Jan Chambers- President of the National Fibromyalgia & Chronic Pain Association talks to me about Pfizer’s new Functioning with Fibro Survey!
The Functioning with Fibro Survey provides some very helpful data, especially if you have been diagnosed and live with fibromyalgia, or know someone who does!
Here is some general information about Fibromyalgia and the Functioning with Fibro survey before we hear from NFMCAP president, Jan Chambers.
• Fibromyalgia is “a condition that affects more than 5 million Americans ~ Mostly women”!
• Symptoms are “chronic widespread pain and tenderness that lasts for three months or more”.
• “Though the actual cause of fibromyalgia is not known, experts suspect that it is a result of over active nerves. Research has revealed that fibromyalgia may be the result of abnormalities in how an individual’s body processes and responds to pain, specifically an elevated sensitivity to stimuli that are not as a rule painful.”
The Functioning with Fibro Survey:
• In August of 2013, 1,228 U.S. adults over the age of 18 and diagnosed with Fibromyalgia were invited by an email to participate in an online survey.
• Pfizer, Inc. funded and developed the Functioning with Fibro Survey.
• Teaming together to carry out the survey was the National Fibromyalgia & Chronic Pain Association (NFMCPA), and the American Association of Nurse Practitioners (AANP).
•Angela Golden DNP, FNP-C, FAANP and president of AANP stated, “The Functioning with Fibro Survey reveals an opportunity of NP’s to play a more critical role in discussions with fibromyalgia patients by providing them with the necessary education and resources to effectively manage their fibromyalgia pain in everyday life.”
My interview with Jan Chambers:
1. VICKI: Jan, it’s so great to be able to speak with you about Pfizer’s new “Functioning with Fibro Survey”. Pain sure seems to rank at the top of the list in this survey!!
JAN: Yes, 80% of fibromyalgia patients say pain is the #1 symptom that they deal with on a daily basis that affects their lives. Knowing that, and sitting in my position as the President of the National Fibromyalgia & Chronic Pain Association, I see the impact, I hear the impact, and when we Facebook and message out, then read all of the comments that come back, we see how the people are suffering. We want to be able to help them. I appreciate that Pfizer developed this survey so we know how many people are hesitant to arrange social engagements , and things like that.
2. VICKI: When the “Functioning with Fibro Survey”was done, what specific data were you looking to find?
JAN: There were two aims that concerned me. One was to find out how the fibromyalgia patients engaged with their health care providers to understand and to manage their pain, and the second aim was to understand and evaluate what exactly was the impact that the chronic widespread pain had on the many different aspects of their daily lives.
3. VICKI: I imagine that would be very helpful information. From what I understand, Fibromyalgia is at this time not curable but can be managed, and each patient is somewhat individual and has different needs.
JAN: Yes, everyone even explains their pain differently! Understanding that there are different ways that we need to communicate with our health care providers and to work with them as partners, we need to actually develop that language to be able to express what we’re dealing with on a daily basis, express what’s important to us in our daily lives, and do what we want to get back to doing… because….what may be important to me might not be important to someone else.
For instance, I have two darling little granddaughters. I’m known as the grandma that puts two pillows on the floor and gets down on the floor and plays with them, because it’s hard for me to carry them. I need to be able to play with them, interact in their lives, and be their cheerleader from the side and say “learn new things”!
4. VICKI: What a wonderful connection you have with your granddaughters, Jan. They certainly must bring a lot of happiness and a sense of wellbeing into your life.
Lets talk a bit about the nurse practitioners. It seems that they play a very important part in the lives of the fibromyalgia patients. Once a person is diagnosed with fibromyalgia is a nurse practitioner the professional you would most likely see on a regular basis for support, advice, or other assistance?
JAN: The nurse practitioners are one of our frontline health care providers in the rural community. We rely on them to be able to help the patient to diagnose, be able to set health goals, and manage their symptoms. There’s no cure for fibromyalgia at this time, but we do know that when people are proactive that they feel better and are able to reduce their symptoms. From diagnosis to a couple of years down the road, people with fibromyalgia are doing better if they have education understand the illness and how it overlaps with other conditions. The pro-existing conditions do play an important role in fibromyalgia. The health care providers, the nurse practitioners, particularly in this case, are helpful in having that “listening ear” and are able to spend a little more time listening and giving feedback to the patients.
Sometimes we have a little bit of the”isolation factor” going on with fibromyalgia, and forget that we aren’t the only ones who are dealing with such an overwhelming symptom load! Having that “listening ear” with the nurse practitioners is one of the advantages! I know that I’ve listened to Dr. Golden express that the satisfaction that the patients who have the nurse practitioners versus the health care providers, on the whole, is rated quite highly!
I encourage people to feel very comfortable to rely on all of this, and all the family care practice docs. The rheumatologists are the ones who are the specialists and basically diagnose fibromyalgia, but there are not enough rheumatologists to help people manage the fibromyalgia.
There has been a big movement with the frontline practitioners. I was involved in a continuing medical education a few weeks ago to develop the partnership idea with the health care providers on the front line, including nurse practitioners, family care doctors, and internists so they would be able to work with the patients much closer and understand that identifying what’s important to them is what those appointments should be about!
5. VICKI: Is there a medication, nutritional or dietary support that is available for help with fibromyalgia ?
JAN: Fibromyalgia needs a multi-disciplinary approach. That includes working with your health care providers to determine which medications are appropriate. It also includes determining if a person needs nutritional guidance, as well as the behavioral health and mental health in this multi-disciplinary strategy. We know that everyone can use “neutrals” to handle social situations, especially if those social situations are stressful! We’re aware that that’s one of the areas that people with fibromyalgia need to look at, and learn how to minimize the stress on their lives.
It’s sometimes a little bit like the “princess and the pea”. You’re over sensitized to a lot of things such as lights, sounds, and odors. Then you add to that other concerns, for instance, dealing with younger children. (I worry so much about our young moms) If you add all of that together, it can be overwhelming to the person with their fibromyalgia since their central nervous system is so involved with responding to the pain signals. Reducing all of that stress and having the multi-disciplanery approach with a physician or health care provider is crucial.
6. VICKI: We have a large diverse audience of readers. This information has been so informative and enlightening. What would you suggest a person do if they are concerned that they may be dealing with fibromyalgia?
JAN: The National Fibromyalgia & Chronic Pain Association advocates for a person who suspects they may have fibromyalgia to go to their health care provider. We help educate physicians so they are able to diagnose fibromyalgia. It should be fairly straight forward for a person to receive a diagnosis of fibromyalgia.
You know… there is a terrific new Facebook page called “Fibro Center”, and that is where the information is going to be coming in from Pfizer and include a lot of the facts.
The people who believe they may have fibromyalgia need to know that an early diagnosis matters! The education, learning what you should do to start focusing on to reduce the severity of the symptoms is important. I’m eight years out from having a complete blowup from the fibromyalgia symptoms. I understood about it a year and a half into it, that I needed to start setting health goals and figure out how to get my life back….. because I wasn’t sure if I was going to have a life! So going to your health care provider, asking for help, and being very honest is important because they can’t work with unknowns. They can only work with what we tell them!
Using the informal care networks to be able to gain a comfort level so you’re not being over reactive to situations, but able to express yourself properly. Even though you go in and have a whole page of symptoms that you want to talk about, you need to rank those, and recognize from the position of our health care provider that you need to focus on the things that are important to you. If there is a an overriding health concern they are going to focus on that first, which is appropriate! But then, they don’t know what priority you may have regarding other events. For instance, with somebody who is working, being able to go throughout the day and function well in that work setting is going to be a higher priority to that person than being able to go on a vacation, for instance, or be able to play with their grandkids.
7.VICKI: Were you pleased with Pfizer’s study that just came out about “Functioning with Fibro”?
JAN: Oh YES! I’ve never seen data to this extent that has quantified how the impact of chronic pain is affecting people’s daily lives. You think of the vacuuming, carrying the laundry, etc. ! I’m very fortunate, as my husband does a lot of that for me. He carries the laundry up and down the stairs so that helps me to do some of the other things that are important.
VICKI: Many thanks to Jan Chambers for her insightful commentary regarding the Functioning with Fibro Survey, managing chronic pain , and adapting lifestyle changes in dealing with fibromyalgia that will as Jan says, “make a difference”.
The PFIZER, FUNCTIONING WITH FIBRO – INFOGRAPHIC:
This is a wonderful source to reference for key information included in this article!
(click on the image to enlarge each picture)
For additional online information visit:
• Resources and more about the Functioning with Fibro Survey:
• Pfizer, Inc.
• National Fibromyalgia & Chronic Pain Association (NFMPCA)
• American Association of Nurse Practitioners (AANP):
(Quotes or Paraphrased information regarding this article obtained from a provided PR-Fact Sheet,
1. Burckhardt CS, Goldenberg D, Crofford L, et al. Guideline for the Management of Fibromyalgia Syndrome Pain in Adults and Children. APS Clinical Practice Guidelines Series, No.4. Glenview, Ill: American Pain Society; 2005.
2. Arnold, L, Clauw, D, McCarberg, B. Improving the Recognition and Diagnosis of Fibromyalgia. Mayo Clin Proc. 2011; 86(5):457-464.
3. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Questions and Answers about Fibromyalgia. Available at: http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp. Accessed April 10, 2012.
4. Arnold, L, Hudson, J, Hess, E, Ware, A, Fritz, D, Auchenbach, M, Starck, L, Keck, P. Family study of fibromyalgia. Arthritis & Rheumatism. 2004 March;50(3):944-952.
5. The Fibrocollaborative Roadmap for Change. 2009. Available at: http://www.npwh.org/files/public/FibroCollaborative%20Roadmap%20(2).pdf
6. Mayo Clinic. Fibromyalgia: Risk Factors. Available at: http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=risk-factors. Accessed April 10, 2012.
7. Synovate. [data]. Chronic Pain Consumer Survey. March 2011.
8. Henriksson KG. Fibromyalgia — from syndrome to disease. Overview of pathogenetic mechanisms. J Rehabil Med. 2003;41(suppl):89-94.
9. Wolfe, F, Ross, K, Anderson, J, Russell, J, Hebert, L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis & Rheumatism. 1995 Jan;38:19-28.
10. ACPA. Fibromyalgia. Available at: www.theacpa.org/conditionDetail.aspx?id=1. Accessed April 10, 2012.
11. Wolfe, F, Smythe, H, Yunus, M, et al. The american college of rheumatology 1990 criteria for the classification of fibromyalgia. Arthritis and Rheumatism. 1990 Feb;33(2):160-172.
12. Wolfe, F, Clauw, D, Fitzcharles, MA, et al. The american college of rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care & Research. 2010 May;62(5):600-610.
13. Pfizer Market Research, Data on File. 2010.
14. Goldenberg, D, Burckhardt, C, Crofford, L. Management of fibromyalgia syndrome. Journal of the American Medical Association. 2004;292(19):2388-2395.
15. Inanici F, Yunus MB. History of fibromyalgia: past to present. Curr Pain Headach Rep. 2004 Oct;8(5):369-78.
16. Fibrocenter. History of fibromyalgia. Available at: http://fibrocenter.com/fibromyalgia-disease.aspx. Accessed April 10, 2012.
17. American Pain Foundation. About APF. Available at: http://www.painfoundation.org/about/. Accessed April 10, 2012.
18. National Fibromyalgia Association. About the national fibromyalgia association. Available at: http://fmaware.org/site/PageServerc91e.html?pagename=about_nfa. Accessed April 10, 2012.
19. ACPA. September is Pain Awareness Month. Available at: www.theacpa.org/69/Septemberispainawarenessmonth.aspx. Accessed April 10, 2012.
20. Amazon. The arthritis foundation’s guide to good living with fibromyalgia. Available at: http://www.amazon.com/Arthritis-Foundations-Guide-Living-Fibromyalgia/dp/0912423269. Accessed April 10, 2012.
21. Food and Drug Administration. FDA approves first drug for treating fibromyalgia. Available at: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/2007/ucm108936.htm. Accessed April 10, 2012.
22. Lilly. Corporate Press Release. Available at: http://newsroom.lilly.com/releasedetail.cfm?releaseid=316740. Accessed April 17, 2012.
23. Forest Laboratories / Cypress Bioscience. Corporate Press Release. Available at: http://news.frx.com/press-release/product-news. Accessed April 23, 2012.
24. HealthyWomen. Women and men face off: Who can stand the pain?Available at: http://www.healthywomen.org/content/press-release/women-and-men-face-who-can-stand-pain-0?context=press-release/2009&context_title=press%20releases&context_description. Accessed April 11, 2012.
25. NFMCPA. National Fibromyalgia & Chronic Pain Association Releases Inaugural Edition of Fibromyalgia & Chronic Pain LIFE(TM) Magazine. Available at: http://www.prweb.com/releases/2011/9/prweb8762005.htm. Accessed April 11, 2012.
26. Pfizer Market Research, Data on File. 2011.
27. Eli Lilly. Know Fibro Initiative Commemorates National Pain Awareness Month. Available at: http://newsroom.lilly.com/releasedetail.cfm?releaseid=407413. Accessed April 18, 2012.
28. HealthyWomen. Delay in Diagnosis Significantly Impacts Lives of Patients with Fibromyalgia, New Survey Reports. Available at: http://www.healthywomen.org/content/press-release/delay-diagnosis-significantly-impacts-lives-patients-fibromyalgia-new-survey-r. Accessed April 18, 2012.
and…My interview with Jan Chambers.)