly help control this co-existing condition. As we talk about in the book, this is extremely important and gives one a sense of empowerment over fibromyalgia and chronic fatigue syndrome.

You can read about Dr. John Lowe’s theory on hypometabolism in an article written by Mary Shomon at:

http://www.thyroid-info.com/articles/drlowefms.htm

HASHIMOTO'S THYROIDITIS—Autoimmune Thyroiditis ©

Hashimoto’s thyroiditis is a condition known to coexist—although not exclusively—in a certain subgroup of CFID patients. It is a type of autoimmune thyroid disease, meaning the body’s immune system attacks and destroys the thyroid gland. Its characteristics are inflammation of the thyroid gland, fatigue, depression, cold sensitivity, weight gain, muscle weakness, thickening of the skin, constipation, dry or brittle hair, muscle cramps, increased menstrual flow, and goiter. Some patients may not have any symptoms.
End excerpt (Cooper and Miller, pg 95).

As we now know, Hashimoto's has been significantly linked to fibromyalgia, http://www.ncbi.nlm.nih.gov/pubmed/21085966 in the latest Bazzichi, et al study (Nov 2010). This is not the first study and should be receiving the recognition it deserves by those who treat fibromyalgia.

Kristin Thorson, is a patient, advocate and editor of Fibromyalgia Network. http://www.facebook.com/#!/FibroNetwork She also runs the nonprofit organization, http;//afsafund.org which funds important FM research and the board has several well known physicians.

As do all of her articles, the January 2011 edition of Network News article, “Thyroid Malfunction Dragging you Down?: Symptoms, Tests and Treatments" caught my eye.

I suggest you take her article and the studies cited her, and a copy of my blog with you to your doctor if you are having unusual symptoms consistent with those mentioned here. Preface your remarks with, you probably already know this, but I found it quite interesting, and thought I would like to share it with you so we can get to the bottom of my symptoms. Get that TSH, free T4, free T3, TPO and TG. Take them actual journal articles and articles supported by research. If they are not interested, find a new doctor.

“As I walk this path, I understand the privilege of intersections, these interruptions enrich my life.” --Celeste


PS
You can find my letter of gratitude to the authors in my blog, Thyroid Autoimmunity and Fibromyalgia, Letter to the author, (Laura Bazzichi, lead author of studies).

http://fmcfstriggerpoints.blogspot.com/2011/01/thyroid-autoimmunity-and-fibromyalgia.html
I hope you will read it. It is important to recognize people for their unending dedication to helping others.

Resources other than those previously linked:

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., by Division of Rheumatology, Department of Internal Medicine, University of Pisa, Pisa, Italy.

L. Bazzichi, A. Rossi, T. Giuliano, F. De Feo, C. Giacomelli, A. Consensi, A. Ciapparelli, G. Consoli, L. Dell’osso, and S. Bombardieri, “Association between thyroid autoimmunity and fibromyalgic disease severity,” Clinical Rheumatology 26, no. 12 (2007): 2115–20.

Cooper C and Miller J. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010.

R. L. Garrison and P. C. Breeding, “A metabolic basis for fibromyalgia and its related disorders: the possible role of resistance to thyroid hormone,” Medical Hypotheses 61, no. 2 (2003): 182–89.

Network News. (2011, January) “Thyroid Malfunction Dragging you Down?: Symptoms, Tests and Treatments.”

Mary Shomon. Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You... That You Need to Know (Collins; 1st edition, March 2000)

Devin. J. Starlanyl and Mary. E. Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual (Oakland, Calif.: New Harbinger Publications, Inc., 2001), 44.

Bespeak or Begrudge: finding and affording the shingles vaccine

People with fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)often have impaired or ineffective immune systems. This, along with some medications and treatments, a history of certain types of cancer, and stress and fatigue puts us at a higher risk of developing shingles.

Shingles also known as herpes zoster is a viral infection from varicella-zoster virus that causes painful rash/blisters on the skin following a nerve tract. If you have had chicken pox the virus can lay dormant until it erupts later in life as shingles. Early treatment with an anti-viral drug may decrease the risk of reoccurrence.

See the latest reports and information.

Shingles Vaccine from US Today: Your Life Health.
“Shingles vaccine can protect you but it can be hard to find.”
http://yourlife.usatoday.com/health/medical/story/2011/05/Shingles-vaccine-can-protect-you-but-it-can-be-hard-to-find/47160242/1

More on the vaccine from the CDC, standout comment, if you have had shingles, the vaccine may help prevent recurrence.
http://www.cdc.gov/vaccines/vpd-vac/shingles/vacc-need-know.htm

Post Herpatic Neuropathy (PHN) = The residual effect of shingles, where nerve pain, neuralgia, last long after a shingles outbreak has cleared up. It can last months or a lifetime.

Treatment currently includes: antidepressants, anticonvulsants (gabapentin like drugs), topical lidocaine or capsaicin cream, opioid analgesics and TENS units.

Having had shingles, the US Today article left me with an unanswered question. “Does the vaccine help long term effects that can occur, post herpatic neuropathy?”

According to the FDA, the vaccine, Zostavax, will not help PHN.
http://www.fda.gov/BiologicsBloodVaccines/Vaccines/QuestionsaboutVaccines/UCM070418

An important question was raised after I posted this blog. “Should known immunocompromised patients receive the vaccine?” This is something I think each individual should discuss with their doctor, following is why.

Vaccinating the already immune compromised, from the National Foundation for Infectious Diseases:

“Immunocompromised people are more likely to have serious illness with complications as a result of chickenpox. The best way to prevent infection in such people is by immunizing their susceptible family members and their other close contacts. However, some immunocompromised people are eligible for vaccination.”
http://www.nfid.org/pdf/factsheets/varicellaadult.pdf

Harmony and Hope, Celeste, author

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

You can find out more about me, the book, how to order the book, and other helpful information and links at http://TheseThree.com

My critique of “Diagnosing fibromyalgia: Moving away from tender points”

When I got up this morning, the last thing on my mind was writing an advocacy piece, let alone a blog, however, following my own philosophy of “seize the moment” I found my mind would not let me set it aside.

In an effort to raise awareness of centralization in FM from the peripheral input of pain by myofascial trigger points, the following letter when out to doctors who have been kind enough to communicate with me on this issue from both sides of the fence. A Bcc went out to other advocates to provide opportunities for them to carry this forward.

First and foremost, a huge THANKS to Marla Silverman at PANDORA for bringing this to my attention and for giving me the privilege of commenting.
http://www.pandoranet.info/

Following is my letter, which is pretty much my comment to Marla’s request with a few clarifications. After this letter is the full abstract for “Diagnosing fibromyalgia: Moving away from tender points.”

RE: Diagnosing fibromyalgia: Moving away from tender points
By ATUL KHASNIS, MD, WILLIAM S. WILKE, MD | April 11, 2010
The Journal of Musculoskeletal Medicine. Vol. 27 No. 4

Hello Dr. Gerwin, Dr. Bennett, Dr. Russell and Dr. Whiteside

Marla Silverman, President of the Patient Alliance for NeuroEndocrineimmune Disorders Organization for Research and Advocacy has asked me to comment on the noted article in the Journal of Musculoskeletal Medicine. I thought you all might be interested in what I had to say:

It is refreshing to see continued acknowledgement of the science by noting this [FM] is a diagnosis of inclusion. No doubt the aspects reviewed in 2010 were a precursor to the New Proposed Diagnostic Criteria for Fibromyalgia. The Proposed criteria do look at inclusion versus exclusion by noting the comorbid conditions with FM and the centralization of pain. My beef and the beef of others is that they are not including the assessment of myofascial trigger points. If we know this is the main complaint in FM, and science shows repeatedly that MTrPs are peripheral pain generators to the centralization of FM, why wouldn't we acknowledge their presence so they can be appropriately treated?

Exercising a muscle with active or latent trigger points (TrPs) will lead to further dysfunction and shortening [of muscle] and development of TrPs in compensating muscles unless the TrPs are treated prior to exercise. It is one of those double edged swords.

Exercise, stretching and aerobic (there is believed to be a cellular hypoxia related to TrPs) conditions muscles and helps prevent TrPs. The problem is, with FM, TrPs are not the same as in the average person who sustains an injury. It appears that the injury occurs at a very basic cellular and metabolic level, hence the release of pro-inflammatory cytokines in the absence of injury and no inflammation measured in FM, and the presence of elevated sensory preceptors in FM as indicated in a recent study [“the FM-only group had significantly higher baseline quantities of mRNA for sensory receptors P2X4 and TRPV1 and for the cytokine IL10.” Based on the group’s earlier work in mice, they hypothesize that these markers represent increased signal for muscle metabolites that would lead to widespread increases in muscle pain and secondary hyperalgesia in skin throughout the body. Light, et al., 2011].


Side Note:
This study was collaboratively funded by the American Fibromyalgia Syndrome Association (Associated periodical “Fibromyalgia Network News”)
http://www.afsafund.org/research.htm
CFIDS Association of America,
http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/#comments
And the National Institutes of Health

To me and to others who have studied this extensively, such as Devin Starlanyl, Dr. Gerwin, Dr. Bennett, Dr. Hong, Dr. Ge Hy, etc. this all seems pretty basic, but continues to be overlooked.

The article will help raise awareness to the centralization of FM and that certain conditions are common in FM because of brain defects or defects in the messaging system, but it is a very minor start in educating about the aspects of FM. It does take a multimodal approach, but part of that is myofascial therapy, which again, has been omitted.

I found it strange that the authors commented that opioids have been shown to be of little benefit, when there are other studies that show the contrary, and they say that the SSRIs and SNRIs are indicated, as well as Lyrica and Neurontin like drugs, when the evidence of their success in treatment of FM has been very underwhelming. Of course, the benefit of medications of any of these classes would depend on other co-existing conditions.

My biggest concern, as you know is that MANY with FM have migraine and treat them with triptans, which are contraindicated with the SNRIs or SSRIs or combo drugs such as Cymbalta. This MUST be considered for patient safety.

Patient education is imperative, I certainly agree with that, but so is physician education. Everybody needs to be on the same page. The patient should feel free to roam the internet to educate themselves and not be put down for doing so. We are in an entirely different age than we were even 10 years ago. Many patients and patient advocates have saved lives by being entirely informed.

This was the most important bullet of the entire article.

•We refer the patient for sleep study, if indicated; physical therapy; or aquatic therapy. Most patients can motivate themselves for pool therapy. Refer the patient for sleep medicine if that is indicated by the results of the sleep questionnaire.

These days if the doctor asks for a myofascial assessment, the physical therapist will be specialized in this and be able to report back to the physician on the presence of myofascial trigger points, about dysfunction, range of motion of the muscles involved, etc. When this starts to happen, doctors will set up and take note. Dr. Robert Bennett once told me that in all of his years in clinical treatment of FM, he never had one patient that didn't have myofascial trigger points, and Dr. John Whiteside has told me the same. Of course they know how to assess for them, this is paramount.

There you have it, my take. Hope that helps, and TY for valuing my opinion.

Harmony and Hope, Celeste

Light AR, Bateman L, Jo D, Hughen RW, VanHaitsma TA, White AL, Light KC. Gene expression alterations at baseline following moderate exercise in patients with chronic fatigue syndrome and fibromyalgia syndrome. Journal of Internal Medicine.2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x.


Diagnosing fibromyalgia: Moving away from tender pointsEvaluation now emphasizes “areas of pain” and seeing the “whole patient”
By ATUL KHASNIS, MD WILLIAM S. WILKE, MD | April 8, 2010
Dr Khasnis is a fellow and Dr Wilke is a staff member in the department of rheumatic and immunologic disease at the Cleveland Clinic in Ohio.

ABSTRACT:
Since the American College of Rheumatology definition of fibromyalgia syndrome (FMS) was set in 1990, multiple studies have lent support to relying less heavily on tender points. Patients may indicate “areas of pain,” and the diagnostic process includes other common symptoms. The Symptom Intensity Scale provides an objective measure of pain and fatigue. Recognition of FMS may be aided by the presence of other conditions. FMS should be a diagnosis of inclusion rather than exclusion. Multimodal management of FMS starts with patient education, and exercise is a keystone of treatment. Sleep optimization is an important issue. Depression deserves investigation, recognition, and optimal management. Pain management in patients with FMS often is challenging. A combination of patient education and nonpharmacological and pharmacological measures is key to management. (J Musculoskel Med. 2010;27:155-162)

Full article can be viewed at Fibrotalk Blog, http://www.fibrotalk.com/forum/viewtopic.php?f=29&t=23905

Points That Need More Than Pondering: Defining Myofascial Trigger Points

What is a Myofascial Trigger Point (MTrP), and why does it matter, especially in fibromyalgia?

Myofascial trigger points can mimic many things and cause pain, dysfunction, and shortening of the muscle affected by this knotted up muscle fiber in a taut band of muscle. Such things as paresthesias (numbness and tingling that can be local or radiate in a specific pattern), burning, and pain can result from a MTrP, which is entrapping a nerve. Circulation/temp changes can occur if a MTrP is located next to a blood vessel, and swelling can develop if the MTrP is located next to a blood or lymph vessel). (Helpful treatments are links following).

The following book excerpts are protected by copyright, you must ask permission from Healing Arts Press to reuse this content.

Common Abbreviations©

MPS: myofascial pain syndrome
CMP: chronic myofascial pain
MTP: myofascial trigger point
TrP: trigger point

Myofascial Trigger Point©
A myofascial trigger point (TrP) is a self-sustaining, irritable area in the muscle that can be felt as a nodule in a taut band. This irritated spot causes the muscle to gradually shorten, interfering with the motion function of the muscle and causing weakness and pain. Trigger points differ from tender points in that generally they refer pain to other parts of the body and can usually be felt with the hand (palpated) unless the muscle is too rigid from intense muscle involvement, or the trigger point is in a deep muscle or under bone. The tender points of FM or myalgias associated with CFID do not restrict motion or cause localized muscle weakness. If they do, the patient should also be evaluated for the presence of CMP. Trigger points in CMP are well defined and often radiating—the pain radiates out to other parts of the body.

Active Trigger Point©
An active TrP is a myofascial trigger point that causes pain at rest. It is always tender, causes shortening of the muscle, weakens the muscle, and causes patient complaints of referred pain on direct compression. An active trigger point can elicit a visible local twitch response when adequately stimulated by compression or needle insertion. It can produce referred motor and autonomic phenomena, generally occurring in the TrP referral zone. An active TrP can also cause the referral zone to become tender.

Secondary Trigger Point©
A secondary TrP is one that develops in a second compensating muscle. A compensating muscle is one that is trying to make up for the malfunction of the muscle affected by primary trigger points. In other words, when a primary trigger point causes muscle dysfunction, the opposing muscles become stressed. These opposing muscles become overloaded because they are attempting to carry the entire load of the muscle work needed to perform a task. When staring at a computer screen your head starts to drift forward after a while, particularly if you spend hours there. You may have primary TrPs in muscles on the front of your neck, which may or may not be making their presence known. As your head starts drifting forward, putting less stress on the primary TrPs because of the slackening, the muscles on the backside of your neck are being stretched and stressed in an effort to keep your face from falling onto your keyboard. The sustained overstretching of these muscles causes secondary trigger points to develop in the muscles on the back of your neck. (This is an important reason to pay attention to posture as an aggravating factor, to be discussed in chapter 4.)

Satellite Trigger Point©
Chronic myofascial pain (CMP) from myofascial trigger points is a peripheral nerve to muscle problem. Acetylcholine (a neurotransmitter, a chemical that carries information from the peripheral nervous system to the central nervous system) has been found in excessive amounts. Fibromyalgia, CFID/ME, migraine, IBS, irritable bladder and several other common co-existing conditions have a strong central nervous system component. When any of these co-exist with chronic myofascial pain (CMP) from myofascial trigger points (TrPs), the peripheral message of painful trigger points to the brain keeps the brain in a hypersensitive state," causing a “wind up” phenomenon at the HPA-axis (dysfunctional in FM and thought to be dysfunction in CFID) is off an running.

End Comments:
Chronic myofascial pain (CMP) from myofascial trigger points is a peripheral nerve to muscle problem. Acetylcholine (a neurotransmitter, a chemical that carries information from the peripheral nervous system to the central nervous system) has been found in excessive amounts where nerve meets muscle. Biopsies show a histological difference in MTrP fiber and even differences between an active and latent MTrP. Because of development of new technology examiners can now easily locate MTrPs for treatment.

Fibromyalgia, CFID/ME, migraine, IBS, irritable bladder and several other common co-existing conditions have a strong central nervous system component. When any of these co-exist with chronic myofascial pain (CMP) from myofascial trigger points (TrPs), the peripheral message of painful trigger points to the brain keeps the brain in a hypersensitive state," causing a “wind up” phenomenon at the HPA-axis (dysfunctional in FM and thought to be dysfunction in CFID) is off an running.

Myofascial trigger points can mimic sciatica, pelvic floor pain, or costochondritis. They can also cause painful intercourse, impotence, vulvodynia, cavitational necrosis, TMJ/TMD, restless leg syndrome, PMS, and much more. They can be one of the main factors in migraine headaches, chronic sinusitis and a host of other conditions. They are NOT to be taken lightly, especially now with abounding and repeated research over more than a decade showing us that they are a main component in the pain of FM.

Myofascial Release http://www.myofascialrelease.com/fascia_massage/public/default.asp

Active Release Therapy (ART) http://www.qfac.com/pain_management/active_release_therapy.html

National Association of Myofascial Trigger Point Therapists http://www.myofascialtherapy.org

Recommended reading for self treatment:
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD. Healing Arts Press: Vermont, 2010. (Forward by Devin Starlanyl, author, researcher, endorsed by Dr. John Whiteside, myofascial and holistic specialist physician, Australia, and Bill Douglas, Best Selling author, teacher, and founder of many stress management programs with global recognition.)

Healing Arts Press (Publisher)
http://store.innertraditions.com/isbn/978-1-59477-323-5 (On Sale)

Amazon
http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238/ref=sr_1_1?ie=UTF8&s=books&qid=1246252159&sr=8-1(available in Kindle)

Barnes and Nobel
http://search.barnesandnoble.com/Integrative-Therapies-for-Fibromyalgia-Chronic-Fatigue-Syndrome-and-Myofascial-Pain/Jeffrey-Miller/e/9781594773235?itm=1&USRI=Integrative%20Therapies%20for%20Fibromyalgia,%20Chronic%20Fatigue%20Syndrome,%20and%20Myofascial%20Pain:%20The%20Mind-Body

The Trigger Point Therapy Workbook, 2nd ed. By Clair Davies, NCTMB with Amber Davies, NCTMB. New Harbinger: Oakland, 2004. (Forward by Dr. David Simons)

http://www.triggerpointbook.com/triggerp.htm

Amazon
http://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1572243759/ref=sr_1_1?ie=UTF8&qid=1307195480&sr=8-1

Barnes and Nobel
http://www.barnesandnoble.com/w/trigger-point-therapy-workbook-2d-clair-davies/1006105335

I hope you found this information helpful.


"Though our bodies are weak our determination is unbreakable, standing tall, standing strong, standing united, committing to a cure."

Celeste http://TheseThree.com
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Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. [May 5 Epub ahead of print].

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Niddam DM. Brain manifestation and modulation of pain from myofascial trigger points. Curr Pain Headache Rep. 2009 Oct;13(5):370-5.

Partanen JV, Ojala TA, Arokoski JP. Myofascial syndrome and pain: A neurophysiological approach. Pathophysiology. 2010 Feb;17(1):19-28. Epub 2009 Jun 4.

Shah JP, Gilliams EA. Uncovering the biochemical milieu of myofascial trigger points using in vivo microdialysis: an application of muscle pain concepts to myofascial pain syndrome. J Bodyw Mov Ther. 2008 Oct;12(4):371-84. Epub 2008 Aug 13.

Sikdar S, Shah JP, Gilliams E, Gebreab T, Gerber LH. Assessment of myofascial trigger points (MTrPs): a new application of ultrasound imaging and vibration sonoelastography. Conf Proc IEEE Eng Med Biol Soc. 2008;2008:5585-8.

Do No Harm – Medication Safety

Frequently we ask each other about medications our doctors want us to try. It is a normal reaction to desire the input from our other challenged friends. As a nurse and patient advocate, I have a few words to say about this.

First, no two of us are exactly alike. Though many of us have the same comorbid conditions, IBS, IC, irritable bladder, chronic sinusitis, Raynaud’s, migraine, symptoms compatible with chronic myofascial pain (CMP), hypothyroidism or Hashimoto’s, insomnia, allergy, malaise, SICCA symptoms (dry mucous membranes usually due to an autoimmune process), anxiety and depression, cold intolerance, leaky gut syndrome, small intestine bacterial overgrowth (SIBO), restless leg syndrome, multiple chemical sensitivities, bruxism (teeth grinding), symptoms of autonomic effects, neutrally mediated hypotension (NMH), postural orthostatic hypotension (POTS), jaw pain, chills and night sweats, and many more that cross over between FM, ME/CFS, and CMP, each requires their own different medication or treatment. And, we may have other co-existing conditions to boot.

comorbid = indicating a medical condition existing simultaneously but independently with another condition in a patient. (source Wikipedia)

“Chronic Myofascial Pain (CMP) = a chronic disease causing sensory, motor, and autonomic symptoms that are affected by nerve to muscle chemicals where the nerve endplate meets muscle. It is a chronic disorder in which myofascial trigger points (TrPs) develop in muscles that are overstressed, overused, or injured, and they can be reactivated by a chill or other stressor. Different from isolated occurrences of TrPs in normal individuals; CMP develops when TrPs are apparent in several quadrants of the body and have become chronic.

Myofascial Trigger Point = A myofascial trigger point (TrP) is a self-sustaining, irritable area in the muscle that can be felt as a nodule in a taut band that causes the muscle to gradually shorten, interfering with the muscle function causing weakness and pain.”

[Cooper and Miller, 2010]

Co-existing conditions, conditions or diseases that occur coincidentally with another, but not at any greater rate with FM or ME/CFS, also require medications for treatment that might interfere with or enhance our other meds. Though they are not considered comorbid conditions the can co-exist. These diseases might include Lupus, Lyme’s, Multiple sclerosis (MS), Gulf War Syndrome, chronic yeast, Complex Regional Pain Syndrome (also called Reflex Sympathetic Dystrophy Syndrome), osteoarthritis, high cholesterol (statin drugs), rheumatoid arthritis, degenerative disc disease, hypothyroidism, thyroid resistance, insulin resistance, hypoglycemia, reactive hypoglycemia or any metabolic condition, and many more which are explained and defined in our book.

I believe you will be extremely interested in the links provided at the end of this article, and I hope you will read to the very end and look at each one. They are some of the tools you need to be as safe with your medications, including over-the-counter (OTC) and herbs and supplements.

All of these conditions can be present in FM and ME/CFS, but vary between patients; meaning medications to treat one condition might interact with medications to treat another. The more medications you need to control comorbid and coexisting conditions, the greater the risk for interaction.

Physicians have little time to spend with you before handing you a script or sample and sending you on your way. The insert to your medication, which you may or may not get with your samples, will say certain medications require close monitoring when given together. As an example, many FM, ME/CFS, or CMP patients have migraine as a comorbid condition, yet the SSRI and SNRI antidepressants used in treatment come with warnings regarding the concomitant use with certain drugs to treat migraine. Serious life threatening results can occur and it is doubtful your doctor will be able to monitor you close enough until they get a report on your emergency room visit or hospitalization. Now, if you don’t have comorbid or coexisting conditions, and your only medication is that to treat FM, ME/CFS, or CMP then you are not at a great risk, however, part of having FM or ME/CFS is the relationship of so many other conditions.

Another example is the use of calcium citrate to combat osteopenia (precursor to osteoporosis). If you have hypothyroidism you should not take calcium within 4-6 hours of your thyroid hormone replacement, and most of the statin drugs used to treat high cholesterol tell you not to eat or drink grapefruit, but let’s face it, when samples are given or you are instructed to take something OTC, you don’t get this information. The pharmacist is also overworked and generally not in the mood to do one on one education on your complete medication profile on demand. Though they will give you information on a new medication, you need a complete review of your medication profile when a new med or supplement is added. Take a complete medication list with you. Laws regarding the responsibility of the pharmacist to protect us from medication interactions are in place. You might ask that they review your file and the data base at their disposal then set up a later consultation time, or follow up phone call. This will give them time to give you the attention you need.

Medications such as Lexapro, an SSRI used to treat primary FM, can exacerbate or cause bruxism.

Medications used to treat arthritis conditions can cause a great deal of GI distress, if you have one of the many gastrointestinal conditions that seem to occur with FM, the drug you are using to treat your co-existing condition can make it worse, or could cause a life threatening bleed.

Other medications used to treat conditions related to ME/CFS: Immune globulin may interfere with vaccinations, interferon, antivirals such as acyclovir, and now Ampligen all come with some significant warnings. This doesn’t mean the benefit doesn’t outweigh the risk, only that you need to be aware of what might happen so you can make your own educated choices.

Medications used to improve cognition and improve sleep, come with a host of interactions with other medications. As an example, a drug being used to help with cognition used to treat Alzheimer’s, galantamine, and the drug Methylphenidate to treat ADHD interfere with many of the other medications used to treat our conditions. The classes of medications used to help us sleep, relax muscles, treat headache, allergies, or the many other conditions we endure come with long lists of interactions too.

These are just a few examples, but all of these things have to be weighed on a benefit/risk analysis. The days of your physician being able to help you with that or even discuss the possibility are long gone unless you speak up. We must become proactive in our own healthcare. Know what you are putting into your body, what it is for, and interactions with other medications or other conditions you may have.

I always tell my husband when starting a new medication, and here is why. I was put on a widely used medication to treat primary FM. Disordered sleep and insomnia are part of my everyday life. However, I went 5 days with no sleep. I was agitated, paranoid, delusional, severely depressed, could not walk, put two thoughts together or form a complete sentence. It was my husband that was able to make the connection with the new medication, because I didn’t have enough active brain cells to connect the dots. What happened is called a paradoxical reaction. That class of medications is now on my allergy list. I have also had to visit the ER because of other new medication reactions. We do experience unusual sensitivities; it is part of FM and ME/CFS.

I was an ER nurse for 20 years, so I understand that when physicians see certain medications listed as allergies, a red flag goes up. Well, I am here to tell you that I really don’t care what they think. What is important to me is that you and I live the best life we can live under the circumstances.

Here is a little story for you. I was once forced to give a patient a drug in the class of non steroidal anti-inflammatory, when she had ibuprofen listed as an allergy. Believing what I always told my students, the patient knows more about their body than anybody, if they question you, you question you, I had epinephrine at the bedside. She immediately went into anaphylactic shock and lost consciousness. Following our standing protocol (I didn’t need the doctor’s permission), I gave it. Believe me these things do happen. Throw a fit if need be.

If you have a concern, check it out on sites that are reputable, document your symptoms, print out supporting material and take it to your doctor. Fibromyalgia, ME/CFS and CMP are complicated, your physicians needs to be working for you and with you. Let him/her explain to you why the benefits may outweigh the risks in your case. If he/she cannot do that ask who can and get a referral. If your physician seems disinterested, find a new doctor.

Always make sure your pharmacist or every pharmacist (I understand these days people must shop for the best price) has a complete list of all your medications, including samples and over the counter medications (acetaminophen, widely known as Tylenol, is in many medications and there is a potential for overdose and severe liver damage). Over the counter medications, supplements, and even creams may contain chemicals that can be absorbed and increase blood levels of your medications. An example given to me was a cream with St. John’s Wort, which can alter/elevate serotonin levels. There is a reaction called serotonin syndrome, which is life threatening crisis. So if you take a medication such as an SSRI or combination SSRI/SNRI, you could be at risk. There is a form for medication lists and tracking benefits/non-benefits of all therapies in our book.

Not all drugs should be abruptly discontinued, particularly those in the class of antidepressant or antiseizure, which are approved for use in the U.S. for FM and are being used in ME/CFS. Please consult with your physician and/or pharmacist before discontinuing any of your medications.

Report any drug reaction to your pharmacist and make sure they submit an incident report. You can also report interactions at FDA Med Watch (left column)
http://www.fda.gov/Safety/MedWatch/default.htm

Please Be Safe, take charge of your health care; it could save your life.

Drug Checkers

Good patient information

http://www.drugs.com

Check interactions of specific drugs

http://www.drugs.com/interactions-check.php?drug_list=1989-1281,704-358

Provides extensive information about side effects, drug interactions, FDA recalls and drug alerts

http://Drugwatch.com

Information on Supplements

http://www.arthritistoday.org/treatments/supplement-guide/index.php

Check drugs you are taking for interactions with each other, including over the counter drugs or herbals and vitamins.

http://cpref.goldstandard.com/inter.asp?r=8084



Information on Drugs and Supplements

http://www.ncbi.nlm.nih.gov/pubmedhealth/s/drugs_and_supplements/a/

Reporting drug interactions or adverse effects
FDA Med Watch (left column)

http://www.fda.gov/Safety/MedWatch/default.htm

FM Drugs

http://fmcfsme.com/drug_database.php

http://arthritis.about.com/od/fibromyalgia/a/fibrotreatment_2.htm

http://arthritis.about.com/od/fibromyalgia/a/fibrotreatment_2.htm

http://www.ncbi.nlm.nih.gov/pubmed/20047155 (Article on why Europe will NOT approve the medications that the FDA has approved in the US for treating fibromyalgia)

http://www.benthamscience.com/open/torj/articles/V004/35TORJ.pdf (PDF Pregabalin in Treatment-Refractory Fibromyalgia. My Comment: the efficacy of Pregabalin in treating FM is suspect.)

http://rheumatology.oxfordjournals.org/content/50/3/532.abstract (Comparative efficacy and acceptability of amitriptyline, duloxetine and milnacipran in fibromyalgia syndrome: a systematic review with meta-analysis. My Comment: the efficacy of amitriptyline, duloxetime and milnacipran for treating primary FM are not as promising as we hoped.)

http://www.health.com/health/condition-article/0,,20326413,00.html (Prescription Medications for Fibromyalgia: Lyrica, Cymbalta, Savella, and Off-Label Remedies. My Comment: Success rate for Lyrica, Cymbalta and Savella is disappointing, however, if you happen to be in the small percentage of people that it helps, Woo Hoo! If the results are not worth the risk, then reevaluation is indicated)

CFID drugs

http://www.immunesupport.com/chronic-fatigue-syndrome-medications.htm

http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=treatments-and-drugs (Comment: Unfortunately, there is no magic bullet for CFID (ME/CFS) at this time and treatments are aimed at the underlying conditions.)


Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain by Celeste Cooper, RN and Jeff Miller, PhD. Healing Arts Press: Vermont, 2010.

Thursday May 26th Teleconference on Myofascial Trigger Points

In honor of Fibromyalgia Awareness Month, I have been invited to speak on myofascial pain in fibromyalgia. The agenda will include myofascial trigger points, their involvement in fibromyalgia, symptom referral patterns, why it is important to understand more about these peripheral pain generators specifically in FM, what they are, the different types, perpetuating factors, treatment, and self care.

Title: Teleconference: Celeste Cooper on Myofascial Pain
Date: This Thursday, May 26, 2011
Time: 11:00am Pacific; 2:00pm Eastern; 1:00pm Central; 12:00pm Mountain
This is a Phone + Web Simulcast

To call in dial (503) 290-5016 PIN Code: 783111#

To visit live on the web: http://InstantTeleseminar.com/?eventID=19942302
Sponsor: The Oregon fibromyalgia Support Group
Moderator: Tamara Robinson Staples.

Hope to see you there.

Harmony and Hope, Celeste, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome,, and Myofascial Pain (co-author, Jeff Miller, PhD)

RESOURCES for the presentation:

Ashkenazi A, Blumenfeld A, Napchan U, Narouze S, Grosberg B, Nett R, DePalma T, Rosenthal B, Tepper S, Lipton RB. Peripheral nerve blocks and trigger point injections in headache management - a systematic review and suggestions for future research. Headache. 2010 Jun;50(6):943-52. Epub 2010 May 7.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR.Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

Chen Q, Bensamoun S, Basford JR, Thompson JM, An KN.Identification and quantification of myofascial taut bands with magneticresonance elastography. Arch Phys Med Rehabil. 2007 Dec;88(12):1658-61.

Explore Plastic Surgery - Dr. Barry Eppley
The Importance Of Patient Selection in Migraine Surgery http://exploreplasticsurgery.com/category/migraine-headaches/

Fernández-de-las-Peñas C, Galán-del-Río F, Fernández-Carnero J, Pesquera J,
Arendt-Nielsen L, Svensson P. Bilateral widespread mechanical pain sensitivity in women with myofascial temporomandibular disorder: evidence of impairment in central nociceptive processing. J Pain. 2009 Nov;10(11):1170-8. Epub 2009 Jul 9.

Ge HY.Prevalence of myofascial trigger points in fibromyalgia: the overlap of two
common problems.Curr Pain Headache Rep. 2010 Oct;14(5):339-45.

Ge HY, Arendt-Nielsen L. Latent myofascial trigger points. Curr Pain Headache Rep May 11 [Epub ahead of print]

Ge HY, Fernandez-de-Las-Penas C, Yue SW, Myofascial trigger points: spontaneous electrical activity and its consequences for pain induction and propagation. Chin Med. 6(1):13, 2011.

Ge HY, Nie H, Madeleine P, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen
L. Contribution of the local and referred pain from active myofascial trigger points
in fibromyalgia syndrome. Pain. 2009 Dec 15;147(1-3):233-40. Epub 2009 Oct 9.

Ge HY, Serrao M, Andersen OK, Graven-Nielsen T, Arendt-Nielsen L.Increased H-reflex response induced by intramuscular electrical stimulation of latent myofascial trigger points. Acupunct Med. 2009 Dec;27(4):150-4.

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.

Ge HY, Wang Y, Fernandez-de-Las-Penas C, Graven-Nielsen T, Danneskiold-Samsøe B, Arendt-Nielsen L. Reproduction of overall spontaneous pain pattern by manual stimulation of active myofascial trigger points in fibromyalgia patients. Arthritis Res Ther. 2011. 13(2):R48.

Ge HY, Zhang Y, Boudreau S, Yue SW, Arendt-Nielsen L. Induction of muscle cramps by nociceptive stimulation of latent myofascial trigger points. Exp Brain Res. 2008 Jun;187(4):623-9. Epub 2008 Mar 4.

Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. [May 5 Epub ahead of print].

Gerwin R. Treatment of Chronic Migraine Headache with nabotulinumtoxinA Curr Pain Headache Rep. 2011 May 6. [Epub ahead of print]

Hubbard JE. Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.

Li LT, Ge HY, Yue SW, Arendt-Nielsen L. Nociceptive and non-nociceptive hypersensitivity at latent myofascial trigger points. Clin J Pain. 2009 Feb;25(2):132-7.

Myburgh C, Lauridsen HH, Hartvigsen J. Standardized manual palpation of myofascial trigger points in relation to neck/shoulder pain; the influence of clinical experience on inter-examiner reproducibility. Man Ther. 2010 Aug 31. [Epub ahead of print]

Niddam DM, Chan RC, Lee SH, Yeh TC, Hsieh JC. Central representation of hyperalgesia from myofascial trigger point. Neuroimage. 2008 Feb 1;39(3):1299-306. Epub 2007 Oct 11.

Niddam DM. Brain manifestation and modulation of pain from myofascial trigger points. Curr Pain Headache Rep. 2009 Oct;13(5):370-5.

Partanen JV, Ojala TA, Arokoski JP. Myofascial syndrome and pain: A neurophysiological approach. Pathophysiology. 2010 Feb;17(1):19-28. Epub 2009 Jun 4.

Shah JP, Danoff JV, Desai MJ, Parikh S, Nakamura LY, Phillips TM, Gerber LH. Biochemicals associated with pain and inflammation are elevated in sites near to and remote from active myofascial trigger points. Arch Phys Med Rehabil. 2008 Jan;89(1):16-23.

Shah JP, Gilliams EA. Uncovering the biochemical milieu of myofascial trigger points using in vivo microdialysis: an application of muscle pain concepts to myofascial pain syndrome. J Bodyw Mov Ther. 2008 Oct;12(4):371-84. Epub 2008 Aug 13.

Sikdar S, Shah JP, Gilliams E, Gebreab T, Gerber LH. Assessment of myofascial trigger points (MTrPs): a new application of ultrasound imaging and vibration sonoelastography. Conf Proc IEEE Eng Med Biol Soc. 2008;2008:5585-8.

Xu YM, Ge HY, Arendt-Nielsen L. Sustained Nociceptive Mechanical Stimulation of Latent Myofascial Trigger Point Induces Central Sensitization in Healthy Subjects Man Ther. 2010 Aug 31. [Epub ahead of print]

Zhang Y, Ge HY, Yue SW, Kimura Y, Arendt-Nielsen L. Attenuated skin blood flow response to nociceptive stimulation of latent myofascial trigger points. Arch Phys Med Rehabil. 2009 Feb;90(2):325-32.

Letter to the President of the United States

Dear Mr. President,

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?

Fibromyalgia (FM) is a biological disorder. It is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, restless leg syndrome myofascial trigger points which are knotted up pieces of muscle fiber called trigger points, that keep the brain in perpetual wind-up because of the peripheral pain and dysfunction, including shortening of muscle and neuropathies. 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 and then tell me it is all in my head.

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.

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).

Can we, the fibromyalgia community count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. Present research supports all I have said, but we need more, we need to move the science in the right direction until a cause and a cure is found.

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