Fibromyalgia Expert

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I've just been told that I have fibromyalgia.
What are the first steps to take?

Dr. Pierre Arsenault, Ph.D., M.D., CPI

Being told that you have fibromyalgia is an experience that can cause anxiety and/or bring a certain sense of liberation. This is because sometimes, patients only learn their diagnosis after a long string of visits to different doctors and after numerous tests and examinations. The anxiety over the unknown is followed by a more reassuring period of identification. “At least I don’t have a serious disease!” they tell themselves. For others, after doing some reading or after hearing comments from friends and family, knowing that they have fibromyalgia is terrible. “After all,” they say to themselves, “don’t people with fibromyalgia suffer continually without anyone knowing how to help them?”

For our part, we believe that fibromyalgia, although a challenging condition, can be controlled enough to permit an acceptable quality of life and doesn’t need to be a debilitating condition. Although the clinical research data do not, at this time, indicate that a cure is possible, there are numerous testimonials from patients who have managed to overcome their symptoms and who continue to play a meaningful role in society. Given the large amount of research that is being carried out daily in different parts of the world, there is every reason for hope for the future of fibromyalgia treatment. In the meantime, what are the first steps to take after the diagnosis is announced? What approaches should fibromyalgia patients adopt?

Based on the clinical experience I’ve accumulated over the years, I can make a few recommendations once a diagnosis of fibromyalgia is known:

Don't lapse into discouragement or anguish. Instead, keep hoping. Fibromyalgia is a condition for which medical science has not yet solved all the mysteries. In this regard, it can be upsetting or even discouraging to think that we are still in our infancy in terms of what we know about the mechanisms responsible for the development of this syndrome. Without this knowledge, there can be no cure. However, it has been shown that adopting a catastrophizing approach results in an increase in the symptoms. You should therefore be aware of and change your negative thoughts, which are an impediment to pain rehabilitation. Most countries to invest in research aimed at finding therapeutic solutions. You should therefore not lose heart but remember that major efforts are being made to solve the problem.

Relieve your symptoms by teaming up with your doctor. Fibromyalgia symptoms include pain, sleep disturbances, fatigue, difficulty performing certain activities and, sometimes, other satellite symptoms, such as headache and abdominal and/or pelvic pain. Only with an honest and serious partnership between the patient and the doctor can the best treatments be identified. This partnership requires mutual respect and honesty. To help your doctor, prepare for your next visit with him/her. Know how to provide the most relevant information for defining your condition during the next visit (pain intensity, impact on your sleep, emotions, daily activities, etc.). Your doctor will appreciate your giving him/her the essential information about your condition in a concise and precise manner. Some patients think that the more information they give to their doctor (for example, by reading full pages describing situations they’ve experienced), the more they will be able to make him/her aware of the difficulties they’ve endured and the more the doctor will be able to sympathize and help. In actual fact, the doctor only needs answers to certain questions in order to better guide your treatment. If you go on and on reading or recounting in too much detail what you are going through, you risk losing his/her interest. Obviously, you shouldn’t fail to mention any new or more severe symptoms! Also, not every discomfort can necessarily be explained by fibromyalgia alone.

Accept that there is an adjustment period of varying duration. The proposed treatments for reducing fibromyalgia symptoms should be adjusted for each patient. Even if someone you know uses a given approach (pharmacological or nonpharmacological), it doesn’t mean that it should be used in your case, too. Patients are unique in terms of how they respond to therapies. What's more, a given patient's condition itself fluctuates over time. A recipe that works in one instance may be less effective in other circumstances. It should be pointed out that adjustments can be made at different times. You should therefore be patient and cautious. Lastly, the medication prescribed at the time of diagnosis could cause initial side effects, which will often diminish over time (generally, in a few weeks). Obviously, if the side effects are tolerable and don't seem to be dangerous, I often therefore recommend to patients that they give the medication a chance.

Swing into action with balance and determination. The most common mistake when a diagnosis of fibromyalgia is announced is for patients to stop all their activities. In our opinion, those who adopt a sedentary approach become the most vulnerable, those who suffer the most and those at greatest risk for depression and all kinds of grief (financial losses, separation, divorce, etc.). The other mistake is to want to make up for lost time during less painful periods. You should remain active, but in a balanced manner. If you haven’t done any physical reconditioning, overdoing it will lead to an upsurge in pain. When undertaking such reconditioning, adhere to the following principle: "Start slowly and increase slowly"! At the beginning, a few minutes of exercise a day (for example, a brisk walk) and small increases over time will be more beneficial and less discouraging than three sessions of intense physical activity.

Use reliable reference sources. It's unfortunate that some patients give credence to information from unreliable sources. You should be cautious, for example, when reading information on certain Internet discussion groups. I’ve often checked the contents of some of these sites and realize how easy it is to turn truth into lies. You should be suspicious both of sites that dramatize fibromyalgia and those that trumpet magic solutions. There’s no universal magic bullet, even if some fibromyalgia patients give testimonials of quasi-curative treatments. On the other hand, there are solutions centred on education, a multimodal treatment approach and self-empowerment, which are sources of hope for good pain management.

Why is my doctor telling me to exercise?

Answer from Dr. Pierre Arsenault, Ph.D., M.D., CPI

Fibromyalgia patients are often told by their doctor that they should exercise, but in general, they aren't told which type or types of exercises and at what pace they should engage in them. Exercise experiences are therefore often unpleasant, short-lived, discouraging and punctuated with failure. Why consider doing exercises when you have so much pain? There really must be a mistake, no?

Actually, your doctor is right! You have to move and keep yourself active, both physically and mentally. Otherwise, ankylosis, fatigue, and loss of motivation and interest will take over. The pain will lead to a vicious circle of deterioration, a potentially endless spiral.

In this figure, the arrows show the circular effects of pain: from pain to sleep disturbances, from sleep disturbances to fatigue/anergia, from fatigue/anergia to inactivity/hypoactivity, from inactivity/hypoactivity to a depressive state and from the depressive state to pain.

Physical Benefits

Physical exercise is beneficial for everyone. It has a slew of benefits on the body. They include improved sleep quality; increased flexibility, balance and coordination; a reduced risk of developing certain types of cancer; improved respiratory function; a reduced risk of cardiovascular disease and hypertension; increased muscle strength; and bone strengthening and protection. The benefits of physical exercise have been demonstrated in patients with cancer.

It has been shown that people who are completely sedentary are at risk for developing hypokinetic syndrome, which is characterized by pain and ankylosis. Humans are made to move, and if they don’t, they will deteriorate, gain weight and become even more inactive and sometimes even morally depressed.

Of all the consensuses regarding the treatment of fibromyalgia, none is supported more than that of including a physical activity program as part of one's rehabilitation. In medical literature, over 500 articles cite the benefits of exercise for fibromyalgia or the adverse effects of inactivity.

Psychological Benefits

Many studies have been published over the past decade on the positive effects of physical exercise on depressive and anxiety states. In one study, physical exercise even proved to be equal to antidepressants in major depression. Initial, preliminary studies involving fibromyalgia patients seem to concur.

Physical exercise, especially aerobics, increases the main neurotransmitters in the central nervous system involved in depression and pain (namely, serotonin, norepinephrine and dopamine). When the level of any of these neurotransmitters is increased, depressive states improve.

Improving Pain

People experiencing pain generally tend to limit their physical activities. This is a normal reflex, and it’s heightened when there is acute pain (fracture, bruise, etc.). A few days' rest will enable the injured tissues to repair themselves and to gradually resume their function or functions.

Chronic pain shouldn’t be viewed in the same manner, and it shouldn’t mean rest. It's a mistake to think that resting for long periods of time enables structures to repair themselves. Indeed, in chronic, noncancerous pain, a different set of mechanisms is involved. It's no longer inflammation in the peripheral tissues (muscles, tendons, etc.) that dominates, but rather central nervous system excitation. And through neuronal reflex pathways, this excitation increases contractures and ankylosis. Physical exercise not only increases the central neurotransmitters that inhibit pain, but they also optimize a multitude of peripheral and central anti-pain mechanisms.

These Exercises are Demanding!

It would be a lie to say that starting and continuing with a physical exercise program doesn't require a good measure of courage. It’s an obvious mistake to exert yourself when you're in pain, isn’t it?

In reality, it's not about doing intense exercises at the beginning. My experience tells me that there needs to be a slow progression in exercise intensity if you want meaningful results. The intensity of the pain and the fatigue that accompany exercises require continual adjustments to the patient's program, and each patient's abilities and responses also need to be taken into account here.

Which Exercises?

Before undertaking an exercise program, it's important to have a good knowledge of each patient's physical limitations (cardiovascular, respiratory, metabolic and other restrictions) other than those directly related to pain. For example, the exercises recommended to an elderly fibromyalgia patient who also has severe chronic obstructive pulmonary disease will be different from those prescribed to a younger fibromyalgia patient with normal cardiopulmonary function. It's essential before undertaking an exercise program⎯and if you have a medical condition⎯to have a thorough physiological evaluation done by a doctor or other qualified health professional. Taking your clinical condition into account, these professionals can recommend an appropriate exercise program.

Since most studies tend to show that aerobic exercises provide the greatest benefits to fibromyalgia patients, they should be targeted. However, to reach what is referred to as the "aerobic level", it takes relatively long periods, depending on one's level of achievement and motivation, endurance, socio-environmental context and even financial context.

I often suggest to my patients that they start with a program of very light walking and gradually increase their speed and distance, for example, starting with only 5 minutes of brisk walking a day outside the house with 2- to 3-minute increases until they are doing walks of 40 to 45 minutes (or longer) every day. Other types of aerobic activities yielding similar results can be chosen as well: cycling (stationary or not, elliptical, etc.).

Not many studies have examined the usefulness of exercises that include muscle strengthening. However, theoretically, there is no reason to think that this type of activity is harmful in patients who can tolerate them. Again, the principle of gradually increasing the intensity should be the rule. In many patients, physical deconditioning is a barrier to their resuming overly demanding activities. Lastly, the muscle stretching mentioned in certain books on the treatment of fibromyalgia does not, in our opinion, pose any health risks but is not superior to aerobic exercises in terms of effectiveness and, therefore, not a greater priority.

Conclusion

It's important to consider physical exercise if you want to hope to escape from the grips of fibromyalgia. You should discuss physical exercise with a health professional who is familiar with the characteristics of and limitations imposed by certain medical conditions. You should bear in mind that this is a long-term undertaking and that the benefits don’t always appear quickly. Making progress is like a rollercoaster: there are improvements and setbacks. Success comes with perseverance. And if you fail sometimes, you shouldn't get discouraged, but rather start the program again where you left off and ease up a bit! The patients whom I've seen who have claimed that they stopped having so much pain have systematically included an exercise program in their daily routine. There is presently no confirmation from medical research that it's possible to be cured of fibromyalgia, but there is no question that exercise is one of the greatest determinants of a patient's quality of life.

Lastly to ensure the continuity of an exercise program, it might be useful to create a log for marking down your daily successes. The following table is an example of such a tool.

This table is just one example of parameters that can be recorded. It can be adapted to each patient’s needs. The idea is to keep track by entering your comments and observations on a daily basis. Regularity is much more important than intensity! But sooner or later, you will have to increase the intensity if you want to benefit from the virtues of exercise and promote reconditioning. Lastly, it's a good idea to schedule a recovery rest period weekly on your calendar. I wish you good workouts!

How can I work together with my doctor to manage my pain?

Answer from Dr. Pierre Arsenault, Ph.D., M.D., CPI

Fibromyalgic pain is diffuse, chronic and of the fluctuating intensity, and it’s influenced both by internal (stress, anxiety, depression, etc.) and external (cold, humidity, etc.) circumstances. It’s difficult for a doctor to come up with a stable therapeutic regimen for a condition that continually fluctuates over time. In the beginning, it’s important that the patient and doctor exchange information periodically about the circumstances that exacerbate the pain or cause it to go into remission. To do this, the patient should learn to identify the factors that increase his/her pain and those that reduce it. It will then be easier to consider pharmacological and nonpharmacological measures to avoid, counter or attenuate them. With time, and with this knowledge in your back pocket, your doctor's visits may become less frequent.

Since it’s impossible for doctors to be continuously available, patients should, with time, become experts on their own pain. They should learn how to adjust their activities, keeping in mind the importance of not letting their pain overtake them. Feeling personally effective is an important value if one wishes to use personal means to fight against the pain (exercises, psychological approaches, etc.). Bad stress and catastrophization should be avoided, for they fuel pain and drag the fibromyalgia patient into a pain-amplifying spiral (pain - catastrophization - inactivity - pain amplified).

Given that the intensity of the pain fluctuates over time in most fibromyalgia patients, it would be dishonest to say that a given drug provides the same level of relief at all times. The same is true of any other therapeutic approach. However, if a drug is adjusted when the pain intensity is at its peak, it's possible that certain side effects (such as fatigue and dizziness) will appear when there is a lull in the pain. Conversely, when drug therapy is adjusted during "good" periods, that is, when there’s less pain, the patient should expect the treatment to be insufficient during exacerbations. These unavoidable pain cycles vary widely in frequency and magnitude from one fibromyalgia patient to the next. Treatments therefore need to be individualized for each patient, which requires knowing what his/her responsiveness and clinical condition are. Patients must be able to give their doctor⎯in a concise but precise manner⎯information about them so that they receive a treatment that is suited to them. This is part of the necessary collaboration between the patient and his/her doctor.

Generally, and from a pharmacological standpoint, the doctor would do well, at the start of treatment, to initiate a medication that significantly reduces pain by releasing its active substances in a continuous manner. For breakthrough pain, the same (or another) drug in a rapid-release form could be used temporarily on an as-needed basis. Patients are the ones in the best position to adjust their treatment upwards during pain spikes. This is why it's important that they be educated about their fibromyalgia and about when to add the as-needed medication. It’s the doctor's responsibility to contribute to this education.

I generally suggest to patients that they not read immediately the symptoms described on the drug information sheet that their pharmacist gives them. Often, the initial side effects will diminish over the following weeks (generally between 2 and 6 weeks). So, why read about all the side effects of a given drug right away? Isn't there a risk of bringing some of them on (nocebo effect)? There’s an increasing body of evidence suggesting that the nocebo effect is real, just like the placebo effect, and that some patients prematurely stop their treatment before they're able to experience its beneficial effects.

Lastly, the doctor might propose nonpharmacological approaches with or without concomitant pharmacological treatment. For example, psychotherapy (especially cognitive behavioural therapy) has been confirmed in a number of scientific publications concerning studies involving fibromyalgic populations. Patients shouldn’t view a referral for psychotherapy as an admission of giving up on the part of the doctor or as psychiatric stigmatization. In general, the purpose of referrals to psychology is to eliminate erroneous thoughts (those that make the pain worse) and to provide tools for fighting pain. In an ideal world, this would be done within an interdisciplinarily intervention framework where all aspects of the patient would be examined and addressed. The best way to help fibromyalgia patients is to work as a team, and, of course, this team includes the patient.

Can I reduce my pain by changing my diet?

Answer from Dr. Pierre Arsenault, Ph.D., M.D., CPI

Presently, some scientists believe that certain dietary adjustments could reduce the pain experienced by many patients. The two food groups most often cited are dairy and grain. In certain testimonials, completely abstaining from dairy products and products containing gluten showed a significant decrease in the intensity of pain for patients with painful osteoporosis. Some of these patients even claim that the pain has disappeared.

But what about other pain syndromes, such as fibromyalgia? There are presently no publications supporting this theory for fibromyalgia patients. Doctors therefore don’t have the basis to give recommendations for such an approach. They will, however, encourage any dietary behaviour that is in line with the main established dietary guidelines.

A few authors have mentioned the theoretical usefulness of a vegetarian diet in improving a fibromyalgia patient’s condition. The apparently antioxidant properties of such diets theoretically make them the diets of choice. Unfortunately, the studies that have investigated these diets are not concordant. Furthermore, it's possible that the observed benefits resulted more from weight loss than from these diets’ antioxidant properties, since it’s an established fact that many fibromyalgia patients are obese.

One of the things most often recommended in the lay literature is magnesium. Magnesium is a trace element that plays an important role in enzyme reactions, but also in a number of other body functions, such as pain. Indeed, certain membrane receptors in the spinal cord that are involved in pain (N-methyl-D-aspartate [NMDA] receptors) are partially blocked by magnesium. Some studies tend to show that magnesium might have certain pain-related benefits. Unfortunately, other studies have found magnesium to have no effect. Consequently, no recommendations regarding magnesium supplementation can be made at this time.

It should be noted from all these observations that the best diet for a fibromyalgia patient is the one that will provide a balanced intake of each of the main nutrients (protein, carbohydrates and fats) and of minerals. Food guides from government health agencies are designed to enable people to achieve this objective and stay within their daily calorie intake. It's important that fibromyalgia patients follow these recommendations if they don't want to increase their fatigue and if they want, as recommended, to undertake an appropriate physical activity program.

In conclusion, I would like to mention the main principles underlying good health. They apply both to healthy individuals and to fibromyalgia patients. Eliminate personal sources of intoxication (smoking, drinking, etc.), eat well (sufficient quantity and quality), manage your sleep well (see answer to a previous question), engage in a regular exercise program (ideally with the aerobic level as your target), and manage your stress well, avoiding distress and catastrophization.