Wednesday, January 23, 2013

Women, Men, Autoimmune, Neurological disease, and Fibromyalgia: Meeting Gender Bias Head On

The women to men ratio affected by fibromyalgia are 7:1 or 8:1, but are these statistics accurate?  

We once thought more men were affected by heart disease than women and we now know that is not the case, and even more alarming, women’s heart attacks are twice as likely to be fatal. So we ask, “Why the disparity in diseases between male and female?”  And an even bigger question, “Why are we not paying closer attention?”

Statistically, fibromyalgia is a leading female syndrome, and therefore, few studies are done on men.  Men typically do not report their symptoms, do not receive the right emotional support (though women many times don’t either), and suffer gender bias, leaving them undiagnosed and untreated. Females dominate other autoimmune and neurological diseases such as systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), scleroderma, Hashimoto's thyroiditis, chronic fatigue syndrome, migraine, and multiple sclerosis   This by no means suggests that men do not also have any one of these syndromes or diseases.  So I ask,  “Why are men so frequently left out when evaluating fibromyalgia?” 

Since women seem predisposed to neuro-endocrine-immune disorders, their is a theory that hormones play a role. However, ankylosing spondylitis (another autoimmune disease) affects more men than women, so that theory is purely speculative, in my opinion. 

Men are more likely to keep their symptoms to themselves. Many do not understand the co-occurrence of myofascial pain syndrome and that it can cause male related issues, such as impotence, testicular pain, and male pelvic dysfunction, which men are less likely to discuss with their doctor than women, and often overlooked on exam for both men and women.  

Historically men avoid seeking healthcare, because of the long tradition that one should “buck up” and “take their lumps,” which could be a factor in under diagnosis.  Personally, my own husband would be dead had it not been for my insistence that I accompany him to the doctor to report his symptoms, which he wanted to dismiss as GERD and a pulled muscle. 

It is my opinion that more men are affected by fibromyalgia than what the statistics show, because of the factors I just mentioned, and I believe that men are not represented in proportionate numbers in clinical trials.  Like studying women in heart disease separate from men, the same should be true for fibromyalgia.  Women do tend to have a greater affinity toward autoimmune diseases, but believe me, if you are a man and suffer with fibromyalgia, MS, migraine, disordered sleep, restless leg syndrome, or any of the other overlapping neuro-endocrine-immune disorders, it is just as real. 

Gender bias must hit the road, it is immoral, counterproductive, and unethical for men and women. 

In healing and hope, Celeste

All blogs, posts and answers are not meant to replace medical advice.

Want to know more about Celeste’s books?  (click on the title)

Contributing author to Fibromyalgia Insider Secrets: 10 Top Experts, Kindle Ed. 

Tuesday, January 15, 2013

Here comes Peter Cotton Tail: Is he wreaking havoc in your mouth?

What is it?

Xerostomia, impressive word, right? Not!  

Xerostomia (pronounced ‘zero-stow-mia’) is commonly known as chronic dry mouth. When we don’t have enough saliva it affects the health of our mouth, and can cause gum disease, mouth sores, bad breath, cavities and tooth loss. It also affects our ability to enjoy food, can affect our speech and cause difficulty swallowing.  You know you have it when your lips are parched and you can’t peel your tongue off the roof of your mouth.  


Dry mouth, xerostomia, can be caused by the nature of an illness or the side effect of medication/s. People with Sjögren’s, a condition that causes dry mucous membranes (the moisture layer of tissue), and SICCA, a syndrome with the same symptoms without the antibodies of  Sjögren’s,  is significant in causing dry mouth. It is important to note that Sjögren’s/ SICCA has a relationship with a subset of fibromyalgia and chronic fatigue syndrome patients, and certain other autoimmune diseases.  Dry mouth is also often associated with chronic use of certain classes of medications, such as, antihistamines, blood pressure medications, and antidepressants.

Saliva provides lubrication for the mouth protecting it from forming bacteria and other unwanted microorganisms. It helps with moving food debris out of the area.  When we don’t have enough moisture to perform these functions, then we have to help it along. 

What to do

  • Brush your teeth and floss regularly.
  • Stay hydrated.
  • Keep your doctor and dental appointments.
  • Avoid sugar.
  • Suck on sugar free hard candy or chew gum to stimulate saliva production.
  • Use oral probiotics, S. salivarius and B. coagulans, that can protect the mouth, gums, teeth, and throat from the bad bacteria. (Katz, Huffington Post)
  • Avoid smoke.
  • Consume alcohol judiciously.
  • Sip on water frequently.
  • Rinse your mouth frequently.
  • Include foods with high water content in your diet, such as fruits and soups.
  • Avoid foods that tend to absorb saliva, such as crackers.
  • Report any mouth pain, lesions, or a white coated tongue (suggesting yeast, or dehydration), to your doctor right away.

If you are plagued with dry mouth, be sure to let you doctor and dentist know. Your doctor may be able to change your medications, or the time of day you take them.  Your dentist can prescribe mouth washes that help prevent dry mouth, tooth decay and gum disease.

Hop along now Peter Cotton Tail, we know what to do when you have worn out your welcome. Bye, bye. 

In healing and hope, Celeste

If you think there is someone this might help, please share it. Copy and paste the link, 

All blogs, posts and answers are not meant to replace medical advice.

Want to know more about Celeste’s books?  (click on the title)

Contributing author to Fibromyalgia Insider Secrets: 10 Top Experts, Kindle Ed. 

Wednesday, January 9, 2013

KaleidoPain NEWS: Ever Changing Colors of Chronicity, 1-9-13

Have the KaleidoPain News and my blog delivered right to your Inbox by subscribing to the RSS feed.

KaleidoPain NEWS: Ever Changing Colors of Chronicity, containing news for all pain and neuro-endocrine-immune patients, healthcare providers, and caregivers.

“A bird doesn't sing because it has an answer,
it sings because it has a song.”
~ Maya Angelou


Pain sufferers speak RAW

Ten People to Follow on Twitter for Thyroid Information By Mary Shomon


Back exercises in 15 minutes a day by Mayo Clinic.  Nice slide presentation


By David O. Wiebers, neurologist/neuroscientist.

The Do’s and Don’ts of Fibromyalgia Caregiving. Find out what to do -- and not do -- to help a person suffering from fibromyalgia. [I was a collaborator for this article.  Sharecare and Real Age are meeting the needs of the fibromyalgia community. In healing and hope, Celeste]

FEATURING Q&A by Celeste at Sharecare

Milestone – My 300th answer as fibromyalgia expert on Sharecare. How do I handle other people's reactions to my fibromyalgia?”

Don’t have a Sharecare account?  Just copy and paste the question in the ask a question tool bar at


Stopmold cold mom. A great deal of helpful information regarding mold.


There are 100 million Americans in pain. The Pain Alliance to Implement a National Strategy of which I am privileged to be a part, takes on the charges set forth in the IOM report Relieving Pain in America.


Insider Secrets for Treating Fibromyalgia: 10 TopExperts by Glen Depke, Celeste Cooper, Deirdre Rawlings and Jacob Teitelbaum (Dec 1, 2012)Now available in Kindle 

January is thyroid awareness month.  Read my article:

Is your butterfly dead: your thyroid and you?


Rescheduling hydrocodone from II to III
RE: Docket No. FDA–2012–N–1172Impact of Approved Drug Labeling on Chronic Opioid Therapy; Public Hearing;Request for Comments AGENCY: Food and Drug Administration, HHS...Notice by FDA on 12/19/2012 ID: FDA-2012-N-1172-0001

Dr Stephen Grinstead Speaks Out About the War onDrugs Is Now A War on Pain Patients.

Not on Twitter?  Follow my tweets from Celeste Speaks 


When pain and disability is life limiting. The Seven Rules

The Seven Rules:
Rule #1 - Know what programs are available.
Rule #2 - If it isn’t in your medical record, it’s not so.
Rule #3 - Provide evidence of how your symptoms obstruct your daily living, and what alterations you have made to survive. Get your documentation into your medical records.
Rule #4 - Hire an appeal attorney that is familiar with chronic pain and invisible illness.
Rule #5 - Don’t assume anything.  Making the information available to your physician should be welcome and it helps you track your successes and failures too.
Rule #6  - Brainfog? Get a neurocognitive exam.
Rule #7 - Don’t give up.


Fibromyalgia Syndrome (FM)
Chronic Fatigue Immunodysfunction (ME/CFS)
Myofascial Pain Syndrome (MPS/CMP)
Chronic Pelvic Pain
Co-occurring Disorders


The goal of living with any chronic illness is to focus on the living and move the illness to the periphery. This book beautifully collects the wisdom of the author and of the ages as daily exercises to focus on life, growth, and health despite the presence of pain. Best wishes to all who use this book to reclaim life day by day.
- Patricia Geraghty, RNC, MSN, FNP-BC, Sharecare Editorial Advisory Board

A nurse recommended this to me, as I've had FM for 10 years now. I was really helped by Dr Devin Starlynal's "Fibromyalgia Advocate" and seeing her name associated with this book gave me more assurance there was good information here. The authors write first person stories and more fact focused pieces in a combination that keeps it very interesting. Like Dr. Starlynal's books this does not promote a single theory or cure...Read More
A nurse recommended this to me, as I've had FM for 10 years now. I was really helped by Dr Devin Starlynal's "Fibromyalgia Advocate" and seeing her name associated with this book gave me more assurance there was good information here. The authors write first person stories and more fact focused pieces in a combination that keeps it very interesting. Like Dr. Starlynal's books this does not promote a single theory or cure but shows the range of thinking on these disorders. I had not made the connection with CFS & CMP but it certainly bears out in talking with others. This is a very comprehensive and up to the minute book, wish I had it 10 years ago


BROKEN BODY, WOUNDED SPIRIT: Balancing the See Saw of Chronic Pain, FALL Devotions
Day Twenty-three, I strive to keep my words assenting,so they don’t come back to bite me.~Celeste  Topic “You said what?”..........

There are many helpful tools to help you in chapter two of Integrative Therapies…, “Communicating Your Healthcare Needs,” including  relating symptoms & health history, identifying and explaining aggravating and alleviating factors, in-depth explanation of possible coexisting conditions, how to communicate with all healthcare team members, a Summary Exercise, Medication Log, Symptom Inventory Sheet, Anatomical Diagram of Pain, and Health History Log.


Living in the Theater of the Absurd (Kindle Edition)2012 review By Celeste Cooper
Susan McIntyre gives a well written and empowering account of her personal experiences with pain and fibromyalgia, including many faith-full tips for coping. She writes of the vortex and within minutes you are pulled in with her. She speaks to each of us in an amazing and uplifting way. I chuckled in many spots as I thought she was writing a book about me! Honestly, I am not certain if it is aging with fibro or that we share some inner connection. Spell binding, and I mean that literally.

Do you have a special book that has helped you?  Pay it forward by writing a review on Amazon, and send it to me so I can post it in the newsletter.  You can contact me through my website,

POINT TO PONDER    (Inspired by the daily devotions in Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain.)

How can I live an enlightened, aware life?

Paying it forward, in pain, for pain, Celeste, RN, author, pain patient/activist, educator, and fibromyalgia health expert  

Visit my website for more helpful information.
This blog available in RSS feed

*This virtual newsletter is for informational purpose only and is not meant as medical advice.

Sunday, January 6, 2013

Is your butterfly dead: your thyroid and you?

January is thyroid awareness month and I have added an article on my website titled:


 Is Your Butterfly Dead: Your Thyroid and You (click the title)

I hope you will stop by and find out things like:

  • What is the thyroid?
  • Weird but true
  • Hypothyroidism
  • Hyperthyroidism
  • Diseases involving the thyroid
  • Thyroid resistance
  • Blood tests
  • Other tests
  • Treatment

You can leave your comments here. I look forward to hearing from you.

In healing and hope, Celeste

Celeste's Website

Celeste's Website
Click on the picture