Most people with fibromyalgia find that their emotions are more intense and harder to control than they were before they became ill. The technical term is labile.
©tugolukof / Adobe Stock
Adapted from an article by Bruce Campbell, PhD
To really help someone with fibromyalgia you need to know how fibromyalgia affects day to day living. And to know-how fibromyalgia affects day to day living, it is necessary to know what fibromyalgia is. Only then can you really help someone with fibromyalgia.
What is Fibromyalgia?
Fibromyalgia is a common medical condition affecting an estimated 10 million people in the U.S. and an estimated 3 to 6 percent of the world population. While the disease is most prevalent in women —75-90 percent of the people who have fibromyalgia are women —it also occurs in men and children of all ethnic groups. The etymology of “fibromyalgia rel=”noopener noreferrer nofollow”” comes from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia).
Fibromyalgia is typically characterized by fatigue and widespread pain. In addition to pain and fatigue, people who have fibromyalgia may experience a variety of other symptoms including: cognitive and memory problems (sometimes referred to as “fibro fog”), sleep disturbances, including sleep apnea, morning stiffness, headaches, irritable bowel syndrome, painful menstrual periods, numbness or tingling of the extremities, restless leg syndrome, and temperature sensitivity/sensitivity to loud noises or bright lights (otalgia/photophobia).
A person may have two or more coexisting chronic pain conditions. Such conditions can include chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, temporomandibular joint dysfunction, and vulvodynia. It is not known whether these disorders share a common cause.
The severity of fibromyalgia symptoms varies significantly from patient to patient. Some people with fibromyalgia continue to work, though a significant minority are unable to work due to the symptoms.
“I get so irritated with people who don't believe fibromyalgia is real ... People need to be more compassionate. Chronic pain is no joke”
Fibromyalgia affects day to day living
Many parts of a patient’s life are touched by fibromyalgia, including their relationships with those around them. Patients often struggle to control symptoms and to adapt to the limitations and stresses brought by their illness. Also, they must deal with loss, uncertainty, and often lack of understanding from others.
Family members also have to come to terms with loss in addition to taking on new responsibilities. There are usually financial consequences for families as many people with fibromyalgia stop working, reduce their hours, or retire early.
How to help someone with fibromyalgia
When thinking about how to help someone with fibromyalgia one of the most things to think about is keep it practical without neglecting the need to support them emotionally.
The critical fact about fibromyalgia is that the course of the illness, and the severity of symptoms, are affected by how a person lives his or her life. The effects are so high that changes in the person’s lifestyle are often the treatment of choice.
In the words of well-known fibromyalgia physician Dr. Charles Lapp, fibromyalgia is “best managed with adaptation and lifestyle changes…There is no drug, no potion, no supplement, herb, or diet that even competes with lifestyle change for the treatment of fibromyalgia.”
As a friend or family member of someone with fibromyalgia, how you interact with them will have a significant effect on them: you will either help them gain control over their condition or make attaining that goal more difficult.
The help you offer to someone with fibromyalgia is likely to bring benefits to you as well as to your loved one. For example, if you help your loved one to pace themselves, they are likely to have a much more predictable life. This helps reduce uncertainty for themselves and those around them.
They are also much more likely to be able to expand their activity level and therefore be able to do more without necessarily making their symptoms worse. And if you help them sleep better, they are less likely to be irritable and able to think more clearly.
But perhaps the most significant way you can help someone with fibromyalgia is supporting them to maintain their overall quality of life.
Seven strategies to help someone with fibromyalgia
Probably the most critical lifestyle changes for helping to control fibromyalgia symptoms, as well as increasing the likelihood of improvement is pacing.
Rather than fighting their body with repeated cycles of pushing themselves to the limit and then crashing, the person with fibromyalgia adapts to the limits the illness imposes on them. To put it simply pacing means reducing one’s overall activity level.
A pacing strategy can help someone with fibromyalgia live better with their condition. How much it can help often depends on the severity of the fibromyalgia symptoms but is usually between 50% and 80%.
Pacing also usually includes including regular rest periods into the day and other strategies such as having short activity periods; recognizing limits on the mental, social and emotional activity as well as physical; switching between high-intensity and low-intensity activities; and taking extra rest and reducing activity for vacations and other special events.
With pacing, people with fibromyalgia can live their life according to a plan, rather than in response to their symptoms. People with fibromyalgia find this approach gives them a better sense of managing their illness (as opposed to the illness leading them).
Learning to pace is a gradual process, usually taking a number of years and involving the use of multiple strategies.
To give an example of the value of pacing. One person in the ME/CFS and Fibromyalgia Self-Help Program reported that for several years she had week-long visits from her daughter and granddaughter that triggered relapses lasting up to six months. Since she learned to use pacing during the visits, her recovery time had been reduced to two days per visit.
Family and friends can help the person with fibromyalgia to adapt by accepting that they can do less than before. And by acknowledging that they will need to spend more time in rest and do things in new ways (such as alternating activity and rest).
Poor sleep is one of the most common and troublesome ways of how fibromyalgia affects day to day living for someone with fibromyalgia. Patients often experience sleep as unrefreshing. They may spend a night in bed but wake up as tired as before. Other sleep problems are common as well, such as difficulty getting to sleep, waking in the middle of the night or early in the morning, and oversleeping.
To help someone with fibromyalgia, it is important to develop a sleep management plan, especially if you are sleeping in the same bed. A sleep management plan usually includes a combination of strategies from three categories:
1. Sleep environment and habits
3. Sleep disorders
Sleep can be improved by having an environment conducive to sleep and by having good sleep habits, such as a regular time to go to bed each night. A comfortable sleep environment includes a good mattress and control of light, noise, and temperature.
Noise also includes snoring by the sleep partner. So, if this includes you, then it is best to seek treatment for the snoring or perhaps consider sleeping in a different room if feasible.
Medications are often used to treat poor sleep for people with fibromyalgia. Sometimes multiple drugs are used, such as one to help the person fall asleep and another to help her them asleep.
Third, sleep disorders are prevalent with fibromyalgia, affecting a majority of people with the condition, perhaps as high as 80%. Treating them can have a dramatic effect on symptoms.
Stress is a challenge for everyone, but it is especially difficult for people with fibromyalgia. The conditions add new stressors and also make people more vulnerable to stress. Fibromyalgia reset the physical basis of people’s “stress thermostat,” so that the effects of a given level of stress are higher than they would be for a healthy person.
The combination of additional stressors and increased vulnerability creates a double challenge: stress is multiplied at the same time that stress takes a more significant toll. Controlling stress, along with pacing and improving sleep, are probably the top three approaches for managing fibromyalgia.
One of the best stress management strategies is preventive: avoidance of stressful situations. This can include avoiding foods and other substances which trigger allergic reactions, and also avoiding or minimizing exposure to bright light, noise, and crowds.
Many people with fibromyalgia are selective about their exposure to television and movies, avoiding material that is emotionally arousing and shows with a rapid scene or sound changes. Excessive stimulation is one-way fibromyalgia affects everyday life for someone with fibromyalgia.
To help someone with fibromyalgia family and friends can help reduce their loved one’s stress by learning what factors create stress and working together to find ways to reduce or avoid them.
Help may include supporting the loved one in taking rests and leading a structured life, adjusting the diet to avoid allergic reactions, and limiting exposure to over-stimulating environments by visiting restaurants when they are not busy, or watching a movie at home rather than going to a movie theater.
Fighting the Fog (Cognitive Problems)
Most fibromyalgia patients experience cognitive difficulties, often called brain fog or fibro fog. These problems include confusion, difficulty concentrating, fumbling for words, and lapses in short-term memory.
One common technique for combatting fog is the use of lists and other reminders. People with fibromyalgia often post notes to themselves in places like the refrigerator, bathroom mirror, or the inside of the front door.
Most people with fibromyalgia feel confused by sensory input coming from several sources at one time and are therefore more likely to think more clearly if noise and light are at levels they can tolerate and if sensory data is limited to one source at a time.
To help someone with fibromyalgia, you are likely to have more productive discussions with if you talk in a quiet environment free of distractions, as well as be understanding if they are forgetful.
Another solution to sensory overload is to have an orderly physical environment. Removing clutter is a way to control brain fog by limiting sensory input. A related strategy is to live a predictable life using routines. For example, always putting keys in the same place and having meals at the same time every day.
A final strategy for reducing the effects of brain fog is to be sensitive to time of day. Most patients have better and worse periods during the day. Someone with fibromyalgia may be able to get twice as much done if they schedule activity for good hours of the day.
Managing Special Events
Anything out of the ordinary –a vacation, a holiday celebration or even having people over for dinner– creates a special challenge for people with fibromyalgia. These non-routine events require more energy than everyday life and can easily lead to a relapse. A need to plan for non-routine events is one way how fibromyalgia affects day to day living for someone with fibromyalgia and their family.
Family members and friends can help someone with fibromyalgia in their use of coping strategies to help reduce the physical toll at a special event.
The most effective strategy is to take more rest than usual, storing up energy by taking extra rest before the event, limiting symptoms by taking extra rest during the event, and taking whatever extra rest is needed afterward. The best way to help them through the event is to understand and accept their need for more rest.
The other two strategies people with fibromyalgia often use are to plan their participation in the event in detail, and to discuss plans with others. For travel, planning may include scheduling in advance the activities for each day of the trip. It might also mean using a wheelchair or motorized cart in airports.
The discussion involves sharing plans so all involved understand and have the opportunity to identify what tasks can be shared or delegated to relieve the burden on the person who is ill.
All these strategies imply that the person with fibromyalgia, who is now more limited, will probably have to change their role or level of involvement. And that’s okay. They might stop cooking the meal for a holiday celebration and instead ask other family members to cook.
Or they might go to the event but stay for less time than when they were healthy or change their level of involvement based on symptoms. On a trip, for example, they might opt out of some activities in order to take additional rest.
Most people with fibromyalgia find that their emotions are more intense and harder to control than they were before they became ill. The technical term is labile. As someone with fibromyalgia once said, “My emotions are much more sensitive than ever before. I cry more easily, and I have a less emotional reserve.”
One example of intense emotions among people with fibromyalgia is irritability. People with fibromyalgia can quickly feel frustrated, which often leads to unfortunate outbursts of anger that may be directed at those around them.
Experts advise patients to take help take responsibility for the problems their illness may create for others. If fibromyalgia affects their moods, they should use a time when they are feeling well to make a plan of things to do to help them feel better when their mood is low.
For example, they might plan to respond to feeling irritable by taking a rest (irritation is frequently triggered by overexertion), taking a walk or listening to music.
Making Dietary Changes
One way to help someone with fibromyalgia is to be aware of the frequent dietary changes are they will experience. Most people with fibromyalgia are intolerant of alcohol, and many are sensitive to caffeine and other stimulants; sweeteners such as sugar and corn syrup; food additives; and tobacco.
Food sensitivities or food allergies is yet another example of how fibromyalgia affects day to day living. About a third of fibromyalgia patients report food sensitivities or food allergies. Negative reactions include gastrointestinal symptoms such as heartburn, gas, nausea, diarrhea constipation, as well as an increase in their other symptoms such as headaches, muscle pain, changes in pulse, and fatigue.
Some familiar sources of food allergy include dairy products, eggs, soy, wheat, and corn. Often the solution is to eliminate a food or food group from the diet. Sometimes the patient’s diet is restricted to a limited number of foods, calling for family accommodation.
How people with fibromyalgia live their lives has a significant effect on their symptoms and quality of life. The best way for family and friends to help someone with fibromyalgia is to know how fibromyalgia affects day to day living and how they can adapt to support their loved one.
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