Fibro Patients – A Survey for You

Fibro Patients – A Survey for You

By Ed Coghlan

May 12 is Fibromyalgia Awareness Day and the National Pain Report wants to know what your experiences have been in seeking diagnosis and treatment.

Please fill out this survey (click here for survey). We will tabulate the results and report back to you.

Also we would like to know what, if anything, you did on May 12 (or any other day for that matter) to promote awareness of fibromyalgia.

Here’s what the National Fibromyalgia and Chronic Pain Association was doing.

Here’s how the Mayo Clinic describes the malady, which depending on who you believe, affects between 5 and 10-million Americans.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. 

Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.

In her new book on Fibromyalgia, Dr. Ginevra Liptan writes not only for patients, but also for physicians who still, she believes, are widely under-diagnosing the syndrome.

Dr. Liptan, who developed fibromyalgia as a medical student has devoted her practice to understanding it.

One of the reasons the book is easy to read is that she breaks it into four main parts—what she calls The Four R’s of Fibromyalgia Treatment—Rest, Repair, Rebalance and Reduce.

By the way, her book – The Fibro Manual – A Complete Fibromyalgia Treatment Guide for You and Your Doctor is published by Random House. If you read it, let us know what you think.

Dr. Liptan did an interview with National Pain Report, which we are sharing with you again.

NATIONAL PAIN REPORT: “You are a physician who treats fibromyalgia and has fibromyalgia—how would you characterize the state of fibromyalgia treatment today?”

  1. LIPTAN: “Medical treatment of fibromyalgia has made huge progress in the past decade. When I was diagnosed in medical school 15 years ago, many doctors still questioned whether it was a “real” illness. These days, that issue has been put to bed and nearly every doctor these days does believe it is a real illness- however they still don’t know much about how to treat it effectively.”

NATIONAL PAIN REPORT: “We note in your upcoming book at the end of each chapter you provide the reader with things they can talk with his or her doctor about…do you think the physicians are better understanding how to recognize (and treat) fibromyalgia?”

DR. LIPTAN: “Physicians are definitely better able to recognize and diagnose fibromyalgia these days, but really lack any idea how to treat it beyond the 3 FDA-approved medications (Cymbalta, Savella and Lyrica). That is why I included topics for each chapter so patients could discuss new ideas with their doctors. And then I included a health care provider guide at the end of the book that patients can share with their physician as well.”

NATIONAL PAIN REPORT: “Why are women more prone to develop fibromyalgia than men?”

DR. LIPTAN: “The truth is that we don’t really know. It may have to do with differences in how men and women process pain signals in the brain, or may be because women are more likely to experience traumas like sexual assault in key periods of brain development in childhood and adolescence.”

NATIONAL PAIN REPORT: “That’s not to say that men and young people are immune, does it? You’ve said in the past that it tends to be underdiagnosed in men.”

DR. LIPTAN: “Fibromyalgia remains underdiagnosed in men, partly because men are less likely than women to go to the doctors, let alone talk to them about issues like pain or fatigue. It is a very common diagnosis in males who have experienced combat- nearly as common as PTSD. So within the Veterans Affairs and military healthcare system it is becoming a more common and recognized diagnosis, but in the civilian world doctors just don’t think about it when talking with male patients.”

NATIONAL PAIN REPORT:” Not enough restorative sleep, too much stress, not enough exercise, eating the wrong things—all contributors. If there’s one thing more important than the other for folks who are trying to address this?”

DR. LIPTAN: Sleep is by far the most important area, and this is where patients need to work most closely with their physicians. Unfortunately, most doctors- even sleep doctors- do not understand the importance of increasing restorative sleep in fibromyalgia. So patients will need to bring it up themselves, because improving sleep quality is the foundation for all other fibromyalgia treatments.”

To order her book on Amazon, click here.

Follow her on Twitter: @drliptan

Follow the National Pain Report on Twitter @NatPainReport, @edcoghlan

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Authored by: Ed Coghlan

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Linda Shaw

Thank you for this great article. I wanted to add a bit of information my rheumatologist gave me and see if anyone has any input.

– Fibro used to be predominantly in women

-when the diagnostic criteria were changed to put less emphasis on trigger point tenderness, men came up almost equal to women (women may be more tender to this exam technique than men at baseline she said)

-when the criteria changed, it went from a psych diagnosis to neuromuscular diagnosis (men wouldn’t have it if it were psych anyway LOL- so she said)

-it is a disorder of the nerve pathways/sensory perception itself