One of the first things I tell new members of FibroHaven support group – above everything – we need to learn to be our own best health advocates. Fibromyalgia is a condition with no known cure. There is not, and likely never will be, a single approach to treat and manage the condition. Most doctors do their best within their limited resources in identifying and trying to treat each of the separate symptoms of the condition, but few are masters of treating the whole.

In their desire to bring you relief, you may leave with one prescription for pain, another for sleep, and still another for IBS. And when those fail to bring the desired results, or when the side effects are worse than the condition they are intended to manage, you start all over with a new prescription, and new hope that this time it will be the answer. And the cycle continues. Even for those whose symptoms are improved, and their days are made more manageable, the condition remains.

So our anger and frustration builds. We see doctor after doctor hoping this one can help – that one will know, and when they can’t, and when they don’t, we blame. We blame our doctors for not understanding, and we blame the pills for not working. We dwell in a state of feeling hopeless and misunderstood. We lose faith that it can ever get better. We become defeated, and in doing so our symptoms grow in strength and severity because we have relinquished our control. Fibromyalgia wins. We lose.

Can you see how depleting this continuous cycle of hope and disappointment can be?

It is this disappointment and incredible letdown that I believe can be alleviated if we reevaluate our expectations of the fibromyalgia doctor-patient relationship. Despite all efforts, our doctors are limited in the relief they can provide. If we understand this going in, and set reasonable expectations for what we hope to achieve under their care, we free ourselves to possibility rather than despair.

First, we must change our expectations of what a doctor can do.

A good doctor will partner with you and guide you to make the changes necessary to improve, but even the most fibromyalgia literate doctor cannot make this go away. Know this going in and you are much more likely to have a positive experience and partnership with the right doctor.

I did not start healing until I took control of my health out of a doctors hands. Once I understood they do their best, but their best is limited when it comes to fibromyalgia, I began to make the changes I needed to begin healing. Because I chose to manage my symptoms without the use of pharmaceuticals, my need and expectations of my doctor were reduce considerably.

I incorporated alternative medicine, finding tremendous relief from a holistic chiropractor. His treatment was unconventional in that he rarely adjusted me, but used laser therapy and also addressed my nutrition, introducing me to a gluten-free diet. He also worked to eliminate several infections I had including heavy metal toxicity.

Once my chiropractor worked with me to consider how nutrition played a role in how I was feeling (something, remarkably, I had never considered), I began to examine all areas of my life to see what changes I could make to begin living well with fibromyalgia.

I incorporated yoga to get moving again. I began meditating to help me find balance and peace amidst all the chaos of chronic illness. I became more active with my support group to connect with people who validate my feelings and experiences. And I began to improve. Slowly, gradually, I improved. But more beneficial than any physical improvement was my emotional improvement. I found hope.

By making these changes I took control of my health. A loss of control is something we all struggle with. When we give that control to our doctors, and they fail to make acceptable improvement in our lives, where does that control go? Do we keep giving it to others who, despite their intentions, are limited in their ability to help, or do we take it back. I say take it back.

Walk into your doctors office and let them know, I know you cannot cure me, but let’s see what we can accomplish together to make me better. Better than anyone, you can – and should – determine what is best for you.

Researchers used functional magnetic resonance imaging (fMRI) on 36 female subjects – 18 fibromyalgia patients and 18 healthy subjects – to obtain their newly published results:

Our results clearly show that individuals with FM have greater connectivity between multiple brain networks and the insular cortex, which is a brain region previously linked with evoked pain processing and hyperexcitability in FM,” said Dr. Napadow. The research team found that patients with FM had greater intrinsic connectivity within the right EAN, and between the DMN and the insular cortex — a brain region linked to evoked pain processing. “In patients with FM, our findings strongly implicate the insular cortex as being a key node in the elevated intrinsic connectivity,” added Dr. Napadow. “Patients demonstrated greater DMN connectivity to the left anterior, middle, and posterior insula.” In the right EAN, FM patients demonstrated greater intra-network connectivity within the right intraparietal sulcus (iPS). Researchers found no differences between the FM and healthy control groups for the left EAN or the MVN.

Essentially what that means to us is that there is a new study demonstrating a diagnostic difference in the brains of people with fibromyalgia and how we process pain.

This study will need to be duplicated and reduplicated before we see any big changes in the diagnosis and treatment of fibromyalgia, but it is good progress. Not only does it add validity to fibromyalgia, but it could lead to a decisive diagnostic test for the diagnosis of fibromyalgia. This has been one of the greatest barriers we have faced in the acceptance and treatment of fibromyalgia.

Story Source:

Wiley-Blackwell. “Resting Brain Activity Associated With Spontaneous Fibromyalgia Pain.” ScienceDaily 30 July 2010. 1 August 2010

I intended to write this follow-up post on my experience with Dr. Whitcomb and his Neurologic Relief Centers Technique last Monday, but have been sidelined by a bad flare-up. Yes, I do attribute my flare to the workshop and testing technique, but even so, I intend to give you a fair account of the workshop, although as with everything on my blog, it will be full of my opinions. It may be a lot to follow, so I hope I have managed to present a readable review.

The logistics of the day went like this:

I was initially invited to the workshop by a local acupuncturist who I will call “Dr. J.” The workshop began at 1PM on Friday, July 24. The local acupuncturist as well as several other local chiropractors actually paid for a training session with Whitcomb. They spent all of Thursday and Friday morning training to learn his technique. Then at 1PM on Friday, myself and the other patients whom each practitioner invited arrived for a lecture by Whitcomb. After the hour long presentation, we broke off with the practitioner who invited us to be tested to see if the technique would benefit us.

So What is This Technique?

The technique involves several minutes of firm pressure to either the anterior or posterior neck trigger points. The pressure is intended to release the tension on the nerves that travel through the meninges, and relive the pain and symptoms this tension causes. Whitcomb attributes most symptoms of FM to this compression. His name for this is meningeal compression, which he uses interchangeably with Fibromyalgia.

I brought three of my support group members with me. As you can imagine, given my impression of Paul Whitcomb and his clinic, I approached this event with a healthy amount of skepticism. Adding to my skepticism was the information one of my resourceful members shared with me about Whitcomb. He is still under investigation by the California Board of Chiropractic Examiners. There is still a possibility that he may lose his license for charges of administering “excessive treatment” and making “sensational statements which are intended to deceive the public.” He has recently closed his practice in South Lake Tahoe and is traveling nationwide to teach his technique. The reason he gave during the presentation for this move is to eliminate the need for patients to travel to him.

Whitcomb’s Presentation

The presentation Whitcomb gave was full of dramatizations: “Fibromyalgia patients are closest to prisoners of war.” “The Fibromyalgia patients who came to my clinic did not want to continue living.” “Eighteen percent of Fibromyalgia patients commit suicide.” I am really curious to know where he got that number, but unfortunately he did not allow for Q & A. He never once described Fibromyalgia patients as type A, as givers, or as overachievers, which in my experience is closer to the truth. Instead he painted a very bleak and desperate picture of us. Most of his claims were dramatic and over-the-top. He did not share anything about FM that I did not already know, but he did supply us with many statistics about his practice and the tremendous results he gets; such as 85% of his patients remain symptom free, only 6% lost the benefit of his correction and treatment after leaving his clinic. It makes me wonder why he would choose to close up shop.

As we moved on to the testing part of the workshop, we were all required to sign a waiver agreeing to let our test be recorded on video and used at their discretion. I refused, as did the other members of my group. I attended this workshop to research and share as much information as I could about Whitcomb’s technique. I would not agree to have my image shown in support of it and without my knowledge. Dr. J expressed our concern and they agreed to let him test us without being filmed.

I think because we were not being filmed, Whitcomb basically left Dr. J on his own, while paying closer attention to the chiropractors he trained and their patients who were being filmed. Also, Whitcomb unfairly sold Dr. J on training with him. He told Dr. J that “the test is the technique,” but then during the presentation he said just the opposite, because the chiros learning the technique also learned a particular adjustment that an acupuncturist like Dr. J is not legally qualified to perform. When I questioned Dr. J about this he said, “Yeah, I guess he kind of fooled me there.” So the “technique” that Dr. J paid to learn and implement into his practice is not complete. I really feel like Whitcomb snowballed Dr. J and any other non-chiro who paid to learn his technique.

And Now I Share Why I Have Been in a Flare

My first instinct was to not be tested, and I wish I had followed it. Instead I sat and watched many patients receive the technique and seemingly have instant improvements. One older gentleman with Parkinson’s had a noticeable reduction in his tremors. Another man was able to lift his arm above his head for the first time in months. I should note that we were not all fibromyalgia patients in the room, although the presentation was geared specifically to FM. After observing for some time, I was just too curious to opt out, so I hopped up on the table and let Dr. J proceed. After a short palpation he concluded I was sorest and tightest at the trigger points on the side of my neck below my ears. I concurred with this assessment.

He used metal rods with soft ends to place steady, firm pressure on my neck for five minutes. It did not take long for me to begin to feel nauseous. I tried to breath through it. Dr. J frequently check with me to see if I had a reduction in pain. I had rated my pain a 6 on the 1-10 scale, with 10 being worst. That day my neck, head, shoulders, upper back and hips were painful. I did not feel any change as I laid there. He asked me to focus on my hips. Laying still I felt no difference, but when I moved my hips, I eventually felt a reduction in pain. After the test, upon standing, my right hip was free from pain, and my left was improved. There was no improvement to my neck, head, shoulders or upper back.

I remained nauseous for sometime after the test. I had driven my members, and did not feel well enough to drive right away, so it gave us an opportunity to stay and talk about the workshop. The test had zero effect on two of my members, and two of us had a slight decrease in our symptoms. For one member the pressure was too painful to bear. Her pain level had been very low to start the day, and after her reaction to the test, Whitcomb remarked he wasn’t sure why she was even being tested if she had no pain. He told the second member who did not experience any relief that she was just being difficult. When I remarked to him that I did not experience any relief in my upper body he said I just needed to have the test performed longer. We all felt underwhelmed by the experience. It did nothing to change my opinion of him that his care for FM patients is motivated most heavily by his bottom line.

Conclusion

The proposed follow-up with Dr. J was to involve an initial consultation, and then three consecutive days of treatment, which would require three visits each day. After the three days of visits he would reevaluate and propose further treatment. It is expected to take weeks or months for complete healing, and then there is likely to be maintenance to assure the meningeal release holds. Given that I have been in a flare since receiving the test at the workshop, and that the improvement I felt in my hips lasted only an hour or two, I called Dr. J and told him I was not interested in pursuing this treatment. He then told me hed decided not to implement the technique into his practice, and that he too was underwhelmed by the experience. I have to say I think he made a very wise decision.

So there you have my experience and my opinion on the matter. I feel like a little guinea pig, but I am happy to have had this experience to share. When Whitcomb had his Web site up, there were a lot of testimonials of people who swear by his technique. One of my members who attended the workshop has personally spoken with several of his former patients who claim to be symptoms free. She was considering attending his clinic and did a tremendous amount of research. She was the most hopeful of us last Friday that his technique would benefit her, but unfortunately she was one of the two it did not.

If Whitcomb comes to your community to teach his technique, I cannot recommend that you attend his workshop, but as we all know, what works for one will not for the other. Even after this particularly bad flare, I still plan to keep an open mind about treatment options available and useful to us. But I most certainly will not be having my meninges released anytime soon!

NOTE: On Tuesday October 27, FibroHaven was moved from a WordPress domain to its own URL. In doing so the comments of each and every post have been affected. They are no longer chronological or nested (if they were a direct reply to a previous comment). It happened on each post, but because this particular post has been so active it is especially troublesome to try and follow the comments logically. I apologize for this confusion and we are trying to fix it, but it appears it may not be possible.

I can assure you no censoring or editing of comments has occurred. If you are interested and brave enough, feel free to read the comments and try to piece them together. I do warn you against taking things out of context as that has already happened. To avoid any more confusion, I am turning off comments on this post until the issue is resolved. If you have something you absolutely must say in response to this, feel free to email me at fibrohaven@gmail.com.

Cheers,

Dannette

10/28/09

Fibromyalgia is a Puzzle!

Do you remember the press release I shared with you about Dr. Sarkozi and his new book The Missing Pieces of the Fibromyalgia Puzzle? Well he is the guest speaker at my support group meeting tonight. I am very pleased to have been able to schedule him.

Dr. Sarkozi is a rheumatologist specializing in the treatment of Fibromyalgia. His technique is a blend of traditional and complimentary treatment, which intends to promote effective self-managed wellness. I am looking forward to his presentation. I personally believe very strongly that our best health will not come from Western medicine alone, but in combination with the many alternative and complimentary treatments out there. You can be sure I will share with you the details of his presentation and my impression of his book.

Not Interested!

Interestingly, I have a few members in my group who are completely uninterested in hearing his presentation. To them it is just one more person claiming they have the answer. There are so many claims out there of “the” cure and “the” answer, which turn out not to be the answer at all – just a way for unscrupulous people to line their pockets off the desperation and determination of some very frustrated chronically ill people. I believe that every possibility needs to be explored and considered though, because what if it just happens to be even a part of “the” answers we are all so diligently searching for.

Free Your Mind and Your Meninges

I try very hard to keep an open mind. So hard in fact, on Friday I am going to a presentation for a new technique based on the teachings of one Dr. Whitcomb. You may remember I was none too pleased with this controversial chiropractor’s claims of a “cure” for Fibromyalgia. If you need a refresher you can read my rant here and here, but I warn you – I was in a BAD MOOD! (I just read back over both posts for the first time, and am shocked actually at the frustration and desperation behind my writing. I am just realizing that in the months that have passed, I have grown a lot through this blog, and am currently much more at peace and open-minded.)

The workshop I am going to on Friday is based on the belief that Fibromyalgia symptoms are caused by a build up of tension at the base of our skulls that causes irritation to the nerves. The build up can be caused by physical or emotional traumas (stress). The technique being taught in the workshop releases the tension in the meninges, thus releasing the irritation to the nerves.

What do you think? Does this sound like it could possibly be beneficial in the treatment of Fibromyalgia? I’m not sure either, and that is exactly why I owe it to myself, to my support group, and to everyone who reads this blog to check it out. Not sure if I am going to participate in the free demo, but I will certainly be taking notes. And you can be sure I will be reporting back on it as well.

I guess I can just say that she is someone I reached out to individually because she was interested in getting involved in something I am doing and reaping great health benefits from, and now the whole thing has blown up in my face. I am just stunned at how my support and good intentions are now being twisted into such ugliness. It goes back to The Law of Detatchment and the lesson I learned there – “Today I will commit myself to detachment. I will allow myself and those around me the freedom to be as they are. I will not ridgidly impose my idea of how things should be. I will not force solutions on problems, thereby creating new problems. I will participate in everything with detached involvement.”

Basically what it all boils down to is I tried to help someone before she was ready to face or accept any changes that would be required of her to take control of her health. She is not ready, and I am perfectly okay with that. I did not and do not judge her, I just let her know that the opportunity is still available to her and that I would gladly go with her (and I am just talking about going to a holistic chiropractor, nothing too scary) to help alleviate her anxiety.

Now I am being accused of not showing her understanding or compassion and of pushing her away. Really the email blind-sided me and blew me away! And this was my favorite line – “Just remember I and many others have FMS and cannot predict how we will feel on certain days.” Okay, really, because I was not aware of that! Seriously, I guess I am a little mad. Now I am pondering how to respond to her, realizing full well that she possibly could read this post before I reply to her email. I am mad and offended. I did miss a call from her one day, and because I did I gave her my private cell number for her to reach me and even that offended her. I am starting to think I just cannot win with her.

But then what does that mean for her future with the support group? She has really enjoyed and benefited from each meeting she has attended and I would hate for her to lose that over a misunderstanding, but I am at a loss of how to salvage this relationship. The last email I sent her was so positive and encouraging and yet she still thinks I am pushing her away. I get the feeling she is projecting a lot of personal stuff onto me, and I am not sure I can reason with her. I am not sure I have the energy to reason with her, because remember, I have Fibromyalgia “and cannot predict how I will feel on certain days.”

I have had members join and leave the group because it was not a good fit for them, and I am fine with that. I have never had issues with a participating member though, so I am at a loss. I know I cannot be all things to all people and still honor my own health, but my every intention toward her was pure, and my head is spinning over her reaction. What to do? What to do? At this point, I really have no idea what I am going to do.

Melissa J. Roth CHt., Ph.D. is CEO and Founder of Alabama Hypnotherapy Center and Hypnosis Associates. She is a Certified Clinical Hypnotherapist and Doctor of Hypnotherapy. She is certified by the American Council of Hypnotist Examiners and the American Board of Hypnotherapy.  She is currently a member of the  American Council of Hypnotist Examiners, International Medical and Dental Hypnotherapy Association, International Association of Counselors and Therapists and the National League of Medical Hypnotherapists.

As a result of healing herself of irritable bowel syndrome and fibromyalgia using hypnosis, Melissa J. Roth founded Alabama Hypnotherapy Center, located in Birmingham, AL, in 1995 and has specialized in medical applications of hypnotherapy.  She has developed a number of unique approaches to chronic illnesses which have become the treatments of choice worldwide.  She partners with physicians of every specialty to promote hypnosis as an important and valuable tool in the medical toolbox.  She has a conversational teaching style that is sometimes heretical,  sometimes funny, but always informative.  In a sense, she teaches from experience.

[youtube=http://www.youtube.com/watch?v=X0lOdD86OdY&feature=player_embedded]

29/30

In my previous posts I listed the main social networking sites (part 1) and group forums (part 2) available if you are looking to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on general resources available, like blogs and websites. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.

Blogs

If you are reading this post then you are clearly already a reader of blogs and quite possibly have several you read and may even maintain one of your own. Blogs are a great way to share information and ideas. Fibromyalgia Haven has become my favorite place to go everyday. I have the chance to express myself here like I can nowhere else. My mental and emotional outlook is vastly improved since I began writing here, and I am constantly researching for new things to write about and share so my knowledge and understanding of Fibromyalgia has increased tremendously. I am proud to call myself a blogger!

I could not begin to list the multitude of Fibromyalgia blogs out there. I think I find a new one each day. But I will list several great sites which contain blog directories and make it easier for you to search a specific blog category. Here are links to the ones I am most familiar with followed by a description taken from their own site:

Alltop – Alltop is an “online magazine rack” of popular topics. We update the stories every hour. Pick a topic by searching, news category, or name, and we’ll deliver it to you 24 x 7. All the topics, all the time.  (P.S. – Have you noticed my Alltop “best of the best” badge I proudly display on my sidebar? Cool, huh!)

Blog Catalog – BlogCatalog is more than just a social community for bloggers; we are one of the largest blog directories on the internet. Whether you are looking to search blogs, connect with bloggers, learn more about blogging, or promote your own blog, BlogCatalog is for you.

BlogHer – The community for women who blog.

Bloglines – We track your favorite news, blogs, weather, and classifieds so that you don’t have to.

Delicious – The tastiest bookmarks on the web.

Digg – Digg is a place for people to discover and share content from anywhere on the web.

Google Blog Search – (Google needs no description.)

Networked Blogs – Blogs are social networks. Are you networked yet?

WordPress Blogs – Just Another WordPress Weblog

Yahoo 360 – A place that’s all about you to share with friends and family.

General Resources for Education and Information

Many of these sites have monthly newsletters you can sign up to have their top news e-mailed directly to you. It is a great way to stay on top of current events and news in the ever-changing Fibromyalgia community. 

National Fibromyalgia Association -The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.

Fibromyalgia Network – We’ll keep you current on fibromyalgia treatments, coping tips, and research to enrich your life.

Fibro Center – A community of education, support, and understanding for people with Fibromyalgia. (I hesitated to list this site as it is sponsored by Pfizer, but if even one person finds it useful then it is worth putting my personal bias against Lyrica aside.)

Fibro and Fatigue Centers – Whether you have been diagnosed or misdiagnosed, whether you have been searching for years to get your life back to “normal” or you are just starting to feel it slip away – there is help and hope!

Fibro 360 – A community of Hope and Understanding for People suffering from Fibromyalgia

FibroTalk – Online Community Support

We Are Fibro – The Social Support Network for those Living with Fibromyalgia

Please feel free to add your blog or favorite site in the comments.

27/30

From TheDailyPress.com

NEWPORT NEWS — A Virginia Beach doctor whose medical license was suspended last year after five patients in his care died is now teaching in Newport News. 

Rheumatologist Dr. Stephen Plotnick had his medical license suspended for 24 months in August 2008, and is teaching an anatomy and physiology course at Medical Careers Institute in Newport News, the School of Health Science at ECPI College of Technology.

Plotnick’s license was suspended after at least five of the patients he was treating for fibromyalgia died. The legal order between Plotnick and the Virginia Board of Medicine said Plotnick refilled prescriptions without examining patients and failed to insist, in some cases, on protections that are standard with the prescribed narcotics. 

The Virginia Board of Medicine’s findings also state that Plotnick let some patients “guide (their) own medication selection,” prescribing more than one drug and letting patients decide which to take and how much. In several cases, he kept prescribing the narcotics after patients, their families and other doctors complained that they were overmedicated or having problems with the medication, according to board documents.

If you want to read the full story click on the link above. Another bullet dodged. You’re welcome!

23/30

Here is the press release:

FOR IMMEDIATE RELEASE (PRINT READY ATTACHMENT INCLUDED) 
The Missing Pieces of the Fibromyalgia Puzzle 
“Perhaps the most sensible book on fibromyalgia ever written” according to Frederick Wolfe, M.D., Master, American College of Rheumatology and lead author of The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. 
This is the book that changes everything for patients, healthcare providers, and everyone with an interest in truly understanding the cause of fibromyalgia and chronic widespread pain. 
In The Missing Pieces of the Fibromyalgia Puzzle, author Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R. provides the revolutionary insight and understanding that redefines the landscape of fibromyalgia knowledge, diagnosis, and treatment by exposing the fallacy of pain from nowhere, revealing the failure of the fibromyalgia diagnosis, elucidating the true cause of fibromyalgia pain, and offering real treatment for what’s really going on. 
The Missing Pieces of the Fibromyalgia Puzzle is the most ground-breaking and transformational book ever written on fibromyalgia and chronic widespread musculoskeletal pain. It does what no other book or publication has ever been capable of doing. Through original, cutting edge clinical research results and evidence-based analysis, it actually identifies the cause of pain in fibromyalgia, the mechanism by which it evolves, how it is modulated, and how to effectively treat it. 
This compelling, scholarly, yet immensely accessible new knowledge demystifies fibromyalgia and chronic widespread musculoskeletal pain and makes everything that is unknown about the relationships between pain, tenderness, disability, sleep, weight related issues, psychological and psychosocial disturbances, and sexual difficulties clear and understandable.
Written for patients and healthcare providers, The Missing Pieces of the Fibromyalgia Puzzle will transform the lives of individuals afflicted with fibromyalgia and chronic widespread pain. Its enlightening blend of traditional and complementary therapies guides and empowers patients and their healthcare providers with the most unique, integrated, and thoroughly effective self-managed wellness recovery program ever published. It provides the substrate of truly justified hope and faith in the ability of individuals to transcend the suffering of fibromyalgia to make positive changes in their health and overall well-being. 
Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R., is a rheumatologist expert specializing in the diagnosis and treatment of fibromyalgia and chronic widespread musculoskeletal pain for thousands of patients over more than two decades. Dr. Sarkozi has researched, developed, and patented numerous unique orthotic devices and created original, innovative treatment programs to relieve symptoms and improve function in patients with fibromyalgia, chronic widespread musculoskeletal pain, and other arthritic conditions. He currently directs the Fibromyalgia Polypain Arthritis Center in Orange County, California. 
Ordering Information: Web Store: www.missingpiecesfibromyalgia.com. Telephone: 714-973-0106. Fax: 714-973-0124. Mail: Sagecoast Publishing, 801 North Tustin Avenue, Suite 503, Santa Ana, California, 92705. Softcover ISBN: 978-0-9819223-3-1, $29.95. To contact Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R. for interviews, speaking, or lectures use contact information above or email: speaker@fmpolypain.com. 
#      #      # 

Marla Sarkozi
Media Director
The Missing Pieces of the Fibromyalgia Puzzle
Sagecoast Publishing
Phone: 714-973-0106   Fax: 714-973-0124 

 

7/30

Sharon B. Stanford, MD is the Assistant Professor of Psychiatry and Family Medicine, Assistant Director, Women’s Health Research Program, University of Cincinnati College of Medicine. The article is partly an examination of the current drugs approved and used in the treatment of Fibromyalgia, and Dr. Stanford discloses that she receives grant/research support from several drug companies, but beyond the drug exploration, Dr. Stanford has written a very accurate and empathetic report on Fibromyalgia. She even touches on a recent conversation we had here on FibroHaven – which came first, the pain or the emotion. 

Stanford offers Ms. D as a cases study:

Ms. D, age 50, has a history of migraine headaches and is referred by her primary physician for evaluation of depression and anxiety. She reports deteriorating mood over 6 months, beginning when a minor car accident left her “very sore the next day.”

“Nothing helps” the persistent pain in her back, shoulders, and thighs, which she rates as 7 to 8 on a 0-to-10 pain scale. She describes an intense ache, “like having the flu,” that worsens with activity and in stressful situations. She also experiences nausea and intermittent diarrhea, debilitating fatigue, and sleep disturbance.

Ms. D reports she is depressed because she feels “just too tired” after work to keep up with social activities or housework. Her physician’s referral notes a normal physical exam except for tenderness over her upper back and hips. Laboratory testing is negative.

As you elicit more details about Ms. D’s mood, she continues to focus on her physical symptoms. She states that some days she wishes to die because her pain gets so bad, but she denies any plan or intent to harm herself. She worries that her symptoms will worsen and that she will become completely disabled.

Her primary physician attempted to relieve Ms. D’s pain with multiple trials of nonsteroidal anti-inflammatory drugs (NSAIDs) and cyclobenzaprine. She says she gained no benefit from the NSAIDs and discontinued the muscle relaxant because it made her too sleepy.

 

Sound familiar? We all understand the horrible cycle of pain Ms. D is in and the frustration she is experiencing just hoping and looking for some relief. Dr. Stanford is frustrated too and here is the treatment she proposes for Fibromyalgia patients.

TREATING THE WHOLE PATIENT

As a clinician who specializes in fibromyalgia, I counteract my patients’ and my own frustration with this condition by structuring office visits, determining realistic treatment goals, and treating all symptoms as part of a common syndrome rather than individual illnesses.

Structure office visits. Before every visit, have patients rate each symptom domain and write their top 2 or 3 concerns for that day (Click here for a sample form). Focusing on the patient’s most troublesome symptoms can help both of you feel greater satisfaction with treatment.

Educate patients. Ask them to discuss their beliefs about fibromyalgia; many know others with this condition or have researched diagnosis and treatment. Before developing a treatment plan, explain that their symptoms are chronic and all part of the same syndrome. Describe their pain as a complex phenomenon with possible peripheral and CNS components. Guide them to reputable Web sites and resources (see Related Resources).

Set realistic expectations. Many patients expect to resume an energetic and pain-free life, which usually is not the case with fibromyalgia (Box). Most medications are considered successful if they reduce pain by 30% to 50%, and side effects can be problematic. Discuss side effects before treatment begins to reduce patients’ anxiety and improve compliance in the first weeks.

Cognitive-behavioral therapy (CBT) for fibromyalgia incorporates relaxation techniques, helping patients view symptoms as manageable, reinforcing adaptive coping skills, and teaching them how to monitor thoughts, feelings, and behavior to change the view that they are helpless victims. A modest course of 6 weekly group CBT sessions significantly improved physical functioning in 25% of fibromyalgia patients (n=76) compared with 12% in a standard-care group (n=69), even though patients’ pain severity did not improve.¹⁶

Recommend exercise, lifestyle changes. Aerobic exercise can significantly improve well-being and physical functioning in fibromyalgia patients.¹⁷ Low-impact aerobics, such as done in warm water, usually are well tolerated, although any low-impact exercise can help. Because fibromyalgia symptoms often increase with physical activity, counsel patients to begin with a few minutes daily and increase very slowly each week.

 

Lifestyle changes are as important as medications in controlling fibromyalgia symptoms. In addition to exercise, recommend that patients:

• follow a daily routine
• pace activity to avoid exacerbating symptoms
• reduce stress.

Sometimes, I use the analogy of diabetes: treating fibromyalgia with medication but without changing lifestyle is like prescribing medication for a diabetic patient without changing diet. Follow up on this “homework” at each visit to reinforce that patients helping themselves is an important part of treatment.

 

 

There is nothing “murky” about Dr. Stanford’s approach to Fibromyalgia. I appreciate that her approach is to treat the WHOLE patient, not just individual symptoms, and she provides resources to help the patient and the doctor. Click on the sample form above. I think it is a great tool to use before any doctors visit. How often do we forget or feel too rushed to cover everything we intended at an appointment? This sheet will help improve communication between patient and doctor. The link to the box is also a useful summary on managing unrealistic expectations of Fibromyalgia patients. It is worth the read.

Even though I chose drug-free management for my Fibromyalgia, I was able to appreciate Dr. Stanford’s article very much. She clearly cares and is invested in helping her Fibromyalgia patients. Her article will help countless other psychiatrists treat their FM patients as well. And it is another step forward in promoting Fibromyalgia Awareness and Visibility.