The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Research Team
2.3. Setting and Patients
2.4. Recruitment
2.5. Data Collection
2.6. Data Analysis
2.7. Rigor
2.8. Ethical Considerations
3. Results
3.1. Major Themes
3.1.1. Self-Imposed Duties
“I have to do it no matter what.”(P2, Group 1)
“If a report is to be finished or if a few people need to be called by tomorrow, I finish that report and call said people, I don’t go home without having done it.”(P5, Group 1)
“Everyone is focusing on work, but sometimes you’re home and there’s some things you can’t just leave undone.”(P1, Group 1)
“If your child is crying you have to pick them up, and you have to pick them up.”(P4, Group 1)
“You must finish ironing today, it has to be done no matter what, and nobody says that to me but myself.”(P8, Group 1)
3.1.2. Muscle Fatigue
“Tingling or numbness in the hands.”(P2, Group 2)
“I have to write a lot and my fingers get blocked, like my hands are clogged up and then I need to [gesticulates] do this, clench and unclench them until I can move them again.”(P9, Group 1)
“Sometimes I’m sewing a purse with my kid’s old trousers and I spend 3 days doing it, because while I’m at it my hands become numb and I need to stop doing it.”(P2, Group 2)
“I feel the same… I liked driving before… I could travel 300 or 400 km and now just 60 km make me tired. My hands and feet become numb and my head starts aching…”(P3, Group 2)
“As for me, it’s like numbness in the muscles, also pain, your muscles are clogged and muscle strength is lacking. Sometimes I’m on the sofa and the muscles start twitching on their own, like muscle spasms.”(P2, Group 3)
3.1.3. Overwhelming Feeling of Tiredness
“It’s exhausting.”(P5, Group 2)
“Some days I’ve been so exhausted from work that [I] said, ‘Okay, let’s take a nap,’ and then slept through all Friday evening and woke up directly on Saturday.”(P6, Group 1)
“That tiredness, for me, is corporal and it’s more like… being exhausted, when you sleep and sleep and you can spend three days sleeping and you’re still tired. You even get tired just walking a little to go to the restroom.”(P6, Group 1)
3.1.4. Difficulty Thinking
“You can’t think and you can’t hear, and everything’s gray—it’s like a mental fog.”(P2, Group 3)
“At a cognitive level, it’s like you’re blocked at some point and you don’t understand anything anymore.”(P5, Group 1)
“It’s like a mental fatigue.”(P6, Group 1)
“It’s exhausting, because it’s like my cognition doesn’t respond, my thoughts don’t flow correctly and I can’t advance.”(P4, Group 1)
“There was once a doctor who told me this is called fibrofog; we have so many thoughts because we want to encompass so many things that we get blocked and that’s all.”(P4, Group 1)
“You get blocked by that fibrofog, even a simple question like two plus two leaves you blank with no answer, because your mind gets blocked.”(P7, Group 2)
“Sometimes you don’t even know dates you had, all pictures seem the same…”(P8, Group 2)
“You stay blank, just like that. It’s like that fog… it leaves you empty and you don’t know what to write or how to do it.”(P2, Group 3)
3.1.5. Difficulty Concentrating
“Cognitive slowness.”(P5, Group 1)
“I can’t focus my attention long enough, so I’m usually slow doing those things.”(P9, Group 1)
“While I’m crocheting, I lose track of the holes and such and I need to undo it and the slowness is incredible.”(P9, Group 1)
“Just reading once before I managed to grasp the meaning of everything, but now I need to read and reread it at least 3 or 4 times to understand the sentence.”(P1, Group 3)
“I’m keeping the accounts of work and suddenly the numbers are like dancing and I can’t focus on them.”(P6, Group 3)
“While I’m reading a novel, sometimes I just pause and ask myself, ‘What happened to this character now?’ because I lose track of the plot.”(P2, Group 2)
“Before, I could read once what I was supposed to read and I could understand it, but now it’s like my mind gets blocked and I can’t seem to understand a thing… Maybe it’s just my mind.”(P7, Group 2)
“When you’re reading that, fibrofog is also there, prevents me from reading because I just finished reading the third line and I can’t remember what the first line was about.”(P1, Group 3)
3.1.6. Negative Emotions
“It is fatigue, you feel it in your chest, like pressure, more like anxiety.”(P1, Group 1)
“It leaves you restless.”(P4, Group 1)
“You feel overwhelmed, antsy, and tired… leaves you with a feeling of impotence”.(P1, Group 1)
“It’s despair.”(P9, Group 1)
“Disquiet, impotence”.(P1, Group 2)
“You manage your strength because you fear being unable to move the next day.”(P1, Group 2)
“You feel impotence because you know you can’t go further.”(P6, Group 2)
3.1.7. Lifestyle Changes
“I’ve moved on, I learnt to leave things undone when needed.”(P1, Group 2)
“I always took the car to wash, and now I tell my husband to help or to go himself.”(P8, Group 1)
“I wasn’t always sure what was a necessity and what was self-imposed. Before, I was vacuuming daily and now not so much. Also, before I was always alone shopping and now I take my husband along to help.”(P5, Group 1)
“If I’m too tired I sit on a bench and rest for a while before going home.”(P3, Group 1)
“I’ve learnt not to clean the windows daily, some days I do some chores and some other day I do other chores, I don’t tire myself so much now.”(P1, Group 2)
“Sometimes I organize chores and say, ‘Okay, tomorrow I need to be ironing shirts, then this other thing,’ and I plan beforehand so I don’t get overwhelmed with chores.”(P9, Group 2)
“Years ago, I went shopping once a week, but now I go more often and to smaller shops instead of a big shopping center.”(P1, Group 3)
3.1.8. Affected Everyday Activities
“Fatigue is tiredness, it is the inability to do anything, total weakness, not having strength.”(P6, Group 1)
“I get tired with any task, I don’t care if it is cleaning windows, and I feel frustrated because I know that I never finish anything.”(P8, Group 2)
“It causes me a lot of fatigue doing things… for example, making the bed”.(P5, Group 3)
“Every cleaning task and ironing is strenuous.”(P3, Group 3)
3.1.9. Lack of Motivation for Social Interactions
“As the party goes on, you slowly turn off and start to feel tired and then you’re wishing they go already.”(P6, Group 2)
“Slowly, we isolate ourselves, we have less social activity, because of tiredness, and it’s normal…”(P5, Group 1)
“It leaves you exhausted and you prefer doing less and less, because fatigue leaves you totally depleted.”(P2, Group 1)
“Sometimes you question if it’s worth it having a group of friends at all.”(P8, Group 1)
“I like having people in the house, but then I start feeling antsy…”(P6, Group 2)
“Yes, it leaves me restless, because I need to organize how many plates, glasses… and I start wondering how much left until they’re gone.”(P7, Group 2)
“As the event goes by you slowly fade out, you’re like a burning candle that starts dimming low, and then you feel bad because you were so eager to be here and now you’re wishing to go home…”(P4, Group 3)
3.1.10. Lack of Motivation for Daily Activities
“I have a Roomba and sometimes I’m too lazy to crouch down and turn it on.”(P4, Group 2)
“When you’re fatigued the first thing you lose is motivation, you don’t want to do anything, it’s like you’re flat tired.”(P3, Group 2)
“Yes, but the point is having motivation to go shopping, it’s true they send it home to you later, but…”(P1, Group 2)
“Just thinking I have to vacuum tires me, so I end up just sweeping the floor a little.”(P2, Group 2)
“I think technology is not advanced enough to help people with fibromyalgia, like… Let’s see… I hope you understand me, but… devices, yes, they’re not fit for people like us, they’re made for people who are alright.”(P6, Group 3)
3.2. The 4 U’s Rule
3.2.1. Unpredictable
3.2.2. Uncontrollable
3.2.3. Unseen
3.2.4. Unintelligible
4. Discussion
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Situation 1: You are making a work report, either typing or writing it by hand. The fatigue is increasing with time. It is expected of you to finish that report today. |
You think: It is more important to lower my fatigue now than to finish this report. |
Situation 2: You are cleaning the windows. As you clean, you become more fatigued. It is expected of you to finish cleaning the windows today. |
You think: It is more important to lower my fatigue now than to clean the windows. |
Situation 3: You are accounting for income and expenses. After two hours, the sum still does not add up and you are feeling more and more reluctant to finish it. It is expected of you to finish the calculations today. |
You think: It is more important to lower my fatigue now than to finish the calculations correctly. |
Situation 4: You are carrying the shopping bags. After a while, you are fatigued. It is expected of you to finish shopping today. |
You think: It is more important to lower my fatigue now than to finish shopping. |
Situation 5: You are vacuuming your home. While you are doing it, you start feeling fatigued. It is expected of you to finish cleaning your home today. |
You think: It is more important to lower my fatigue now than to clean your home. |
Situation 6: You are making a picture album either by hand or on the computer. As you are doing it, you start feeling fatigued. It is expected of you to finish the album today. |
You think: It is more important to lower my fatigue now than to finish the album. |
Situation 7: You need to sew something. As you are sewing you start feeling more and more fatigued. It is expected of you to finish sewing today. |
You think: It is more important to lower my fatigue now than to finish sewing. |
Situation 8: You are washing your car. As you are washing it, you start feeling more and more fatigued. It is expected of you to finish washing your car today. |
You think: It is more important to lower my fatigue now than to finish washing my car. |
Situation 9: You call some people to organize a date for a meeting. Due to the numerous calls you need to make, you are feeling more and more fatigued with each passing call. It is expected of you to finish arranging the meeting date today. |
You think: It is more important to lower my fatigue now than to arrange the meeting date. |
n | % | Mean | SD | |
---|---|---|---|---|
Age | 54.92 | 7.05 | ||
Diagnosis year | 12 | 7.40 | ||
Year Pain Began | 22.33 | 12.98 | ||
Pain Severity (0–10) | 6.53 | 3.28 | ||
Professional who Diagnosed | ||||
Rheumatology | 19 | 73.07 | ||
Traumatology | 2 | 7.70 | ||
Primary Care | 4 | 15.38 | ||
Others | 1 | 3.80 | ||
Civil Status | ||||
Married | 21 | 80.80 | ||
Separated | 2 | 7.70 | ||
Widow | 2 | 7.70 | ||
Single | 1 | 3.80 | ||
Employment Status | ||||
Employed | 14 | 53.80 | ||
Housewife | 5 | 19.40 | ||
Retired due to Pain | 3 | 11.50 | ||
Unemployed | 3 | 11.50 | ||
Retired Due to Other Circumstances | 1 | 3.80 | ||
Education Level | ||||
Primary Studies | 8 | 30.76 | ||
Secondary Studies | 13 | 50 | ||
University Studies | 5 | 19.40 | ||
Medication Use | ||||
Analgesics | 21 | 80.76 | ||
Antidepressants | 19 | 76.92 | ||
Muscle relaxants | 17 | 65.38 | ||
No Medication | 3 | 11.50 |
Antecedents | Behaviors | Consequences |
---|---|---|
Catastrophism. | Biological Fatigue: | Affected Everyday Activities. |
Lack of Energy. | ||
Overwhelming Feeling of Tiredness. | Affected Social Interactions. | |
Non-Restful Sleep. | ||
Not Proportional to Effort Exerted. | Lack of Motivation for Daily Activities. | |
Feeling Weakness/Heaviness. | ||
Muscle Fatigue. | Lack of Motivation for Social Interactions. | |
Difficulty–Slowness Doing Things. | ||
Lower Quality of Sleep. | ||
Cognitive–Emotional Fatigue: | ||
Difficulty Concentrating. | Lifestyle Changes. | |
Difficulty Remembering. | ||
Busy Schedule. | Difficulty Making Decisions. | Problems in Affectivity. |
Demanding Social Interactions. | Difficulty Thinking. | |
Family. | Difficulty Getting Motivated. | |
Self-Imposed Duties. | Negative Emotions. |
Category | Subcategory | Description | Example for Coding |
---|---|---|---|
Antecedents | Catastrophism | Negative vision of the world, which is seen as menacing [14]. | “Even if I am in bed I am still exhausted; I can’t move my arms, I can’t move my legs, I can’t move my body. My worst nightmare is being unable to walk because of this.” (P9, G1) |
Busy Schedule | Women with exacting standards about how they should lead their lives, filling their schedule with domestic chores, family care, and professional work [13]. | “Today I went shopping, needed to pick up my kids from school, needed to get lunch done…I’m just super tired.” (P2, G1). | |
Demanding Social Interactions | A negative appraisal of relationship engagement [12]. | “Your children think you’re below them, But no, not if I can’t, I can’t. Now everything that others demand from you, they demand constantly.” (P7, G1). | |
Family | Irritation or frustration among their family members, lack of understanding from them [8]. | “You try and try and still it seems wrong to them.” (P6, G3). | |
Self-Imposed Duties | Continue with work and home duties at the cost of her own health and well being [14]. | “If a report is to be finished or if a few people need to be called by tomorrow, I finish that report and call said people, I don’t go home without having done it.” (P3, G3). | |
Biological Behaviours | Lack of Energy | Low strength or vitality, having no energy to do things [11]. | “Sometimes I say, ‘I’m done’ and then save up my energy.” (P9, G1). |
Overwhelming Feeling of Tiredness | Tiredness that is persistent, unpredictable, and graver than normal tiredness [11]. | “Some days, I’ve been so exhausted from work that [I] said ‘Okay, let’s take a nap,’ and then slept through all Friday evening and woke up directly on Saturday.” (P6, G1). | |
Non-Restful Sleep | Feeling tired even after a good night’s sleep [11]. | “It doesn’t go away, even if you sleep or rest, you’re still tired.” (P5, G2). | |
Not Proportional to Effort Exerted | Being exhausted after doing hardly anything or becoming very tired doing very little [11]. | “You just walk a little to get to the bathroom and you’re already exhausted.” (P3, G3). | |
Feeling Weakness/ | A subjective sensation of the body being heavier or being weaker [11]. | “You feel the heaviness, you feel crushed.” (P3, G1). | |
Heaviness | |||
Muscle Fatigue | Decreased ability from the muscles to perform [11]. | “I have to write a lot and my fingers get blocked, like my hands are clogged up…” (P4, G3). | |
Difficulty– | Slowness and/or difficulty doing things [11]. | “I could make the bed in the blink of an eye, and now it’s 10 min…” (P9, G2). | |
Slowly | |||
Doing Things | |||
Difficulty | Difficulty focusing on reading or engaging in a conversation [8]. | “I’m keeping the accounts of work and suddenly the numbers are like dancing and I can’t focus on them.” (P4, G3). | |
Concentrating | |||
Difficulty Remembering | Difficulty to remember dates or what to buy [8]. | “Sometimes I don’t remember which medication I’ve taken.” (P7, G2). | |
Difficulty Making Decisions | Insecurity that fatigue might strike again because of its unpredictability [8] | “Making plans is difficult, you don’t know when you’re going to feel fatigued.” (P2, G1). | |
Difficulty Thinking | Inability to think clearly [11]. | “It’s like a mental fog.” (P1, G1). | |
Difficulty Getting Motivated | Lack of enthusiasm they need to overcome in order to do things [11]. | “You feel impotence and don’t want to continue doing it” (P3, G3). | |
Negative Emotions | Emotions such as despair, fear, anxiety… | “You feel desperate, it’s real despair.” (P4, G2). | |
Consequences | Affected Everyday Activities | Such as strenuous physical activities (e.g., playing sports, yard work), cognitive tasks (e.g., paying bills) and simple self-care activities (e.g., pouring a cup of coffee, getting dressed) [11]. | “Every task is tiring to me, be it cleaning the windows or vacuuming.” (P6, G2). |
Affected Social Interactions | Unpleasant social situations that resulted from the unpredictable nature of fatigue [8]. | “It’s exhausting, you get tired calling people and explaining why…” (P5, G1). | |
Lack of Motivation for Daily Activities | Perceived as more demanding. They tried to perform regular household chores, but often found that they could not manage to finish the work they started [8]. | “Yes, but the point is having motivation to go shopping, it’s true they send it home to you later, but…” (P3, G2). | |
Lack of Motivation for Social Interactions | Social withdrawal as a shelter against unpleasant social situations that increased stress [8]. | “Slowly, we isolate ourselves, we have less social activity, because of tiredness, and it’s normal…” (P5, G1). | |
Lower Quality of Sleep | They often wake up in the night or have trouble falling asleep because of pain and/or fatigue. They suffer from uncontrollable and sudden sleepiness; they have noticed an increased need to sleep [8]. | “I only sleep like a couple hours daily…” (P6, G1). | |
Lifestyle Changes | Changes in daily activities and priorities [8]. In addition, changes in their social networks [14]. | “Years ago, I went shopping once a week, but now I go more often and to smaller shops instead of a big shopping center.” (P1, G3). | |
Problems in Affectivity | Fatigue made them enjoy social activities less and increased their stress [12]. Strained family relationship [8]. | “Sometimes I’m cleaning the kitchen and I feel like I can’t go on, then I start crying a whole lot…” (P7, G3). |
Category | Name | Number of References |
---|---|---|
Antecedents | Catastrophism | 9 |
Busy Schedule | 2 | |
Demanding Social Interactions | 7 | |
Family | 6 | |
Self-Imposed Duties | 58 | |
Behaviours | Lack of Energy | 20 |
Overwhelming Feeling of Tiredness | 24 | |
Non-Restful Sleep | 4 | |
Not Proportional to Effort Exerted | 3 | |
Feeling Weakness/Heaviness | 16 | |
Muscle Fatigue | 26 | |
Difficulty–Slowness Doing Things | 6 | |
Difficulty Concentrating | 23 | |
Difficulty Remembering | 19 | |
Difficulty Making Decisions | 6 | |
Difficulty Thinking | 30 | |
Difficulty Getting Motivated | 1 | |
Negative Emotions | 35 | |
Consequences | Affected Everyday Activities | 12 |
Affected Social Interactions | 7 | |
Lack of Motivation for Daily Activities | 7 | |
Lack of Motivation for Social Interactions | 12 | |
Lower Quality of Sleep | 3 | |
Lifestyle Changes | 27 | |
Problems in Affectivity | 1 | |
Others | External Support | 3 |
Resources | 3 | |
Physical Symptoms | 9 | |
Sex | 4 |
Characteristic | Description | Example of Coding |
---|---|---|
Unpredictable | The unpredictability of not only fatigue, but also of its repercussions on life | “I was exhausted doing housework that I said never again.” (G2, P3) |
“With my tongue hanging out, I try to finish my work as well as possible. Then I end up crumbling and what do I do? Well, I lie down.” (G3, P8) | ||
“What fatigue is doing is that little by little we are becoming isolated, we have less social activity because that wears you out and you prefer to do less. You meet fewer times because of fatigue, because it exhausts you.” (G1, P5) | ||
“For me, what to do… I am so exhausted about… making calls and all that like following a WhatsApp group.” (G1, P7) | ||
“You have to do the report no matter what… so even if tiredness appears or you are fatigued, you have to finish it.” (G1, P2) | ||
“Because when I had the responsibility to work, I would go out at two in the morning and drag my body until two in the morning… and the next day, I couldn’t even get up.” (G2, P8) | ||
Uncontrollable | Symptom appears suddenly | “Although I am in bed, I am still exhausted; I can’t move my arms, I can’t move my legs, I can’t move my body…” (G1, P9) |
“Many times we do not know how far we can go until we really fall. As I say to my husband: ‘I can’t take it anymore,’ but when I say, ‘I can’t take it anymore,’ I mean I had stopped being able to a long time ago.” (G2, P8) | ||
“When I think that I have to do something is when I can’t, I start to get nervous and I know fatigue is coming.” (G2, P3) | ||
“You’re there both with fatigue and without fatigue… you throw yourself head long, which is what she says.” (G3, P6) | ||
“I am exhausted right now. My motor won’t start again. It doesn’t matter if I lie down.” (G1, P5) | ||
“It is a brutal muscular exhaustion that just appears.” (G1, P7) | ||
Unseen | The subjective experience that sometimes makes it difficult to verbalized and to be seen | “I mean sometimes I feel like I’ve aged 20 or 25 years in a matter of 2 years. It is as if my body is turning off due to the fatigue.” (G2, P5) |
“It’s not just the physical fatigue that bothers you, but the mental one, too.” (G2, P8) | ||
“As the event goes by you are exhausting, you are fading, you are reluctant… physically, mentally… It is like a candle, it is consumed and it is extinguished.” (G2, P6) | ||
“Fatigue is more physical for me and exhaustion is when you sleep and you sleep and you sleep… You can spend three days sleeping and you are still tired.” (G1, P6) | ||
“I can’t pay as much attention because of the fatigue, I mean it makes me cognitively slow.” (G1, P5) | ||
“You start reading and you have finished a paragraph and it gets foggy. By the third time you are going to start reading you no longer know where to start.” (G3, P2) | ||
“You go blank and you don’t know what you have to put or what you don’t have to put or how you have to put it.” (G3, P2) | ||
Unintelligible | Lack of understanding | “It happens to me many times… to speak, I think of something, I am going to say it and I just can’t get out what I want to say, and I say to myself: ‘Am I stupid or what is happening to me?’” (G2, P6) |
“The truth that also happens to me. I go to any store and I have to choose between a lot of products and I become blocked automatically and people are surprised.” (G3, P5) | ||
“At the cognitive level, there comes a time when there is a blockage and they do not understand it. I mean, uh… it doesn’t matter, it’s that they don’t understand it and they don’t see it…“ (G1, P5) | ||
“Your children, who think you are beneath them, but if I can’t, I can’t. To everything that others demand of you. They demand a lot from you…” (G1, P7) | ||
“because if there is no environment that supports you, then you just have to f***ing do it”. (G1, P6) | ||
“It is expected of you that you have to finish it, and without excuses you have to finish it, above all.” (G1, P7). |
© 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
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Velasco-Furlong, L.; Gutiérrez-Hermoso, L.; Mateos-Pintado, B.; Castro, D.G.-d.; Blanco-Rico, S.; Sanromán-Canelada, L.; López-Roig, S.; Pastor-Mira, M.Á.; Peñacoba-Puente, C. The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study. Int. J. Environ. Res. Public Health 2020, 17, 6224. https://doi.org/10.3390/ijerph17176224
Velasco-Furlong L, Gutiérrez-Hermoso L, Mateos-Pintado B, Castro DG-d, Blanco-Rico S, Sanromán-Canelada L, López-Roig S, Pastor-Mira MÁ, Peñacoba-Puente C. The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study. International Journal of Environmental Research and Public Health. 2020; 17(17):6224. https://doi.org/10.3390/ijerph17176224
Chicago/Turabian StyleVelasco-Furlong, Lilian, Lorena Gutiérrez-Hermoso, Beatriz Mateos-Pintado, Daniel Garvi-de Castro, Sheila Blanco-Rico, Lucía Sanromán-Canelada, Sofía López-Roig, María Ángeles Pastor-Mira, and Cecilia Peñacoba-Puente. 2020. "The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study" International Journal of Environmental Research and Public Health 17, no. 17: 6224. https://doi.org/10.3390/ijerph17176224
APA StyleVelasco-Furlong, L., Gutiérrez-Hermoso, L., Mateos-Pintado, B., Castro, D. G.-d., Blanco-Rico, S., Sanromán-Canelada, L., López-Roig, S., Pastor-Mira, M. Á., & Peñacoba-Puente, C. (2020). The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study. International Journal of Environmental Research and Public Health, 17(17), 6224. https://doi.org/10.3390/ijerph17176224