Wednesday, January 26, 2011

Thyroid Autoimmunity and Fibromyalgia - Letter to the author

RE:
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.

Laura Bazzichi, Alessandra Rossi, Tiziana Giuliano, Francesca De Feo, Camillo Giacomelli, Arianna Consensi, Antonio Ciapparelli, Giorgio Consoli, Liliana Dell’Osso and Stefano Bombardieri. “Association between thyroid autoimmunity and fibromyalgic disease severity .” Clinical Rheumatology Volume 26, Number 12, 2115-2120, DOI: 10.1007/s10067-007-0636-8


January 25, 2010

Dear Dr. Laura Bazzichi,

I want to thank you and your colleagues for studying the association of autoimmune problems in fibromyalgia.

Because of the life altering fatigue as a fibromyalgia patient, I was diagnosed with chronic fatigue syndrome. Several years later my TSH dropped for several months in a row. While that would normally indicate hyperthyroidism, it was no surprise to me the scan and uptake indicated a thyroid of severely low function. It is the thoughts of my mentor, Devin Starlanyl, and mine too, that in face of a dysfunctional HPA Axis, one may not see the usual abnormal values when assessing thyroid function. Eventually, I did get the proper test and I was positive for antibodies found in Hashimoto’s Thyroiditis. I feel certain there is a difference in Hashimoto's in fibromyalgia patients and may be under-diagnosed. Routine lab values we have come to rely upon may not reflect actual thyroid status in the fibromyalgia patient. It might explain the fatigue associated in some subgroups and lead to confusion of a dual fibromyalgia/chronic fatigue syndrome, now referred to as ME/CFS, diagnosis.

I am a registered nurse, author and have studied much literature for our book. I believe your research is of extreme value. Presently, I advocate for the assessment of myofascial trigger points in ALL fibromyalgia patients, and restless leg syndrome, since newer research suggests their presence. (A copy of my original correspondence, http://fmcfstriggerpoints.blogspot.com/2010_10_01_archive.html). The new proposed criteria, while addressing the centralization of fibromyalgia, exclude this assessment. Certainly, an underlying autoimmune disorder might explain why myofascial trigger points in fibromyalgia resist the usual treatments, and it might explain why trigger points are easily activated in the fibromyalgia patient.

Thank you again for all of your hard work, and please thank your associates for me.

Sincerely, Celeste Cooper, retired RN, author, past educator and author of CEUs for MO State Board of Nursing
Website: www.TheseThree.com

Cc:

American College of Rheumatology % Amy Miller
The American Nurses Association, Editor
Robert Bennett,MD, FRCP
Richard W. Clark, NIAMS Office of Communications and Public Liaison
Daniel J Clauw, MD
Shari Ferbert, Advocates for Fibromyalgia Funding, Treatment, Education, & Research
Fibromyalgia Coalition International,
Mary Ann Fitzcharles, MD (Canada)
Robert Gerwin, MD, FAAN
Donald L Goldenberg, MD
Alan Gurwitt, President Massachusetts CFMDS/ME & FM Ass.org
Cheryl Herrington, Fibro and Friends, Kansas City
Robert S Katz, MD
Phillip Mease, MD
National Fibromyalgia Association
National Fibromyalgia Research Association
National Fibromyalgia Partnership, Inc.
I Jon Russell,MD, PhD
Anthony S Russell, MD (Canada)
Marly Silverman, P.A.N.D.O.R.A (Patient Alliance for Neuroendocrineimmune Disorders Org for Researach and Advocacy)
Devin Starlanyl, Author, Researcher
Rocky Mountain CFS/ME & FM Association
Roland Staud, MD University of Florida, Gainsville,
Kristin Thorson, American Fibromyalgia Syndrome Assoc. Fibromyalgia Network
Muhammad B. Yunus, MD
John B Winfield, MD
Frederick Wolfe, MD

Sunday, January 23, 2011

The Benefits of Being Sick



“A successful person is one who can lay a firm foundation
with the bricks that others throw at him or her.”
~David Brinkley


I believe that for every negative there is a positive, that for every up there is a down, that without the existence of these phenomena, life would be plain boring. Not that being bored doesn’t have its rewards too. Being bored, I asked myself today….

What are my benefits to being sick?


• Support
• New friends
• New way of looking at illness
• Embracing alternatives(meditation, visualization, prayer, yoga, or tai’ chi)
• Getting to really know myself
• Thinking more positive
• The opportunity to blog
• Identifying stress that might otherwise be overlooked
• Achieve a higher level of awareness for people and things
• Learning the importance of beginning each day with an affirmation
• Truly finding “joy in the joy of others”

Thank you my friends for being sick with me, and to those who aren’t sick but stand by me never the less, I appreciate you.

Harmony and Hope, Celeste

Tuesday, January 18, 2011

From Lotus Guide: Directory for Healthy Living



For many diseases in our world, we are finally learning the treatments using only allopathic or only homeopathic remedies are seldom the best approach in and of themselves. Much of the confusion has come from the polarized arguments of both sides attempting to defend their points of view, but like most truths the answers are often found in the middle ground, hence “integrative medicine.” I found this book, at 448 pages, to be very comprehensive and I highly recommend it for anyone searching for a balanced approach for the treatment of these diseases.

~Dhara Lemos, Lotus Guide


More about the book can be found here

Available at:

Inner Traditions, Bear and Company, (Publisher, imprint Healing Arts Press) here.

Amazon.com, here.
Kindle, here.

Barnes and Noble, here.
Nook Book, here.

Booktopia, here.

Google Books, here.

Simon and Schuster, here.

Amazon UK, here.

Amazon Canada, here.

Amazon India (free shipping), here.

Australian Amazon Associate (note: you will need to type in the book title), here.

Alibris Books, here.

ebay, here.

Abe Books, here.

Kobo ebooks, here.


~ • ~ • ~ • ~ • ~ • ~


Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com

Sunday, January 9, 2011

Understading Migraine and the Role of Myofascial Trigger Points

Migraine headaches co-exist in both fibromyalgia (FM) and chronic fatigue syndrome (CFID), and can be a great factor in decreasing our pain threshold. It is like every nerve ending we have is fresh, raw and exposed. One more insult has us ready to explode.

Though we still don’t know for sure what causes migraine, we are learning. Cervicogenic migraine is a migraine attack that is perpetuated or preceded by neck pain. http://www.jaoa.org/cgi/content/full/105/4_suppl/16S For me, and I suspect many others, I can feel the golf ball starting to form on the right side of my neck at the base of my skull, and I can feel little pea size or smaller trigger points even up my scalp. (I do have significant cervical disease, but this is different, it is myofascial, in the muscle). Before long, a whole cascade of events begins and the once latent trigger points (those that can be felt but aren’t painful until pressure is applied) in my face develop into full blown active TrPs, ones that hurt and radiate pain seemingly without warning without even touching them. I can feel them with my fingers and when I apply pressure, this helps if I can get them to release. If treatment is successful, you can feel them release under your finger, and sometime can feel the tell tale local twitch response. Treating all of these TrPs can help with the attack. It is when I neglect treating them before this point that I am more likely to have this migraine, and the greater the neglect, usually the more intense the headache.

Research now indicates that tension type headaches can certainly be the result of myofasical trigger points. See the following study and the comment by Devin Starlanyl, author and pioneer on understanding the centralization of FM and the peripheral input from myofascial trigger points

Fernandez-de-las-Penas C. 2010. New evidence for trigger point involvement in tension-type headaches. J Musculoskel Pain. 18(4):354-360. “Tension-type headache (TTH) is the most common form of headache and its chronic form (chronic tension-type headache (CTTH)) is one of the most neglected and difficult headaches to treat. TTH is an overarching syndrome of ‘featureless’ headaches characterized by nothing but pain in the head.The term ‘tension-type’ has been chosen by the International Headache Society (ICHD-II) to offer a new heading underlining the uncertain pathogenesis, but indicating that some form of muscle tension may play a role.Hyperalgesic and allodynic responses support the role of both peripheral and central mechanisms in the development of the clinical picture of CTTH. In fact, it is suggested that central sensitization, a reduction in inhibitory pain mechanisms, and peripheral sensitization of muscle nociceptors are mechanisms involved in perceived pain in CTTH.Subjects who develop TTH have showed normal tenderness scores and pressure pain threshold levels before the beginning of the symptoms, which suggests that the mechanical hypersensitivity is rather a consequence than a risk factor for the development of TTH.” “Previous studies have found that TTH patients described their head pain as pressing, tightening, or soreness. Dull and tight heaviness are also pain quality features of TTH attacks. These pain features resemble the descriptions of clinically referred pain elicited by TrPs as described by Simons et al.” “Recent clinical studies have clearly demonstrated the relevance of active TrPs in CTTH. In fact, recent studies have described the referred pain elicited from two extra-ocular muscles, i.e., superior oblique and lateral rectus in patients with CTTH.” [DJS] http://homepages.sover.net/~devstar/doctor_pages.htm


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.” (Book excerpt)

Migraines alter my life, my ability to think rationally, and breakdown my defenses. My migraines always start behind my right eye, whether they start from weather changes, an oops with my diet, stress, or my myofascial TrP disease (which scientists now believe all fibromyalgia patients may have in addition to the body-wide centrally mediated tenderness) they are still intense. Usually, when my migraines switch to the left, I know it is on its way out. Rarely, but when the attack begins on the left, it isn’t as severe, nor does it last as long. Most of my refractory migraines are cervicogenic in nature, and I believe that is because of the number of neglected trigger points and the connection with fibromyalgia. This peripheral pain impulse to my brain, keeps it in perpetual wind-up, not allowing it to function as it should to send out natural endorphins and chemicals to counteract the original upset.

Migraine perpetuators related to myofascial trigger points

Bruxism is a fancy term for grinding teeth. This condition can aggravate facial trigger points, interfere with restorative sleep, cause teeth erosion, and, among other things, contribute to migraines. If you catch yourself grinding your teeth during the day, you most likely grind at night too, and according to my dentist, bruxism in sleep is four times more forceful. Is it any wonder that myofascial trigger points develop? Assistive devices, such as a nighttime mouth guard, can inhibit some of the pain associated with the disorder. Proper alignment, may abate the development of TMJ/TMD, but the force of bruxism can be a great contributor to the development and recurrence of TrPs in the face and jaw.

Temporomandibular dysfunction (TMD/TMJ), occurs when your chewing muscles are uncoordinated. This puts apposing muscles under undue stress and increases the occurrence of myofascial TrPs. Temporomandibular dysfunction is often associated with chronic muscular headaches and craniofacial pain. Pain can also extend to the ears, neck, and shoulders. Some people experience clicking and grinding noises during movement of the jaw, this limitation could be related to untreated or undertreated myofascial trigger points and pain that occurs anywhere there is muscle, including inside the mouth.

Poor posture and injury can also aggravate the neck and surrounding/supporting muscles, and trigger points in the neck can refer pain to the head and other places. (There are other topics here on my blog that explain how trigger points develop and cause pain and dysfunction).

Skeletal anomalies as the result of injury, surgery, spinal degeneration, or birth defect can put strain on opposing muscles and increase incidence of myofascial trigger points.

Treatment

First find the TrP in the taut band of muscle. It may not be easy to do initially, it takes practice. If you can find a good myofascial therapist to help you, such as a chiropractor or physical therapist that does active release therapy (ART), http://www.activerelease.com/ or a myofascial trigger point therapist, http://www.myofascialtherapy.org/ to help you, and self treatment in between, you may be able to lessen your headache frequency or intensity if they are cervicogenic. With a myofascial tool or your fingers apply pressure and back off to about 70-80%, hold the pressure for about 30-60 seconds. You may feel the TrP release. Some are very resistant and may take several treatments. Also remember that the TrP you are treating may NOT be the primary TrP causing the development of a secondary or satellite TrP. I hope you will pick up a good book on self treatment of myofascial trigger points. My favorite is Clair Davies (Books are listed below).

Research on Botox (trademark) for migraine relief was promising, but the jury is still out on that one.

Wishing you all a migraine free day, lamb hugs, Celeste

Helpful links for understanding migraine
http://www.achenet.org/
http://www.webmd.com/migraines-headaches/news-features
http://headaches.about.com/od/internationalorgs/International_Headache_and_Migraine_Support_and_Advocacy.htm


Book Resouroces:
• Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue
Syndrome and Myofascial Pain
• Devin Starlanyl & Mary Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome
• Clair Davies, The Trigger Point Therapy Workbook
• Valarie DeLaune, Trigger Point Therapy for Headaches & Migraines
• Donna Finando, Trigger Point Self-Care Manual
• Hal Blatman, Art of Body Maintenance: The Winner’s Guide to Pain Relief

Other research:

Gerwin RD. Fibromyalgia Tender Points at Examination Sites Specified by the American College of Rheumatology Criteria Are Almost Universally Myofascial Trigger Points. Curr Pain Headache Rep. 2010 Oct 27. [Epub ahead of print]
Department of Neurology, Johns Hopkins University, Baltimore, MD, 21287, USA

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. Laboratory for Musculoskeletal Pain and Motor Control, Center for Sensory-Motor Interaction (SMI), Department of Health Science and Technology, Aalborg University, Fredrik Bajersvej 7-D3, Aalborg, DK-9220, Denmark.

Saracco MG, Valfrè W, Cavallini M, Aguggia M. Greater occipital nerve block in chronic migraine. Neurol Sci. 2010 Jun;31 Suppl 1:S179-80.
Neurological Department, ASL AT-Asti, Ospedale Cardinal Massaia, Via Conte Verde 125, Asti, Italy

Delstanche S, Schoenen J. Botulinum toxin for the treatment of headache: a promising path on a "dead end road"? Acta Neurol Belg. 2010 Sep;110(3):221-9.
Headache Research Unit, Department of Neurology and GIGA-Neurosciences, Liège University.

Thursday, January 6, 2011

A better understanding of Piriformis Syndrome.

Book Excerpt (copyrighted)

Trigger points can mimic every symptom of degenerative disc disease. If your physician has ruled out degenerative disc disease, or you do not respond to the usual treatments for the disease, please consider the presence of untreated TrPs. Trigger points occurring in muscles—intervertebrals; quadratus lumborum; piriformis; or gluteus maximus, medius, and minimus—could be the culprit. © (Cooper and Miller, pg. 87)

The piriformis is a very small, deep muscle that extends from the side of the sacrum (lowest backbone, tailbone) to the top of the thighbone at the hip joint, passing over the sciatic nerve. When a short or tight piriformis is stretched, it can compress and irritate the sciatic nerve causing the pain of sciatica. Referred pain from the piriformis is felt in the sacrum, buttocks, and hip. A tight piriformis muscle can also put pressure on the pudendal nerve and cause pain in the groin, genitals, or rectum. In severe cases, piriformis syndrome could be responsible for buttock atrophy. The pain can cause altered gait and guarding, which can cause development of secondary musculoskeletal difficulties. Treatment of piriformis syndrome calls for releasing the entrapped sciatic nerve. I have found myofascial release and specific TrP treatments to be beneficial.(c) (Cooper and Miller, pg 103-104.)

Devin Starlanyl,  show cases 2010 research:

Aydemir K, Duman I, Tugcu I et al. 2010. Piriformis syndrome presenting with foot drop diagnosed with magnetic resonance imaging: a case report. J Musculoskel Pain. 18(3).261-264. Abstact at:
http://www.ingentaconnect.com/content/apl/mup/2010/00000018/00000003/art00009?crawler=true

Comments from my mentor, friend and pioneer in understanding FM and the role of myofascial trigger points Devin Starlanyl.

“Piriformis syndrome can cause foot drop. Magnetic resonance imaging can help earlier diagnosis and treatment.” Piriformis syndrome is a description, not a diagnoses. The authors did not note that myofascial TrPs are the most common cause of this condition, and can cause foot drop as noted in Travell and Simons Myofascial Pain and Dysfunction: The Trigger Point Manual, Vol II. Trigger points were not mentioned, although the authors noted the palpable mass that responded to steroid injection into the mass, resulting in resolution of the syndrome. It would have been interesting to see if the “mass” responded to TrP injection of local anesthetic. Steroids are undesirable and unhelpful in most TrP injections. DJS


I hope you found this information helpful.

Harmony and Hope, Celeste


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

Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, 2nd ed., by Devin J. Starlanyl, M.D., and Mary Ellen Copeland, M.S., M.A. Oakland, Calif.: New
Harbinger Publications, Inc., 2001.

Myofascial Pain and Dysfunction: The Trigger Point Manual by David Simons, Janet Travell, and Lois Simons, 2nd ed. Philadelphia: Lippincott Williams and Wilkins,
1999.

Wednesday, January 5, 2011

January - A good time to organize your medical records

As we begin the new year, and with nearly all doctors being digital ready, the time is right for organizing your medical records.

A good physician will appreciate your involvement and by being organized you can save them time, and relate your symptoms more readily and effectively, making your visits more productive. Our publisher has been so kind to allow you to photocopy the useful tools to document your symptoms, needs, and track progress and setback, hopefully identifying measures that either help or hinder your pain and fatigue.

Please pay particular attention to the Useful Tools and the end of each chapter in the book's contents. Each chapter builds on the previous so you can gather information as you go. Harmony and Hope, Celeste.


Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection


Contents
Foreword by Devin J. Starlanyl ix
Preface xi
Introduction 1

1 Fibromyalgia Pain, Chronic Fatigue Immunodysf unction, and Chronic
Myofascial Pain from Trigger Points
3

All about Fibromyalgia 5
Summary Exercise: FM 2Chronic Fatigue Immunodysfunction—The Muster to Master 27
Summary Exercise: CFID 38
Chronic Myofascial Pain—Nerve to Muscle 40
Summary Exercise: CMP 56

Chapter Summary:
FM/CMP–FM/CFID—Is It a Double Cross? 58
Glossary of Terms Introduced in Chapter 1 that Describe Pain 63

2 Communicating Your Health Care Needs 65

Relating Your Symptoms and Health History 66
Identifying Aggravating and Alleviating Factors 73
Coexisting Conditions 75
Communicating with Your Physician and Other Health Care Providers 113

Summary Exercise: Clear Expressions 122

Useful Tools for Communicating with Health Care Providers 126
Medication Log 127
Symptom Inventory Sheet 128
Anatomical Diagram of Pain 130
Health History Log 131

3 Dialogues Within and Without 132

Journal Writing: An Internal Dialogue 133
Soliciting the Support You Need 140
Sample Letter Soliciting Support 144
Relationships: Having Them, Keeping Them, and Knowing
When to Let Them Go 146
Advocacy—A Constructive Way to Vent 151

Summary Exercise: Reaction to Interaction 153

Useful Tools for Inner and Outer Self-expression 156
A Baker’s Dozen: Thirteen Tips for Expressing Your Feelings
through Poetry 157
Interactive Pain/Energy Meter 159
It Takes Two to Tango: Rules for Possibly the Most Important Date in
Your Relationship 160
Sample Advocacy Letter 161

4 My Body Is Matter and It Matters 162

Understanding and Treating Pain 163
Managing Your Diet 190
Exercise—Use It or Lose It 198
Bodywork—Toiling over the Anatomy 213
Medical Specialists and Therapists 219
Health and Functionality Therapists 223
Chapter Conclusion 236

Summary Exercise: Exercising Your Options 237

Useful Tools for a Healthy Lifestyle 240
Diet Assessment Guide 241
Stretches for Every Part of Your Body 243

5 The Power of Mind, Body, and Spirit 252

Depression—Overcoming the Doldrums 253
Spirituality 265
Accepting What Is 271
Other Paths 277

Chapter Conclusion 287

Summary Exercise: Expanding Your Options 289

Useful Tools for Connecting with Your Spiritual Center 291
Breathing Meditation for People with FM, CFID, and CMP 292
Guided Meditation for Healing 292
New Thoughts on Insomnia 293

6 Dealing with Circuit Overload 294

Brain Fog—Symptoms of Blowout before a Power Failure 295
Time Management—An Exercise in Energy Conservation 302
Crisis Management—Dealing with Major Life Events 307

Chapter Conclusion 309

Summary Exercise: Unloading the Gray Matter 309

7 Approaching the System Systematically 312

The ADA and the EEOC 312
Social Security Disability Determination 318
Patient Rights 336
Miscellaneous Programs and Help 344
Confidentiality and HIPAA 352

Chapter Conclusion 356

Useful Tools for Navigating the Health Care System 357
Interaction Worksheet for Important Calls and Meetings 358
Treating Health Care Provider Log 359
Chronological Health Record 360
Table for Determining Disability Status for Those Limited to
Sedentary Work 361
Table for Determining Disability Status for Those Capable of Light
Physical Work 364

Epilogue 366

Resources for Maximizing Health Care, Relationships, and
Emotional Well-being 369
Glossary of Acronyms 391
Notes 395
Index 424

Monday, January 3, 2011

Pain Facts of an Advocate©

Fatigue challenges us,
Action defines us.
Collaboration empowers us,
Tenacity unveils us
Spirit enlightens us, and

Pain unites “The Advocate”

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)

Celeste's Website

Celeste's Website
Click on the picture