Many people will need to make a decision about work. Some people may be able to continue performing their job as they did prior to their diagnosis, but for others, this does not work.
Fibromyalgia is covered under the Americans with Disabilities Act , so your employer is usually required to make reasonable accommodations. Your employer may have a long-term disability program, and there are sometimes other disability programs for which you may qualify. If this sounds like you, learn more about fibromyalgia and qualifying for SSD. Your sleep patterns may keep you from remission in more than one way.
Some people with fibromyalgia suffer from sleep apnea. Sleep apnea is considered a possible cause, as well as a contributing factor to fibromyalgia, and many people are unaware they have this condition.
If you have been told that you snore, or find yourself frequently awakening with a gasp, talk to your healthcare provider.
A sleep study is used to diagnose obstructive sleep apnea. If it's present, treatment such as CPAP can be extremely helpful with symptoms and also reduce your risk of complications.
Insomnia is common with fibromyalgia as well. If you are suffering from insomnia, it's important to realize its importance, and that it is not simply a nuisance. A number of treatment approaches may help, with cognitive behavior therapy, stress reduction, and even medications sometimes needed.
Many people living with the condition as well as some researchers feel that supplements for fibromyalgia can help improve symptoms and bring you closer to remission. This research, however, is in its infancy, and it's important to find a healthcare provider who can work closely with you. Healthcare providers can vary in their understanding of fibromyalgia, so try to find a healthcare provider who has a special interest in treating this condition.
Someone who is familiar with the current research can help educate you about what we know while we wait for more definitive answers. Supplements are often chosen with specific symptom subgroups in mind. For example, you may wish to try supplements that help with energy, immune function, pain control, sleep, mood disorders, or brain function, depending on the symptoms you are coping with.
A few of the supplements more commonly used include Rhodiola rosea, theanine, Omega 3, carnitine, vitamin D, vitamin B complex, lysine, magnesium, milk thistle, and turmeric. In addition to finding a healthcare provider skilled in the use of supplements, buying good quality products is essential, as these remedies are not well regulated in the United States.
It's also important to be aware that supplements may interact with prescription medications, and both your healthcare provider and your pharmacist should be aware of any nutritional supplements you are taking. The list of prescription medications for fibromyalgia is growing and includes both medications specifically approved for fibromyalgia and those that are used primarily to treat symptoms.
While medications may be helpful, they work best when combined with other modalities of treatment. Painful periods are common with fibromyalgia and can add a monthly worsening to the already present pain.
Some people find that their fibromyalgia flares follow their hormonal cycle, beginning at ovulation and tapering off during periods. Painful and erratic periods are also common. Treatments ranging from hormonal therapy to endometrial ablation may be used to control symptoms. As difficult as it may seem at times, a final practice many people with chronic diseases find helpful is expressing gratitude. Some people keep a gratitude journal or try to write down two or three positive things that happen each day.
Some days your list may only include brushing your teeth, or the fact that no bills came in the mail. While we have no specific studies looking at gratitude and fibromyalgia symptoms, we do know that gratitude can reduce stress, and stress is a common trigger for flares.
No single treatment works for everyone, and achieving remission from fibromyalgia usually requires a variety of methods and lifestyle measures. Fortunately, ongoing research may guide us in more promising directions in the near future. Learn about treatment and lifestyle changes to cope with fibromyalgia and chronic fatigue syndrome.
By Friday? It's not pretty. When your routine is enough to drag you down, you don't have the reserves to deal with anything else on top of it. Who hasn't been there? Halfway through the week, you have to deal with some kind of crisis that gets your adrenaline pumping. Now you have more to recover from. Any of our symptoms can flare up after a stressful or strenuous event. The most common ones include:. It's likely not realistic for you to just go to bed for two days after every workday, or every stressful event in your personal life.
What we can do, though, is recognize what circumstances are likely to trigger a need for recovery and plan accordingly. For instance, don't do anything for the two days after a major holiday.
When possible, schedule time off after big events you know are coming. If you have some flexibility in your work schedule, you might want to consider a day off in the middle of the week so you can do some recovering before jumping back in. Taking more breaks may also prevent you from needing as much recovery time. When you can't schedule an actual recovery period or rearrange your life around your chronic illness, make sure to pare down as much as you can. Order groceries online rather than trying to shop near the end of your workweek.
Can someone else get your kids to soccer? Can your kids help more around the house? What jobs can you delegate to someone else? Call in the reinforcements. You may also benefit from getting extra rest before a big event. That could help your body get through whatever is coming a little better, which might speed up your recovery time.
By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency. To our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process.
PROP is found to be meaningful and to work by patients and clinicians. Peer Review reports. Fibromyalgia FM is a prevalent condition characterised by long-term widespread musculoskeletal pain associated with excessive fatigue and non-restorative sleep [ 1 , 2 ].
Patients also report several other complaints such as headache, irritable bowel, depression and cognitive problems [ 3 ]. The aetiology of FM is unknown, but its pathogenesis is ascribed to amplification of pain impulses within the central nervous system [ 4 ].
Additionally, findings of neuroendocrine perturbations suggest dysfunctional responses to stress [ 5 ]. FM has considerable social impacts as symptoms disturb ordinary functioning at home, work and leisure time, as well as social relationships [ 6 ]. During the clinical diagnostic process, patients are examined to rule out other diseases such as neurological, metabolic or rheumatic inflammatory diseases, which is why patients are often referred to various medical specialists [ 8 ].
In this process, patients experience that health professionals HPs consider their symptoms to be imaginary or psychological, and this continues even after being diagnosed. This highlights that the FM diagnosis is contested and does not necessarily legitimate patients as being sick [ 8 ]. In addition, it is not known how the biological abnormalities can be reversed; therefore, treatments aim at relieving symptoms, educating patients how to cope with them and promoting a healthy life style.
The guidelines build on systematic reviews of effect studies and were authored by a group of 18 members, including patients, researchers and HPs with background in various medical specialties and nursing. The group underlined the importance of a prompt diagnosis and informing patients about the condition. For management, they primarily recommended non-pharmacological therapies.
Their first choice was conditioning exercise as they had found strong evidence that exercise relieved pain and improved physical functioning. Although the group found their other recommendations to be based on weak evidence, cognitive behavioural therapy was advocated for patients with low mood and inadequate coping strategies, and more generally, multicomponent therapies, acupuncture, hydrotherapy, meditative movement therapies qigong, yoga, tai chi were proposed.
Duloxetine, pregabalin and tramadol were authorised by the group for patients with severe pain, and amitriptyline, cyclobenzaprine and pregabalin for those with sleep problems. However, both non-pharmacological and pharmacological therapies show only moderate, short-lasting symptom-relieving effects [ 11 ].
Thus, there is an urgent need to rethink and develop new interventions. In the present study, a multidisciplinary team of HPs, a leader of a rehabilitation unit and researchers collaborated in developing a new patient education programme.
The HPs had several years of experience of delivering a patient education programme in line with the EULAR guidelines, but they were uncertain as to whether the effects anticipated by the EULAR group were met and of their particular roles in the existing programme.
The leader experienced that the programme lacked a shared vision and understanding of FM, and she questioned whether the profession-driven education in symptom management and healthy lifestyle met its claims of being person-centred. With the various critical questions as a backdrop, we initiated a project in collaboration with clinicians to improve the existing patient education program. The project was inspired by the idea of co-producing knowledge [ 18 ], aiming at closing a theory-practice gap by bridging research-evidence and clinical context-specific knowledge, i.
This collaboration process resulted in a quite different patient education programme than the original one. Our main purpose presently is to describe this new patient education programme.
Patients were not involved in developing the new patient education programme. Such experiences can include alienation from own body, disrupted ordinary life, removal from social roles and obligations, and disturbed relationships with family, work colleagues, and friends [ 24 ].
It is essential to make sense of the new situation and find practical solutions for managing the problems illness creates socially [ 25 ]. Therefore, recovering from illness includes making sense of what is happening and discovering how to recreate a dignified life within the limitations set by the disease [ 26 ]. Opposite to illness is wellness, which may alternate between being in the foreground or background [ 27 ].
Such shifts imply that patients must work on their illness experiences in order to keep wellness in the forefront. Hope fuels such recovery efforts and progress motivates further actions [ 28 ].
In FM, multiple unfamiliar bodily sensations separate the person from the body and the daily life they used to know; their own body has become a stranger and an object for scrutiny that disturbs social life in various ways [ 29 ].
For example, work is complicated by memory and concentration problems [ 30 ] and exercise by post-exertional malaise [ 31 ]. The severity of symptoms fluctuates, often without any apparent reason [ 32 ]. Thus, the body can no longer be taken for granted and trusted, and this brings about worry and uncertainty [ 33 ]. Patients carefully monitor their body and take action to avoid intensification of symptoms [ 34 ] by finding out what triggers symptoms and by adjusting their behaviour and life accordingly [ 32 ].
Activities are planned on a day-to-day basis, and plans and everyday routines are often disrupted. As put by McMahon et al. The distress is further accentuated by inability to fulfil social obligations, social roles and relationships [ 34 ]. They can be seen as hypochondriacs and not doing their best to recover [ 8 ]. The patients mourn over their losses and wish to get their prior lives back [ 36 ].
Through a rather mundane daily trial and error process to find appropriate solutions, they developed personal competence that enabled them to slowly overcome FM [ 37 ]. The progress was hardly noticeable, but over time they recognised improvements that created hope for a better future [ 17 ].
They interpreted symptom flares as a warning of accumulation of too much stress over time, which helped them to make appropriate adjustments [ 15 ]. Wentz [ 38 ] and Sallinen et al. In sum, these studies suggest that patients may recover from FM by acting on their illness experiences by considering them in light of stress intolerance.
A participatory action research design was applied [ 40 ]. This design includes a spiralling process of alternating between critical reflections, actions, systematic data collection and analysis, trying out if solutions work in practice, and bringing new insights into the further development process.
A multidisciplinary clinical team, an administrative and clinical professional leader, and two researchers AMM, MHS collaborated in developing a clinically usable programme [ 18 , 41 ].
The process was implemented in a flexible but systematic manner. The HPs and patients were given oral and written information about the purpose of the study and the right to withdraw without any consequences for future career or treatment at the hospital.
Informed written consents were obtained and the Norwegian Data Inspectorate for Research approved the study no. Since the s, a multidisciplinary team at the Hospital for Rheumatic Diseases in Lillehammer, Norway, has offered a patient education programme for ambulatory and hospitalised patients with FM.
Currently, a team of 12 to 14 HPs with background in medicine, nursing, nutrition, occupational therapy, physiotherapy, psychology, and social work was involved in the development of a new programme. Most of them have worked for many years with chronic pain patients at the hospital or at other clinics, and several of them are educated in counselling pedagogy.
Two researchers with prior clinical experience as physiotherapists in mental health, primary health care, and rheumatology guided the work. In their own research, however, they maintain a specific interest in FM. Coproduction of knowledge entails a new approach for knowledge development [ 41 ] based on the view that together, people with various perspectives and knowledge who collaborate on equal terms can produce new and better knowledge to solve clinical challenges.
Thus, coproducing knowledge aims at developing a collective wisdom, and it was presumed that this would result in a practice for which HPs have ownership [ 42 ].
Five full-day workshops were arranged at the hospital over a four-month period. The workshops served as an arena for the participants to express ideas, share experiences, and search for further insights.
In the workshops, the clinicians compared their experiences with those reported by patients, first in a plenary brainstorming session and then in small groups of 5 to 7 participants to dwell in more depth on issues raised during the plenary discussions. The researchers moderated the discussions and asked questions to clarify what was said [ 43 ].
During the plenary discussions, one of the researchers took notes, and the small group discussions were tape-recorded. Immediately after the workshop, the researchers read the field notes, listened to the audio-recordings, and summed up the reflections.
In this process, practice and research evidence were merged to come to an overall understanding about what is at stake for patients with FM, how patients can engage in their own recovery process, and how HPs can provide appropriate help. Theoretical interpretations of disease, illness, recovery, and health helped us to make sense of and systematise the data. Summaries and preliminary interpretations were developed and presented orally at the next meeting. In order to find out how the programme was perceived and if adjustments in the programme were needed, both patients and HPs were interviewed.
The feasibility of the PROP was addressed by focus group and individual interviews with HPs who delivered the programme and with patients who had participated in the programme. The interview addressed three pre-planned themes; the meaning, relevance and delivery of PROP.
At the time of the first interviews, everyone had participated in developing the PROP, while after 1 year, two team members with experience in delivering but not developing the PROP were also interviewed. After 1 year, the HPs were interviewed individually by the last author and a research assistant both females inspired by narrative methods aiming to understand their experiences of delivering the PROP as a process evolving over time [ 44 ].
They were asked to tell about their experiences working with patients with FM and to deliver the PROP, and throughout this story-telling they addressed how it was like before, how it had changed over time, and how it was like today for details, see supplementary material. Immediately after completing the course, all eight patients from the first PROP group participated in a focus group interview lead by the first author that did not know the patients at beforehand.
But the participants knew the purpose of the study and why they were interviewed. In addition, four from the two first groups were interviewed individually. In these interviews, the following pre-planned themes were addressed; relevance and meaningfulness of the programme, as well as the content, structure and delivery of the PROP.
About 1—1. Nine female and two male patients, mostly in their 30s and 40s, volunteered for individual telephone interviews; three of them also participated in the first interviews. Everyone had experienced symptoms of various severity for years. Some were diagnosed several years ago and others recently. In the follow-up interview, they were asked to tell freely about a process from what had happened before the PROP, after it, and what their situation was at present in line with narrative interviewing [ 44 ].
The purpose was to learn about their personal illness and recovery process to find out if eventually the PROP had any impact for their process. The interview guides for the focus group interviews and the individual interviews are shown in the supplementary material. The interviews with HPs and patients were tape-recorded and transcribed verbatim. Both senior researchers listened to the recordings and discussed the meanings of them afterwards.
The text about the PROP and its relevance was extracted, coded and sorted into categories according to thematic analysis [ 45 ]. However, presently only the overarching preliminary findings are given in order to provide an argument for the feasibility of the PROP in our setting, and therefore, why it was worthwhile to provide a detailed description of the PROP.
However, it was unclear how the various components corresponded to FM and how the components were related to each other. In other words, an explicit theoretical understanding of FM and an overarching purpose of the programme were lacking.
Thus, we had to provide a theoretical justification for the PROP and link its contents to an explicit purpose. The ICF is based on a biopsychosocial understanding, illustrating that health is constituted through complex, dynamic, interactions between biological, psychological and social dimensions [ 47 ].
Accordingly, FM can be interpreted as being wound up by interactive processes between biology, psychology, and social problems Fig. Much research suggests that for a person with FM, it is distressing that FM is an unexplainable and unpredictable illness which interferes with participation and relationships in social life while being, at the same time, a socially contested illness [ 32 ].
Furthermore, this stress can be accentuated through social stressors such as high mental and physical demands, exhaustive care giving, familial conflicts, and job dissatisfaction [ 48 ]. The biological stress response system is mobilised through activation of the hypothalamic-pituitary-adrenal HPA axis and the autonomous nervous system [ 50 ]. In FM, altered responses of the autonomous nervous system to stressors such as exercise [ 51 , 52 , 53 ], ice water [ 54 ], and tilting [ 55 ] are reported, as well as blunted cortisol responses in the HPA axis [ 5 , 48 , 56 ].
It is also reported that premorbid stress in the form of an intensive lifestyle may lead to the onset of FM [ 57 ], and symptoms are intensified by overdoing, mental and physical stress [ 58 , 59 ].
We therefore argue that life stress, as a sum of stress related to FM and generally in life, may hinder recovery from FM. This understanding underpins why the PROP is tailored to modify life stress. Our starting point is that it is crucial to make sense of FM and how it intertwines with daily life, and thereafter, modify stress by taking practical steps to adjust life and by challenging unhelpful beliefs and attitudes Fig.
Issues addressed by the patient-centered recovery-oriented programme for patients with fibromyalgia. However, the HPs recounted that several patients had told them that they had often been ignored, neglected or treated badly by professionals in primary health and social services. The HPs felt updated by participation in conferences and following evidence-based management guidelines.
At the same time, they felt that their knowledge fell short. The professionals trusted the research-based recommendations but were uncertain of whether they achieved symptom relief and improved physical functioning as outlined in the EULAR guidelines [ 10 ].
A dilemma was that the patients did not always follow their recommendations, and the HPs were uncertain of how to best motivate patients to adhere to them. Nevertheless, the team felt that they made a difference to patients, and perceived that patients found it important to share their experiences and learn from peers and HPs.
However, it was difficult to explicate why and how this played a role. Sharing experiences was carried forward from the prior programme and became an important ingredient in the PROP to enable patients to find out how to get better. The PROP takes this further, as person-centredness is now connected to engaging individuals in their recovery process by acting upon own experiences.
Corbin and Strauss [ 60 ] outline that people with long-lasting illness have to perform three interacting lines of recovery work: illness trajectory work, everyday life work, and biographical work. In order to make sense of illness experiences, discover possible solutions and try out and acquire new experiences, clinicians provide introductory information about predefined issues for further reflections in the group Table 1.
To facilitate reflections, HPs use practical exercises in plenary or small groups inspired by confluent pedagogy [ 61 ], exemplified in Table 1. To maintain motivation to carry on, patients learn to recognise and acknowledge their progress.
The seminars were led by two clinicians. During the project, the PROP was delivered for four groups of patients; comprising in total 41 patients. Their characteristics are shown in Table 3. There was a great heterogeneity among the participants with respect to age, educational level, employment status, duration of pain, and time since diagnosis.
Most of the participants, however, were females, and the FM severity score frequently was graded as very severe. Only one patient did not complete the PROP. The reason was that she was offered another service she expected to be helpful. She volunteered for an interview after one year.
The theoretical rationale for tailoring the PROP to modify life stress was found meaningful by both the patients and the HPs, and the content was found relevant and clearly nested in the overarching purpose. The patients felt acknowledged by the HPs and trusted their skills. Some patients disliked exchanging experiences with peers. Others found such exercises valuable as it distanced them from their own challenges.
They did not always agree with the suggested solutions, but found it helpful to rethink them. During the focus group, some patients expressed that it was impossible to do anything about their life situation. In particular, this was expressed by those with high burdens of care for disabled children or old relatives.
Thus, it was later emphasised by the HPs that even small changes in life situations could make a difference. In other words, it was not only about prioritising activities and routines, but also discovering how small adjustments could be made within particular habitual daily situations; for example, by taking small breaks or alternate between energy-demanding and less demanding activities.
For their part, the HPs reported that some patients did not join the exercise classes, especially those arranged in the gym. In an individual interview, a patient told that she hated gym at school, but during the PROP, she discovered that her headache disappeared during an outdoor walk which incorporated body awareness and relaxation exercises.
Thus, she felt that this, and not training, was right for her a practice still sustained after 1. This reminded us that stress can be modified by physical activity, body awareness, relaxation, meditative exercises as well as nature.
The HPs agreed to consistently use the term physical activity instead of training in the following courses. Both HPs and patients found the course days too long; accordingly, in the following courses they were shortened from seven to six hours. Even though the participants took part in the PROP 1—1. They had also recommended the PROP to their family physicians and acquaintances.
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