Monday, January 3, 2011

New Foundation Dedicated to Advocating For People In Pain

I have a great deal to share with all of you, a great deal of catching up to do. My long absence being the result of my determination to return to the stage in spite of every obstacle fibro would throw in my path. But that is for a later posting when I have more time. For now, I just want to let you know about a new foundation... The Foundation For Ethics In Pain Care. You can follow the link here to learn more.

Click Here For Foundation for Ethics in Pain Care

Wishing you a gentle pain free day.

Thursday, October 14, 2010

New Study Finds Yoga Beneficial For The Fibrotastic

I came across this interesting study that was done with yoga and fibromyalgia patients. Unfortunately they chose to leave out all the fibrotastic men from the study and focused only on women, but they had some interesting outcomes which I thought worth sharing here. Click Here to Read More

Monday, September 6, 2010

Spread Pain Awareness

September is Pain Awareness Month. Access to health care and pain management is woefully inadequate, yet chronic pain effects more people than those living with diabetes, cancer, and heart disease combined. Most of us hide our illness from you, in silence, shame, fear of being discovered. Do you tell people about your pain or do you hide it? Let's work to spread awareness this month. I am coming out of the closet, how about you?
Click here for article about pain awareness month.

Monday, August 23, 2010

More Information About the Virtual March for Pain Care

My Dear Fibrotastic People-and the Wonderful People Who Love Us -- I Am Very Excited About This and Hope You Will Become Involved - Please Sign Up to Take Part in This Virtual March Today. Do It for Your Loved Ones, Do It for Yourself, Do It Because it Needs to be Done. Thank You!

A Virtual March on Washington and the 10,000 Voices Campaign to Improve Pain Management!

Uniting Our Voices, Conquering Pain Together

September Pain Awareness Month (PAM) provides an opportunity for organizations and individuals to come together to raise awareness in communities across the country to bring positive change to the management of pain.

As part of PAM, join us for APF’s VIRTUAL MARCH on Washington – an online event to unite, empower and rally those who care about people living with pain and be part of making a difference in pain policy and practice.

Individuals are invited to
Organizations and groups are invited to
Help us transform pain policy into improved pain management for all!

2010 marked an enormous victory for pain management. Provisions in the National Pain Care Policy Act passed with the Health Care Reform bill after 7 years in the making! We’ve garnered awareness and momentum around pain and the challenges it creates for millions of people but there is still so much work to do. The majority of people with pain still do not receive the pain care they deserve. JOIN US and make the difference!

For more information about the Virtual March
on Washington,
the 10,000 Voices Campaign
and how YOU can get involved,
PLUS the Pain Awareness Month
Advocacy Toolkit,

People in pain have a right to timely,
effective pain care!

The American Pain Foundation Action Network works everyday to transform pain care in America. We need your help! Join us in our efforts to improve pain care today. Learn more about the Action Network and how you can make a difference to millions of Americans living with pain.

Ways to Get Involved:
TAKE ACTION NOW – to improve pain policy.
Key Messages for Pain Care Advocacy
Locate and contact your state leader using theLeader Directory
Learn more about becoming a leader
Visit our Get Involved page to find more ways to become a part of the movement
Join the Action Network!

Join the APF Action Network!

Using this site

This site is Action Central for the Action Network’s activities, calls to action, tools to get involved and strategies for spreading the word. Use our Action Toolkit to see how you can get involved and access templates to help you in your efforts. Connect with others working to improve pain management on the Connect page and visit our Events page to find or post an activity that is happening in your area. If you need help finding pain information or resources e-mail

With your help we can build a movement that will change the face of pain care in the United States.
Join us now!

The Bottom Line: Americans have a right to timely, effective pain management.

Sunday, August 22, 2010

Virtual March to Improve Pain Management

I hope that you will all join the American Pain Foundation's Virtual March on Washington to Improve Pain Management. Even those of us who are fibrotastic and unable to leave our beds can join this march. Invite others to join with you. Too many suffer day in and day out with no end in sight. Don't suffer in silence, make your voice heard.
Click Here to Visit the American Pain Foundation Action Page

Thursday, July 29, 2010

Sick Humor

I really don't like to, but I must admit that it is not easy to get through days like the past few, (in full fibro-flaming-flare-up) with my sense of humor intact. I am very good at hiding my illness, on most days. Like most people with invisible illness, I do my best to appear normal. I use large reserves of strength to get out of bed and ready to face the day. Getting out of the bed after not sleeping all night (for the 5th year in a row) is a huge expenditure of energy, getting my legs to cooperate enough to walk to the bathroom is another. The story is the same for most of us - we must get up and eat, if we don't we can't take our medications without getting ill, if we don't take our medications on time our pain will be doubled or quadrupled for hours. Those of you who make this fantastic journey each day already know of what I speak. If you lose your sense of humor by 6:00am, your chances of making it through the day with any shred of your sanity left is pretty small. Not to mention the impact it has on family and friends.

I am ever thankful for people who make me laugh, like my sister, whose fibro is much more crippling than mine, and who I have spent countless hours laughing with via phone and email and text message. She and I can improv for hours on the life fibrotastic, and it is possible that if there is ever such a thing as a lay-down comic - my sister will be the star act.
I must also thank the many people who write and blog, who I have never met, who I do not know, but who share membership in this not so glamorous club. You remind us that we are not alone.
Of late, I have been enjoying a site called - - and which of us has not heard that a million times? ;] I always enjoy collecting 'sick humor' - and the top ten lists of what not to say to people with fibro or any other chronic, invisible illness, are among some of my favorite to collect. So if you find any you like or have any you would like to add, please send them my way. In the meantime, Here is a link to one I found posted on - I hope you enjoy it.
Wishing you gentle hugs and feel good days.
Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Saturday, June 12, 2010

Pain Advocacy

As fibrotastic people, we will all find ourselves needing to advocate for better pain management and pain awareness. Here is a link for a website to help you or your loved ones to begin advocating for better treatment of your pain - In the Face of Pain

If you are a person living with fibromyalgia, then you are likely a person who is living with relentless chronic pain. Your pain levels may fluctuate throughout the day, week or month, but chances are you are rarely without your constant companion, pain. It is not true that misery loves company, so knowing that you are just one of some 76 million people in the United States who is in pain today does not really help you feel any better.

The majority of chronic pain sufferers encounter a wall of indifference from the medical profession about their pain. It is somewhere between extremely difficult to impossible to find a physician who is willing to work with you to find a treatment for your pain. Most of us spend nearly 5 years seeking a diagnosis and almost as long seeing a compassionate physician who is not afraid to treat our pain.

How many of you have been told by your doctor that they are unable to prescribe a pain medication because you will become addicted? I once tried to explain to my rheumatologist the difference between addiction and dependance - but I think I only made him angy by presuming I knew something that he did not. Since he had already decided I was a probably an addict and psychologically disturbed, it was easy for him to simply dismiss me in the end. He kept mentioning Michael Jackson as the reason he would not work with me on pain relief.

I have even been denied pain medication after a surgical procedure. I really liked my surgeon. He came highly reccomended. We had tried non-surgical solutions to my problem first. I had explained my fibromyalgia to him on several occasions. I voiced my concerns about post operative pain, in light of my heightened pain response I wanted to be sure he knew everything about my medical condition. He continued to reassure me that my surgery would involve minimal post-operative pain. When I awoke in the recovery room I was in so much pain I could not speak, I could only cry in agony. The nurse immediatly went looking for pain medication for me. My agony was obvious. My husband sat with me and watched as I could not even speak, I could only sob in agonizing pain. My recovery took weeks longer than a 'normal' patient. During one phase of recovery, a cast was removed from my arm. I called the doctor and begged him to put it back on, because everytime I moved, the pain was so searing it would literally bring me to my knees. Again I explained to my surgeon that I needed pain medication to help me endure what was happening to me. I was told to take an ibuprofen. I don't think my doctor believed my pain. He kept saying I shouldn't have it. It was a simple procedure. He had done hundreds of them. People recover quickly. The fact that I DID have pain - that I WAS suffering - did not matter in the face of what he knew. In his experience, the pain associated with my procedure was minimal and could be managed with an over the counter pain reliever. End of discussion. So I suffered for weeks. I had consented to surgery because months of pain, physical therapy and cortisone injections had not eradicated a chronic painful condition in my wrist. My doctor denied me appropriate post operative pain management because in his experience, my pain did not exist.

Do we need more pain advocacy and education? I think we do. In The Face of Pain