The delivery of quality health care requires a sound working relationship between patient and provider, but this can be difficult to achieve even in the best of circumstances. Differences in treatment goals, expectations, time constraints, and educational background form substantial barriers to effective patient-provider communication. Important in any situation, this relationship is especially critical when treating a poorly understood, difficult to diagnose, and inadequately controlled condition like fibromyalgia syndrome.

Patients and physicians are often too personally vested in their roles to recognize these potential pitfalls, and the result is an unpleasant and dissatisfactory encounter for both patient and provider. To understand how this happens, it is constructive to look at the differences in how each party perceives this sometimes contentious relationship.

Fibromyalgia patients are typically looking for two things when they first visit their doctor. They want someone to listen and understand, and they want to feel better. Reasonable desires, certainly, but not without the potential to create problems, either.

As modern citizens, we have been conditioned to think of our doctor as we would our auto mechanic. When something breaks we have it diagnosed, repaired, and continue as before, and this is actually a pretty good analogy most of the time. If we get a respiratory infection, we get it diagnosed, take our antibiotics, and in a week our metaphorical motors are running as smoothly as ever.

This is the expectation many fibromyalgia patients bring to their first office visit… and it is likely very different from the approach their physician will take. Of course, physicians are fond of the auto mechanic analogy, too. Given their choice, most would probably choose to see patients with definable, structural illnesses that can be treated with a high probability of success. Unfortunately, fibromyalgia syndrome does not fit this model. The fact that fibromyalgia symptoms are so diverse and the pain so generalized immediately presents treatment problems for the physician.

Providers tend to be cautious anytime a patient presents with idiopathic pain. Legal and ethical responsibilities require the provider to prescribe pain medications for medical purposes only, and subjective pain with no definable cause is a favorite ruse for individuals attempting to illegally divert drugs. It is unfortunate for suffering patients that fibromyalgia syndrome presents in this manner, leaving physicians immediately faced with a dilemma, especially when the patient is unfamiliar.

This is not intended as an indictment of physicians or their training. Quite the opposite, this cautious approach is exactly what should be expected from a competent physician. Suffering fibromyalgia patients are not likely to have this idea foremost in their minds, though.

By the time they reach the doctor’s office, most fibromyalgia patients have already dealt with a barrage of skepticism about their invisible illness. Spouses, employers, friends, and co-workers likely will have expressed some level of incredulity about their condition at some point, and it is natural for fibromyalgia patients to eventually assume a defensive attitude about their health. Combined with a provider’s professional skepticism, this defensiveness sets the stage for potential patient-provider conflicts.

Even when these initial difficulties are overcome, the nature of fibromyalgia creates other problems. The lack of quantifiable testing leaves the diagnosis of fibromyalgia open for debate, and inaccurate diagnosis of fibromyalgia is relatively common. Medically unexplained symptoms and bodily dysfunctions are common complaints in primary care settings, and differences in the assessment of these symptoms can create a relationship challenge between the provider and patient.⁽¹⁾

Patient reaction to a diagnosis of fibromyalgia syndrome can vary according to expectations, but often follows a predictable pattern which can act to undermine the physician’s treatment plan.⁽²⁾ The typical first reaction is one of denial. As discussed earlier, most fibromyalgia patients are expecting a definable illness that can be adequately controlled, if not completely cured. A diagnosis of fibromyalgia syndrome usually offers neither of these desired outcomes.

Even if the diagnosis is accepted, patients still tend to seek out second opinions, both medical and non-medical, in an attempt to find a more suitable outcome. Many times this is done without the diagnosing physician’s knowledge and may lead to non-compliance with prescribed therapy serving to further undermine the patient-provider relationship. Physicians tend to see this activity as subversive and may come to view their fibromyalgia patients as difficult, demanding or illness-focused.⁽³⁾ As a result of these attitudes, patients may have their pain and frustrations discounted by health care providers.

These tensions tend to be self-reinforcing as patients become more frustrated with redundant testing, poorly treated symptoms, and condescending attitudes. Health care providers may begin spending less time with these patients (viewing them as having unrealistically high expectations) or come to see their illness as primarily psychosomatic.⁽⁴⁾⁽⁵⁾ Obviously, this situation does nothing to improve patient outcomes, and leaves both patient and provider emotionally drained.

The good news is that solutions to this problem have been identified, but they require the commitment of both patient and provider in order to be effective. Shared decision-making, in which the patient plays an active role in selecting appropriate therapy, has been shown to make both a qualitative and quantitative difference in patient outcomes.⁽⁶⁾ Including family members in the treatment plan also tends to enhance improvement.

“One size fits all” therapy does not work well in treating fibromyalgia syndrome, and an interdisciplinary approach often achieves better results.⁽²⁾ Providers who consult with allied health team members report better results and less stressful patient interaction when treating fibromyalgia patients.

Above all, successful treatment of fibromyalgia requires a hopeful attitude from the patient. Patience, encouragement, and motivation are, then, necessary components of any treatment plan. Cultivating this cooperative partnership early in treatment helps avoid many of the pitfalls that can eventually poison the patient-provider relationship.

Learn more about fibromyalgia at: www.myalganex.com

1. Fitzcharles MA, Boulos P. Inaccuracy in the diagnosis of fibromyalgia syndrome: analysis of referrals. Rheumatology. 2003 Feb;42(2):263-7. [↩]
2. Alghalyini B. That sinking feeling: a patient-doctor dialogue about rescuing patients from fibromyalgia culture. Can Fam Physician. 2008 Nov;54(11):1576-7. [↩] [↩]
3. Asbring P, Närvänen AL. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003 Aug;57(4):711-20. [↩]
4. Stutts LA, Robinson ME, McCulloch RC, Banou E, Waxenberg LB, Gremillion HA, Staud R. Patient-centered outcome criteria for successful treatment of facial pain and fibromyalgia. J Orofac Pain. 2009 Winter;23(1):47-53. [↩]
5. Robinson ME, Brown JL, George SZ, Edwards PS, Atchison JW, Hirsh AT, Waxenberg LB, Wittmer V, Fillingim RB. Multidimensional success criteria and expectations for treatment of chronic pain: the patient perspective. Pain Med. 2005 Sep-Oct;6(5):336-45. [↩]
6. Bieber C, Müller KG, Blumenstiel K, Schneider A, Richter A, Wilke S, Hartmann M, Eich W. Long-term effects of a shared decision-making intervention on physician-patient interaction and outcome in fibromyalgia. A qualitative and quantitative 1 year follow-up of a randomized controlled trial. Patient Educ Couns. 2006 Nov;63(3):357-66. [↩]

Fibromyalgia syndrome (FMS) is primarily a disorder of sensory amplification in which heightened sensory input causes a complex array of symptoms, including pain, fatigue, insomnia, and mood disorders.⁽¹⁾ This broad range of clinical manifestations can make fibromyalgia syndrome difficult to treat and usually requires a multi disciplinary approach to therapy. A rational therapeutic plan will target both the underlying sensory amplification disorder and the resultant functional symptoms.

The study of pain pathways is an area of great interest for fibromyalgia researchers, and along with genetics, provides significant hope for advancement in the diagnosis and treatment of FMS. Current research indicates that dysfunctional sensory amplification can occur via several neurochemical pathways, and treatment modalities usually involve pharmacologic manipulation of these neurochemicals.

Recently, much of the focus has been centered on the serotonin-norepinephrine descending pain pathway.⁽²⁾ In this pain processing pathway, serotonin and norepinephrine are used by the brain as intermediaries to inhibit pain signals from the body. Deficiencies of serotonin or norepinephrine cause this feedback mechanism to misfire, and pain processing signals remain unregulated.

This has sparked interest among clinicians because some studies indicate that serum levels of serotonin and norepinephrine are diminished in fibromyalgia patients. Subsequent clinical trials with medications that modulate serotonin and norepinephrine (i.e. amitriptyline, duloxetine, venlafaxine) have proven beneficial to some subjects.⁽³⁾⁽⁴⁾

Another area of active research involves the voltage-dependant calcium channel which controls the release of excitatory neurotransmitters involved in pain processing, including glutamate and substance P. Inhibiting the release of these compounds decreases pain signal processing. Pregabalin and gabapentin are the two primary medications of this class used in fibromyalgia patients.

One of the more troubling aspects of developing effective treatments is the idea that fibromyalgia syndrome can affect more than one pain processing pathway, and further, the pathways involved may not be the same for each patient. So, a medication that works reasonably well in one patient may be completely ineffective (or detrimental) in another.

Genetic research into fibromyalgia even raises the possibility of multiple etiologies for FMS. Several different genetic markers are under study, and it is possible that not a single gene, but a variable combination of genes, is responsible for the expression of fibromyalgia syndrome.^(5)(6)(7)(8) Simply stated, the root cause of fibromyalgia may not be the same for all patients.

Because the currently available treatments for primary pain provide incomplete relief, attention also must be given to treating the functional symptoms of fibromyalgia syndrome. The treatment of pain amplification disorder is almost exclusively the domain of pharmacology, but the broad nature of related functional symptoms invites the use of many treatment modalities, both pharmacologic and non-pharmacologic.

It is easy to imagine how a pain amplification disorder like fibromyalgia syndrome could cause otherwise sub-clinical ailments to become symptomatic and require treatment. For instance, a headache in a hypersensitized fibromyalgia patient might be experienced as intolerably painful, while the same headache in a person with normal pain processing pathways might be perceived as only a nuisance.

Of course, this is an oversimplification. The connection between fibromyalgia and other conditions (like depression) involves both genetics and endocrinology, and is not just a result of heightened pain sensations, but the point is that fibromyalgia syndrome has the potential to adversely effect virtually any system in the body.

Treatment of these functional symptoms is primarily symptomatic or palliative in nature, and since not everyone has the same symptoms, the treatment must be individualized. This variability accounts, at least in part, for the numerous testimonials and miracle cures found online. It may be possible to virtually eliminate a particular functional symptom of fibromyalgia without correcting the underlying pathology. Confusion arises when this is mistaken as a “cure” for fibromyalgia syndrome.

Some of the more popular treatment modalities for these functional symptoms include:

• Pharmacologic agents
• Education
• Cognitive Behavioral Therapy
• Nutrition & Dietary Supplements
• Biofeedback
• Exercise Programs
• Therapeutic Yoga
• Massage Therapy
• Acupuncture
• Electro therapy

It is important to remember that the treatment must be individualized when addressing these symptoms. Therapies will not always have the same effect on individual fibromyalgia patients. The only way to arrive at a truly optimized treatment plan is through trial-and-error. Understanding this before treatment begins should help fibromyalgia patients keep a positive attitude while sorting through the broad collection of available treatments.

Due to the variable etiology and expression of fibromyalgia syndrome, finding effective treatments can be difficult. Dividing treatment goals into two categories- reduction of primary pain amplification, and reduction of resulting functional symptoms- can clarify the procedure, and allow for the individualized development of an optimal therapeutic plan.

Learn more about fibromyalgia at: www.myalganex.com

1. Lawson K. Treatment options and patient perspectives in the management of fibromyalgia: future trends. Neuropsychiatr Dis Treat. 2008 Dec;4(6):1059-71. [↩]
2. Senba E, Imbe H, Okamoto K. Descending facilitation in chronic stress and chronic pain state. Nihon Shinkei Seishin Yakurigaku Zasshi. 2008 Feb;28(1):29-35. [↩]
3. Russell IJ, Vaeroy H, Javors M, Nyberg F. Cerebrospinal fluid biogenic amine metabolites in fibromyalgia/fibrositis syndrome and rheumatoid arthritis. Arthritis Rheum. 1992 May;35(5):550-60. [↩]
4. Hauser W, Bernardy K, Uceyler N, Sommer C. Treatment of fibromyalgia syndrome with antidepressants: a meta-analysis. JAMA. 2009 Jan 14;301(2):198-209. [↩]
5. Bondy et al. The T102c polymorphism of the 5-HT2A-receptor gene in fibromyalgia. Neurobiol. Dis. 1999;6:433-439. [↩]
6. Offenbaecher et al. Possible association of fibromyalgia with a polymorphism in the seratonin transporter gene regulatory region. Arthritis Rheum. 1999;42:2482-2488. [↩]
7. Buskilla et al. An association between fibromyalgia and the dopamine D4 receptor exon III repeat polymorphism and relationship to novelty seeking behavior. Mol. Psychiatry 2004;9:73. [↩]
8. Gursoy et al. Significance of catecholamine o-methyl transferase gene polymorphism in fibromyalgia syndrome. Rheumatol. Int. 2003;23:104-107. [↩]

For all the information currently available about fibromyalgia, relatively little exists for fibromyalgia spouses. This is unfortunate, since I know that even the strongest of marriages will be tested when faced with fibromyalgia. Most of what I know about being a fibromyalgia spouse, I’ve had to learn the hard way. So, in the interest of helping others avoid my mistakes, I’ve recounted some of the lessons I have learned, in roughly the order I have learned them.

Lesson One: I Can’t Feel Sorry For Myself

As it slowly dawned on me that my wife’s condition would be permanent, and that our lives would not go back to how they had been pre-fibro, I began to feel cheated. My wife and I had always enjoyed being outdoors and active, and a large part of our relationship was based on these common interests (our first date had even been a canoe trip). It looked, now, like these things were gone for us, and that was just the beginning of the changes. Vacations, retirement plans, social engagements- everything had been thrown into a state of chaotic uncertainty.

At first, I think I was stunned by the sheer magnitude of changes that fibromyalgia meant for us, and I felt pretty sorry for myself. My wife’s fibromyalgia had been triggered by a rather serious illness, so for a long time afterward I kept hoping that she would “snap out of it” and be herself again. I know I brooded for quite a while before, finally, accepting the fact that there was no going back. Life had changed. All that was left was to decide what to do about it. This was probably the toughest, and most important, lesson I learned. Everything else I know about coping as a fibromyalgia spouse has flowed from the realization that I can’t afford to feel sorry for myself. I know that many spouses can’t manage to get to this point, and I can only say that for me, I really meant it when I said “for better or for worse.”

Lesson Two: We Need A Plan

Lesson two followed lesson one almost intuitively. Once I accepted that our lives had permanently changed, the next logical question was, “What do we do now?”

Had we not been able to establish new goals together as a couple, I’m sure our marriage would have fractured. Our relationship certainly couldn’t have grown, and in my experience, stagnant relationships don’t last long. We had to take a sober look at what was possible and adjust our long-term goals right along with our daily goals. Doing this brought an enormous about of stability back to our lives, but as I would learn, we still had a lot of adjusting to do.

Lesson Three: Appearances Can Be Deceiving

Some lessons I learned relatively easily, but not this one. I think it is because, unlike my wife, I could sometimes forget about fibromyalgia. For instance, I could go through a whole day of work scarcely thinking about it.

Eventually, though, I came home and if I didn’t quickly remember, I was setting myself up for another tough lesson. Many times, early in her illness, I made the mistake of assuming she felt fine, and she, having been suffering in silence for hours, directed the full force of her pain and frustration at me.

It probably took me longer than it should have, but eventually I learned that fibromyalgia doesn’t look like anything, and even though my wife might appear tranquil, she could be hurting and just barely keeping it together on the inside .

Lesson 4: It’s Not Personal

When, because of my insensitivity, these types of confrontations did occur, I almost always felt blind-sided, because I really didn’t anticipate them. I wasn’t living with fibromyalgia 24 hours a day, so to me her outbursts appeared excessive and irrational. I usually left these situations feeling hurt and more than a little confused.

I felt discounted in other ways, too. Sometimes, I would notice a blank look on her face when I would be talking to her, like she was deep in thought about something much more interesting than what I was saying. Other times, she would go to bed as soon as I got home from work, making me think she would have been happier if I had just stayed there.

I know, now, that these actions were not directed at me personally. The glazed look wasn’t because she was ignoring me; it was because she was having trouble focusing. She didn’t go to bed early to avoid me; she went to bed early to avoid lashing out at me. Knowing these things doesn’t fix everything, but it does help to keep them in mind, especially when I’m feeling neglected.

Lesson 5: Communication Makes Life Easier

One of the smartest things I’ve learned to do since my wife’s illness, whether it’s first thing in the morning or when I get home from work, is to ask her how she is feeling before I say anything else. Sharing this little bit of information has saved us much anguish. It is so much easier for her to tell me how she feels than it is for me to guess (I’m usually wrong). This goes back to the “Appearances Can Be Deceiving” lesson.

Lesson 6: Sometimes I Need to Leave

Sometimes her answer to, “How do you feel?” is a forced, “I hurt,” between clenched teeth. I’ve learned that during these times life is easier for both of us if I make myself scarce. I’m not saying I leave the county or anything, but I might find something to do in the garage for a while. I’ve learned that retreat can be a wise strategy.

Lesson 7: I Have To Slow Down

Learning to live at a pace that is comfortable for my wife has been surprisingly challenging. Slowing down means not only doing fewer things in a day, but also, doing those chosen things at a slower pace. I’m learning to walk slower, to talk slower, and to eat slower. I’ve learned that if we go at her pace, we get to enjoy a lot more of life together.

So, that’s it: seven hard won lessons. Of course, I still need to be reminded of these lessons myself periodically. I’m quite capable of falling into periods of self-pity, and I still can be dumbfoundingly insensitive to my wife’s condition. I don’t know if I’ll ever really be able to eat slower, but I do know I’m learning to be a better fibromyalgia spouse.

Learn more about fibromyalgia at: www.myalganex.com

Fibromyalgia is pervasive. If you or a loved one are afflicted, you already know this. Left unmanaged, it can take control of your daily activities, your thoughts, your sleep, and even your interactions with other people. Since fibromyalgia is a long-term chronic disease, most patients eventually come to the realization that it is better to be proactive than to allow further erosion in the quality of their lives. With that in mind, here are 10 things you can do today to start getting your life back in order.

1. Take Back Your Sleep Cycle

Set up a regular routine for sleeping by going to bed and getting up at the same time each day, and make sure your bedroom has an atmosphere that is conducive to sleeping. This means not watching TV or spending time on the computer while in bed. Keep your bedroom dark, quite and cool. Try to avoid spicy foods or too many beverages before going to bed, and never underestimate the value of a good pillow.

2. Eat Right

This is a lot easier said than done, but it is possible. Look around the web and you’ll find a lot of advice about fibromyalgia and diet, but the advice is often contradictory and confusing. What works for one patient may not work for the next. Fibromyalgia is a perplexing syndrome. It’s a diverse disease that doesn’t present the same way in every patient. This doesn’t mean that you have to give up on eating right, though. You just have to do a little trial-and-error first.

Experience has shown that a few foods seem to cause problems for most fibromyalgia patients, so eliminating them is a good place to start. These include coffee, carbonated beverages, alcohol, and foods high in fat. It is important to realize that there is no “Fibromyalgia Diet” suitable for all patients. It will take time and effort discern the most appropriate diet for you. A journal of your dietary habits can really help speed this process.

3. Keep A Journal

 Journals aren’t just good for remembering what you had for dinner. Keeping a brief journal of your activities should become an important part of your daily routine. This doesn’t have to be extremely detailed or time-consuming, though detailed journals are usually more effective. As a minimum, list your day’s basic activities, any pain experienced and the approximate time of onset. Eventually, correlations between what you are doing and how you are feeling will become evident. This does require some diligence, but remember that greater effort will mean faster rewards.

4. Know Your Triggers

You may already know some of the factors that cause your fibromyalgia to flare, and your journal will help you discover more. Be cognizant of these triggers, even going so far as to write them down. Learn to recognize and avoid them even when you may be preoccupied. Fibromyalgia is different for everyone; it pays to know your fibromyalgia.

5. Educate Yourself

Fibromyalgia is personal, varying widely from individual to individual. No one knows your condition better than you (not even your doctor), so it is important that you empower yourself with knowledge. A standard treatment protocol does not exist for fibromyalgia. Because of it’s nature, your fibromyalgia must be managed by you.

6. Exercise

This goes against the natural tendencies of most fibromyalgia patients. After all, who wants to exercise while sleep deprived, with sore joints and a migraine headache? It may be counterintuitive, but exercise does benefit most fibromyalgia patients. The key to a successful exercise program is to start slowly, always being careful not to overexert yourself. Strength training, flexibility exercise, and aerobic activities are of particular value to fibromyalgia patients.

7. Start Cognitive Behavioral Therapy

This form of psychotherapy utilizes rational analysis to influence our thought processes and ultimately our behaviors. It has proved itself particularly useful for fibromyalgia patients, and best of all, you can do it all by yourself. A quick web search should point you in the right direction to get started.

8. Communicate

Let the people you care about know how you are feeling. Tell them in advance when you are in pain, stressed, or feel your patience waning. Do not hold your feelings inside until you feel compelled to release them in anger or frustration. Your family members want to help you. Remember to let them know important they are to you.

9. Accept Your Limitations

Fibromyalgia is a chronic disease and it is not likely to leave you. It may limit the quantity of what you can accomplish, but doesn’t have to limit the quality. Focus on those things that you can do, and pace yourself so as not to become exhausted or frustrated.

10. Congratulate Yourself

Fibromyalgia patients endure a lot, suffering in silence most of the time, but they also accomplish some amazing things in light of their condition. Raising a family, going to work, walking the dog… all of these things take extra effort for the fibromyalgia patient, yet everyday they get done. So, give yourself a pat on the back occasionally. You deserve it.

Learn more about fibromyalgia at: www.myalganex.com