The Fibromyalgia Wellness Project

 

A new experimental symptom reduction program for fibromyalgia sponsored by the National Institutes of Health will become available June 1st for a limited number of participants. “The Fibromyalgia Wellness Project” is a web-based intervention program that is part of a research study being directed by William Collinge, PhD, of Collinge and Associates, an independent research organization funded by NIH.

The project employs a novel approach using online self-monitoring and individualized feedback to help users discover how they can reduce their symptoms. The user visits the website for a few minutes, several times each week, for several weeks. With each visit they mark certain health-related behaviors, health management strategies they would like to track (including treatments, drugs, etc.), and symptom levels over the past 24 hours. Over time their responses build a personal database for that user.

The program then analyzes the user’s personal data to identify what behavior patterns or strategies are tied to lower symptom levels for that individual. This enables the user to compare different strategies (for example, changing bed times, trying different foods or self-care practices, types of exercise, drugs, dose levels, etc.) and get objective feedback about what works best to reduce their symptoms.

“Fibromyalgia is a ‘one size fits one’ condition – no one approach works the same for everyone. We want to help people discover what works best for them as a unique individual,” Collinge states. “It’s really a journey of personal discovery to learn how you can reduce symptoms and improve well-being in your own situation.” One person’s optimal strategies may also change over time, he says, making it even more valuable to get objective feedback about what’s working and what isn’t.

In the Phase I study, which was completed in 2007 with 40 FM sufferers, using the program was tied to significant improvements in physical functioning, productivity, mood, and sense of control over health. The impact on productivity–in domestic, work, or school related activities–was particularly appreciated by the participants, Collinge says.

Beginning June 1 the Phase II project will enable 200 people with FM to try out the online program for three months. A larger study is planned for the fall.

Gluten is the complex protein found in wheat, barley, rye and some oats. For many, our bodies are unable to digest these proteins properly. That headache you experience after a meal of pasta may be an indicator that you are gluten intolerant. If you feel sleepy and lethargic after a French toast breakfast, your body may be having too hard a time trying to break down the food you are consuming.

New evidence suggests that as many as 1 in 7 are gluten sensitive, or gluten intolerant. Many chronic illnesses are associated with gluten intolerance: Fibromyalgia, chronic fatigue, rheumatoid arthritis, thyroid disorder, and diabetes. It is also thought to be the cause of infertility in some women. Gluten intolerance should not be confused with the less common and more severe auto-immune disorder, Celiac Disease.

If you suspect you may have sensitivity to gluten, consider eliminating it from your diet. All gluten intolerances are easily identified by an elimination diet. Start for a period of two weeks and remove all wheat, barley and rye based foods. It is helpful to keep a fibromyalgia food mood journal during this time, and log what you eat along with any symptoms you experience. If you have intolerance, improvements may be felt in just a few days. For myself, eliminating gluten from my diet quickly lead to massive improvements in the many symptoms I experience living with Fibromyalgia.

The first thing I noticed was an increase in energy. I began feeling less fatigued and sluggish. Then I noticed my head was feeling clearer, less foggy. Eventually I also noticed my back muscles were no longer on fire with pain, and my shoulder muscles seemed less tense. The thing that cinched it for me though was the improvement with my hands. The joints in my hands had become so painful I was certain I was developing arthritis. I had a hard time gripping and opening things, my coordination was off – I dropped things often, and my hands frequently woke me up throughout the night with throbbing and aching pains. After just ten days on a gluten-free diet there was a noticeable improvement. I needed no further proof that I am gluten intolerant.

Blood tests are available to test for gluten intolerance, but it is possible to test negative and still have sensitivity to gluten. The easiest way to test if you are intolerant is to simply eliminate it from your diet. It takes a commitment, and careful food preparation, but the benefits of improved health and wellbeing far outweigh the disadvantages. And if you are worried you may miss your favorite gluten based foods too much, don’t. With growing recognition of gluten intolerance comes a growing variety of substitutes and options. Eat well, be well.

Note: This is a reprint of an article I wrote for Optimal Nutrition’s monthly newsletter.

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.

In the past a lot of my meals would begin either low carb or gluten free, not because I was consciously avoiding carbs or gluten, but because that is what I wanted to eat. For instance, one of my favorite breakfasts to cook is scrambled eggs with ham, swiss & fresh spinach wilted in. My husband and I love this for breakfast. And after eating it we would both feel satisfied and energized, but without that “oh my gosh I ate too much” feeling. But here is where things are different now. In the past I might have eaten my eggs, been satisfied – but not full – so I would end my meal with a piece of buttered toast. It was like I did not recognize being full without feeling FULL. Does that make sense? For years my mind has been conditioned to associate the heaviness of feeling full with having eaten a complete meal. Since going gluten free I seldom get that heavy full feeling and I am satisfied for hours after eating. All of a sudden I am becoming aware of how much extra I was eating to satisfy my mental hunger. My body can clearly subsist on much less than I was providing it.

We talked a lot last week at my support group roundtable about the social and emotional component to eating. I associate food with a lot of different things. Mashed potatoes are my go to comfort food when I am emotional. I ate a lot of mashed potatoes when recovering from my accident, which goes a long way in explaining my 17lb weight gain. Homemade spaghetti and meatballs is the one dish that is sure to bring my entire family together, and there better be a big pot because we come hungry and eat a lot! And thank goodness there are no Original Tommy’s Burgers where I live, because every time I see one I want to pull over and order a plate of chili cheese fries, because that is what I would eat with my friends at 2 AM after we had spent the evening drinking and dancing. All of these “bad for me” foods make me feel good when I think about the memories I associate to them.

At our meeting one of my members suggested I start a Food Mood Diary. For years she has been charting what she eats with how she feels, and she has been able to clearly identify patterns between her Fibromyalgia symptoms and the food she consumes. For instance, she expects and prepares herself for a flare-up at the first of the year based on the rich foods she eats from Thanksgiving to Christmas. When she said this, a lot of us nodded our heads, remembering how awful we feel around the holidays and first of the year. But even on a smaller day-to-day scale she is able to determine what foods attribute to which feelings and symptoms. It makes sense. And now that I am becoming more aware of what I am eating and how I am feeling, I think it would be a good time for me to begin a diary of my own.

As I mentioned before, I do not believe that everyone with Fibromyalgia is also gluten intolerant, but I do believe that what we eat and drink plays a large role in the severity and frequency of our symptoms. It is common sense that eating vegetables makes us feel better than eating fried foods, but often the emotional or social component of eating outweighs the common sense component. Maybe by charting mood with food, it will be easier to make that connection and begin to make the healthy food choice. You can be sure I will be sharing with you all of my successes and failures and I am interested in hearing any of your own.