Thursday, May 27, 2010

Is Lyrica the drug we have been led to believe it is?

I have questions.

Is Lyrica having the effects the pharmaceutical industry would like us to think?
Are the benefits worth the risks?
Are doctor's explaining the drug interactions?

I have questioned this from a personal standpoint. After a trial run, I experienced severe body wide swelling, to the point I could not use my hands or bear weight on my feet. My doctor never discussed the drug interactions with Lyrica and my pharmacist didn't pick it up because it was given to me as a sample. It has made me wonder how many others have found that the benefits do not outweigh the risks. Now there are scientists that are asking the same questions.

[Pregabalin for fibromyalgia -can we rely on the pharmaceutical industry?]

[Article in Norwegian]

Holtedahl R.

Lamb hugs, Celeste, RN, author

" One broken person to another, navigating through life with invisible illness, learning to turn tragic into triumph, and accepting that when despite doing everything right, there are just some days we do not prevail, and that's OK."

Tuesday, May 25, 2010

I Will Not Be Broken- Never Give Up – My Story

My story about why this famous quote means so much to me.

“Many of life's failures are people who did not realize how close they were to success when they gave up.”-- Thomas Edison

I started therapy in an attempt to overcome depression associated with the loss of work and financial support from a job that I loved and dedicated myself to, nursing. I had no idea I had fibromyalgia, chronic fatigue syndrome or chronic myofascial pain. All I knew is that I hurt, couldn’t sleep, and I could no longer remember where things were kept, even at work, remember simple tasks or learn easily like I once had. This cognitive deficit was documented by a neurocognitive exam and I knew I needed help. My then therapist is my now co-author. This book started as an entry in my journal in the year 2000, and was to be an exercise for maintaining what cognitive abilities I had left. Sometime in 2001, I realized I was earnestly putting myself into the project, and it began to morph into something more than journal entries. I took the next three years to research and write the manuscript, much longer than the average person my age, education, and background, but I was glad I had accomplished what I set out to do. Through this process I learned so much about my disorders, how to cope, how to pace, and how not to expect more than I had to give. Those of you reading this know how unpredictable these ugly illnesses can be.

I spent the next twelve to eighteen months looking for a publisher. I read how hard that would be as a first time author, but I had writing experience as an educator and a contributor to the Missouri State Board of Nursing Continuing Education Program. After all, this developing query letters was exercising the half brain I had left. Oh, I got discouraged all right, but I knew it was about having the right product for the right publisher at the right time. I experienced so many rejections, but I learned to handle constructive criticism, which was empowering to me. Then, bingo, I got a taker and a contract with a small publishing house in St. Louis. But the story doesn't end here. The owner passed away 3 months after signing the contract. The family tried to keep it going for the next THREE years. Yes, 3 years. I kept being put off, and could never get hold of my editor, yet I was bound by a contract and I had no money to fight what was happening or join a union that could. Now I had seven years invested and I constantly had to keep the information updated.

In December 2008 I called to see if the typesetter got the final piece he needed, I was due to go to print in 3 weeks. To my great dismay, and I say that VERY lightly, the phone line had been disconnected, and the publisher took down their website. The family closed the doors without warning to any of their pending authors.

I started down that black hole again, first I am so ill I cannot work, then I pour my heart and own health into what I considered to be a way of helping others, which as a caretaker for so many years was important to me. I couldn’t help thinking that maybe this just wasn’t supposed to be. Shot down again by the situation of life. But then I was lifted out, after my pity party, I began to look up.

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

If you know me, you know I love quotes from famous or not so famous people. It was the strength I received from remembering those words that led me to understand; this was only a bump in the road. It only took me about another six to ten months (remember my time lines might be a little off, but you get the idea) to find a new publisher. After sending out the manuscript to many and probably over 100 queries, and every publisher has their own idea on how they want things submitted, I hit pay dirt.

My relationship with Inner Traditions/Healing Arts Press was meant to be from the beginning, I just didn’t know it way back when. The WPI discovery came out just in time to get XMRV in the book, though only a small piece, it offers hope. My editor was already on top of it. Two days after I had feverishly sent off the information on XMRV I wanted included, just days before going to the typesetter, my editor also contacted my project manager about this breaking news.

So you see, I am one fortunate lady. I was blessed with a mother and grandmother that believed in the power of persistence and that any voice can make a difference. I have stood on the shoulders of many giants and for them I am grateful.

And now I must honor my mentor, the person who shared time from her life to make me a better writer, and the one who told me to NEVER GIVE UP, Devin Starlanyl. Devin J. Starlanyl is former director of the Fibromyalgia and Chronic Myofascial Pain Institute and is the author, with Mary Ellen Copeland, of Fibromyalgia and Chronic Myofascial Pain: A Survival Manual and The Fibromyalgia Advocate.

My friend, you are one in a million. You see, I am doing my best to pay it forward.

Lamb hugs

I Will Not Be Broken

Though I may bend, you will not break me,
I am determined, you will not flaw my character,
Because of the strength of others bestowed upon me,
I will persevere, this I know about myself.

God, lift me up from the dark hole that may imbibe me,
Continue to show me how to embrace the beliefs of others,
Help me maintain my integrity,
And embrace the universe with resolve.”

Celeste Cooper

Thursday, May 20, 2010

Investigative Reporter - Making the Headlines

What is that nagging sensation that you just cannot put your finger on? Many describe this as your sixth-sense; it is that instinct that tells you an invader is taking a foothold on you.

Become a sleuth, be an investigator, interrogate yourself and pay attention to what your body is saying. Though proper diagnosis is important, it is not the be all, or end all, as so many of us know firsthand, diagnosis, now what? We maintain forward momentum by paying attention to a new symptom that has become the intruder in our bodies and our lives. When we have more than one illness, many of these symptoms may overlap. This is why we need to zero in on specific needs. We can do this by paying attention and learning about our body, what it likes, and what it doesn’t.

First, for the FM and CMP patient, chronic pain has lost its effectiveness as a warning, as has fatigue in the CFID patient. Unlike acute pain or fatigue, which sounds out an alarm, notifying the fire house to send out the brigades, the chronic pain/fatigue body turns its back on the alert. It’s like the little boy that cried wolf too many times. So we have to take on a new role, investigative reporter.

We need to become an active participant, using that sixth sense, asking questions of ourselves, and making the “headlines” in our own newspaper. Document how food, co-existing conditions, exercise and medications affect YOU! Not Sally, Joe, or your best friend. After all, they should all be doing their own investigations, and they all have their own grocery cart of health issues. Sally might also be diabetic, Joe might have degenerative disc disease and your best friend might not have FM, CFID or CMP. There is no cookie cutter remedy; variety is the spice of life. Explore different options for exercise, therapists, meditation, and medications, even doctors if you have not been happy with your treatment or have been made to feel like a bystander in your own healthcare. Pay attention to common co-existing conditions and how they might affect FM, CFID and/or CMP. You have choices, and knowledge is power.

Having options fosters hope. Reach for the gold ring and maintain forward momentum, nurturing all aspects of well-being, physical, mental, emotional and spiritual.
My greatest desire is that no one feels, isolated, alone, or without resources.

"A journey of a thousand miles begins with a single step."
--Chinese Proverb

Saturday, May 8, 2010

Facing Off with Co-existing Conditions

Facing Off with Co-existing Conditions

Why is identification of co-existing conditions important, I ask?
There are three reasons that come to mind:

1)Eliminate the possibility that your symptoms are from something other than FM, CFID or CMP.
2)Identify the role another condition can play. Proper treatment should not be delayed because of a misdiagnosis.
3)Co-existing conditions can play a huge role in aggravating or predisposing you to FM, CFID or CMP.

Following are some of our co-existing conditions that while we cannot change them, we can learn to manage them, or at the very least key in the fact that when they are on their own rampage,we should run for cover.

AIDS/HIV infection
Ankylosing spondylitis (AS)
Bursitis (inflammation of the fluid sac, the bursa which keeps our joints from rubbing bone on bone)
Bruxism (teeth grinding)
Carpal tunnel syndrome
Complex regional pain syndrome (CRPS) or RSD
Degenerative disc disease
Foot problems (included but not limited to tarsal tunnel syndrome)
Gulf War syndrome
Headaches, severe
Hypermobility syndrome
Reactive hypoglycemia
Hypothyroidism (including but not limited to Hashimoto’s, and autoimmune disorder of the thyroid)
Hypometabolism (such as adrenal insufficiency, thyroid and insulin resistance)
Infection (viral and bacterial)
Inner ear dysfunction
Interstitial cystitis or irritable bladder
Irritable bowel syndrome (IBS)
Leaky gut syndrome
Lupus—systemic lupus erythematosus (SLE)
Lyme disease (LD)
Meralgia paresthetica
Multiple chemical sensitivity
Multiple sclerosis (MS)
Neurally mediated hypotension (NMH)
Neuralgia (nerve pain)
Neuralgia-inducing cavitational necrosis (necrosis of the nerve of the teeth and jaw)
Osteoarthritis (OA)
Peripheral neuropathy
Periodic limb movement (PLMD)
Piriformis syndrome
Plantar fasciitis
Polymyalgia rheumatica (PMR)
Post-polio syndrome (PPS)
Posttraumatic stress disorder (PTSD)
Prolapsed mitral valve
Raynaud’s phenomenon or disease
Restless leg syndrome (RLS)
Rheumatoid arthritis (RA)
Seasonal affective disorder (SAD)
SICCA-like symptoms (dry mucosa)
Sjogren’s syndrome (an autoimmune disorder related to arthritis)
Temporomandibular dysfunction (TMD/TMJ)
Thoracic outlet syndrome (TOS)

Other aggravating factors:

Poor posture
Repetitive movement
Structural deformity, scoliosis, lordosis, kyphosis one foot shorter than the other (explore the use of prosthesis to minimize the effects)
Overdoing and paradoxically, under-doing
Poor time management skills
Poorly managing cold intolerance
Poorly identifying problems with medication and therapy
Ignoring diet
Thinking your symptoms will wait

*Note, not everyone has these co-existing conditions, but it is important to identify yours, and report new or escalating symptoms to your physician.
We need to take care and do things to minimize the effects of a flare, such as taking it easy, avoiding known stressors (this includes people, don’t let your lack of sleep and agitation from unrelenting symptoms get in the way and fuse a bomb that will only put you further behind, or possibly blow up), and eating foods you enjoy but know will put undue stress on your body. (It’s okay, we all eat things we know aren’t always the best thing to do, but we must identify the weakness when our co-existing conditions are threatening to become our own personal epidemic). We should also avoid putting too many things on our to-do list, and last but certainly not least; we must not fail to recognize that an out of control co-existing condition won’t take care of itself.

"I’m not going to vacuum ’til Sears makes one you can ride on."
--Roseanne Barr

The book covers each condition and who it might relate to FM, CFID or CMP individually, and offers some suggestions for dealing with co-existing conditions specifically.

As always, Lamb hugs, Celeste, author
"Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection

Monday, May 3, 2010

Advocacy letter supporting awareness, education, research, & insurance reimbursement

In support of "Awareness Day" for fibromyalgia and chronic fatigue syndrome I have sent the following letter to the people posted at the end of the letter. Please feel free to use any of the information herein to write to your congressman or any of the people in the links provided.

"Though our bodies are weak our determination is unbreakable, standing tall, standing strong, standing united and staying committed to finding a cure."

Dear compassionate gentlemen and gentlewomen,

What would you do if you suddenly became ill with unexplained life altering fatigue, severe body-wide pain, or knotted up pieces of muscle fiber in your muscles, but your doctors don’t know what it is, don’t put their hands on you, or worse yet, don’t know what treatments could help you? This is what the fibromyalgia, chronic fatigue syndrome and chronic myofascial pain patient deals with on a regular basis.

According to the Centers for Disease Control and Prevention, approximately 2 percent of the U.S. population has fibromyalgia, a condition that exists because of dysfunction of the hypothalamus-pituitary-adrenal axis causing central sensitization. Studies show that more than one million Americans have the severe debilitating fatigue, swollen lymph nodes, poor healing and other signs of immunologic and autonomic dysfunction associated with chronic fatigue syndrome. Chronic myofascial pain and dysfunction from untreated myofascial trigger points is frequently ignored, yet myofascial injury and illness is a leading cause of physical dysfunction and missed work. These are serious statistics and the health of our nation has been and continues to be at risk. Lack of awareness in the medical community, the insurance industry and the political arena is a serious issue. When a patient is misdiagnosed or the provider is clueless to the etiology or treatment of these disorders the cost of health care escalates needlessly.

I want to see curriculum changes for those who treat us, improving education and dissemination of information for these illnesses. Those who coordinate the Harvard Nurses’ Health study, one of the largest and longest studies on women’s health, have agreed to consider and discuss this topic for inclusion in further studies. Dr. Donnica Moore, the spokesperson on women’s health issues on Good Morning America is propelling information into the media and she has been a guest speaker on Dr. Oz regarding chronic fatigue syndrome. Though statistics show gender prevalence for FM and CFS, the male community is also affected at an alarming rate. We need more research.

Replicated brain mapping studies supports science regarding a disruption of the HPA axis in fibromyalgia. In addition, a recently identified retrovirus called XMRV was linked to the debilitating neuroimmune disease, chronic fatigue syndrome also known as Myalgic Encephalomyelitis. This groundbreaking research by the Whittemore Peterson Institute (WPI), in collaboration with the National Cancer Institute and the Cleveland Clinic, was published in the journal, Science, one of the world’s leading journals of original scientific research, global news and commentary. And last but not least, we know scientifically that myofascial trigger points occur as a result of excessive release of the neurotransmitter acetylcholine where nerve meets muscle and when it becomes a chronic myofascial pain problem, it is the result of its co-existence with a centrally mediated disorder such as fibromyalgia, migraine headaches and others, causing a wind-up phenomenon which interferes with messages to the peripheral muscle compounding pain and dysfunction. Ask yourself, did I, my insurance company, or country know any of this?

We need your support for insurance provisions moving alternative therapies into the mainstream. Therapies that have been scenically and clinically proven, such as, myofascial trigger point treatment, massage, acupuncture and other methods can improve muscle function and provide feedback to the brain that will promote wellness.

I am counting on you to be part of the movement for change. I look forward to hearing your strategies for becoming involved and making the necessary changes regarding the health of so many Americans.

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,

In some instances, the letter was sent to the only contact information I could find, or had to be altered to meet the specifications of the site. This letter was sent to:

American Osteopathic Association,,, and the mentoring program

Missouri Senators, Kit Bond and Claire McCaskill
Find your Senator,

American Academy of Family Physicians

American Academy of Pain Management

American College of Rheumatology,, and the ACR directly from their website.

Patient action Network

American Medical Association inquiries.shtml

The World Health Organization,
American Neurology Association,

The American Association of Clinical Endocrinologist,

National Association of Insurance commissioners,
Local yours by state,

The Whitehouse, President Obama and Vice-Pres. Biden

Represenative, Sam Graves
Find yours at Contact information

State Governor of MO, Jay Nixon
Finding your governor,

Sunday, May 2, 2010

Chest Wall Pain, Esophageal Spasm, and GERD

I am hearing in discussions complaints of chest wall pain, problems taking a deep breath, difficulty swallowing and acid reflux symptoms. I also have these problems so I can speak to this topic with the experience as a patient. Since I have FM, CFID, and chronic myofascial pain (CMP) from myofascial trigger points, I suspect that chest wall pain, esophageal spasm and GERD either co-exist, and are being aggravated by my myofascial trigger points (TrPs), or the untreated TrPs are causing the symptoms. Either way, the TrPs need to be treated.

Having many TrPs in the chest wall and referral pattern areas makes them difficult to treat. The theracane is too hard because my chest is exquisitely tender and having FM intensifies the pain, so I use my fingers and knuckles which exacerbates other TrPs in my hands and forearms. I think that having someone to help with trigger point pressure therapy is important, such as a therapist that is familiar with the work of Travell and Simons.

The study "The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome are Frequently Associated with Myofascial Trigger Points." (Hy, Wang, et al., link, reinforces what I talk about in my book and particularly speaks to the topic of this article. Being properly diagnosed is very important. FM is central nervous system disorder,CMP is a peripheral problem at the junction where the nerve meets muscle forming what we call trigger points. Even though these are separate disorders, then can and often do co-exist in the same patient. When this happens they feed off each other. The trigger points of CMP keep the FM brain in a perpetual hypersensitive state, which blocks the pain relief response. When they co-exist it muddies the diagnostic waters and makes treatment more difficult. It appears from this study that it is possible all FM patients also have CMP (as always, the study will need to be replicated). However, all CMP patients do not have FM, they are two distinct and separate disorders.

As always, explain your symptoms to your physician and rule out other causes, and explore treatment options for your symptoms. There are, and I take, medications for acute esophageal spasm, which can mimic the symptoms of a heart attack, as can GERD. CAUTION, always seek immediate treatment for chest pain if this is a new symptom for you. DO NOT assume it is related to the things discussed here, unless heart disease or acute attack has been ruled out.

If you do not have heart disease, have been diagnosed with or have symptoms of chest WALL pain, esophageal spasm or GERD, FM or FM/CMP complex, check for those knotted up lumps of muscle fiber in a taut band of muscle. TrPs in the intercostals (muscles between your ribs) are usually easily felt unless they are behind the ribs, in which case, they are not treatable, but most intercostals TrPs are thankfully on the outside. Also, TrPs in the pectoralis, sternalis, scalene, and serratus anterior, muscles can refer pain to the chest. Trigger points may also be more difficult to locate if they are behind other muscles, or the taut band of muscle with the TrPs is too tight to locate them, in which case you will need to massage the muscle until it lets up allowing you to feel the TrP so you can treat it. Suspicious areas are those that are tender to touch and radiate pain to other areas with the muscle is manipulated. Chest wall TrPs can also cause difficulty taking deep breaths, thereby limiting the healing oxygen to our blood cells, and can cause a host of other problems.

Twisting of the upper body, slumping over a keyboard, not using proper body mechanics when doing activities, walking or sleeping; lifting too much weight, excessive reaching, a cold or cough, trauma, surgery, improper breathing techniques (chest or shallow breathing), overuse of unconditioned muscles, carrying a baby, backpack, or heavy purse, any activity that causes heavy breathing (exercise or anxiety), arm movement (such as swimming, tennis, racquet ball, golf, weight lifting, or bowling when you are not used to it), can be aggravating factors for the development of TrPs in the chest wall. Metabolic disorders and other conditions such as CFS and GWS can also make TrPs more difficult to treat.

At the very least, if TrPs are present as a co-existing condition, esophageal spasm and GERD symptoms should be treated, paradoxically, these co-existing conditions could aggravate CMP and the pain sensitivity created by the FM brain.

Learn more about the effects of FM, CFID and CMP, co-existing conditions, therapies, and coping in the book.

Lamb hugs, Celeste, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body connection.

“One broken person to another, navigating through life with invisible illness, learning to turn tragic into triumph, and accepting that when despite doing everything right, there are just some days we do not prevail, and that's OK.”

Celeste's Website

Celeste's Website
Click on the picture