Background
Methods
Participants
Procedure
Survey measures
Background information
Assessment of current FM symptoms
Focus group
Data analysis
Results
Demographic and clinical characteristics
Variable | Mean (SD) or N (%) |
---|---|
Age | 29.9 (1.5) Range: 26.7–33.9 |
Sex (% female) | 14 (100.0%) |
Race | |
White | 12 (85.7%) |
Black | 2 (14.3%) |
Ethnicity | |
Hispanic/Latinx | 1 (7.1%) |
Non-Hispanic/Latinx | 13 (92.9%) |
Marital status | |
Single | 7 (50.0%) |
Married | 7 (50.0%) |
Living situation | |
With parents | 3 (21.4%) |
With roommates | 1(7.1%) |
With spouse | 7 (50.0%) |
With a boyfriend or girlfriend | 1 (7.1%) |
Alone | 2 (14.3%) |
Highest level of education | |
HS diploma or GED | 1 (7.1%) |
Vocational/ trade/ associate’s degree | 1 (7.1%) |
Some college | 2 (14.3%) |
BA or 4-year college degree | 7 (50.0%) |
MA or professional degree | 3 (21.4%) |
Work | |
Full-time | 9 (64.3%) |
Part-time | 3 (21.4%) |
Not currently employed | 2 (14.3%) |
Annual income | |
< or = $30,000 | 5 (35.7%) |
$30,001 – $50,000 | 4 (28.6%) |
$50,001 – $75,000 | 2 (14.3%) |
> $75,000 | 1 (7.1%) |
Declined to answer | 2 (14.3%) |
Children (% yes) | 6 (42.9%) |
Variable | Mean (SD) or N (%) |
---|---|
Met criteria for fibromyalgiaa | 12 (80%) |
Widespread pain index (WPI) | 11.3 (4.0) |
Symptom severity scale (SSS) | 7.9 (2.5) |
Average pain intensity (NRS 0–10) | 3.4 (1.4) |
Current healthcare services (% yes) | 8 (57.1%) |
Physical therapy | 3 (21.4%) |
Psychotherapy | 4 (28.6%) |
Other (massage, chiropractic) | 5 (35.7%) |
Current medication for pain/ FM sx (% yes) | 4 (28.6%) |
Current medication for mood sx (% yes) | 7 (50%) |
Thematic analysis
Theme | Code | Example Quote |
---|---|---|
Learning to live with fibromyalgia by embracing the growth mindset | Altering expectations | “Now that I am in a position where I am working from home, I can set my own schedules, set my own pace … I definitely feel like it’s been so much more manageable.” |
Actively seeking out answers | “It definitely was a trial and error period of seeing what actually did help outside of medication.” | |
Self-advocacy | “I’m a very independent person by nature. But, obviously, there are situations when I absolutely cannot do something or just need help. And so I feel like I have gotten a lot better about asking for help when I need it.” | |
Empathy for others | “It really gives you pure empathy for other people who are suffering.” | |
Benefit finding | “It’s also made me appreciate small things.” | |
Self-compassion | “Patience for myself and for other people around me, or like not being too hard on myself.” | |
Managing FM holistically | Finding effective non-pharmacological interventions | “Just emphasizing that it is multi-faceted. You can’t just tackle one side of it, you have to come around and take a holistic approach.” |
Education on the mind-body connection | “It was that explanation [of the pain gate, pain-stress cycles,] that kind of helped things click for me.” | |
Helpfulness of mental health treatment | “The therapist really helped me realize that it doesn’t matter if I resent my body. It’s still my body, and I’m going to have to make it work.” | |
Exercising to manage symptoms | “Now I’m better at getting that sweet spot of moderate exercise that helps with all the stiffness, and stuff that doesn’t make me flare up because I overdid it. | |
Perseverance | JFM is not the end | “There was no diagnosis that was going to stop me.” |
Internal resolve to prove capability | “I’m an adult, so I can deal with it.” | |
Social support and validation | Relief with diagnosis | “I would have constantly wondered what’s wrong with me.” |
Validation from others | “You kind of want that explanation or validation like, ‘No you’re not crazy. There is something wrong.’” | |
Support from others | “Surround yourself with people who are going to keep pushing you, because there are days that you can get really down and out. You need those people to pull you out of it.” |
Theme | Code | Example Quote |
---|---|---|
Unequipped to deal with long-term, complex nature of FM | Delayed acceptance of diagnosis | “It wasn’t until probably I was about 28, did I really start to be like, ok, this is obviously going to be with me for the rest of my life.” |
Difficulty of teenage years | “As a teen, I thought my life was over.” | |
Dealing with depression and anxiety | “I have pretty bad anxiety. I struggled with depression throughout college.” | |
Fatigue symptoms need more attention | “The pain I can kind of mitigate, though I’m not the best at it, but the fatigue overrides everything.” | |
Long-term impact on life | “It is multifaceted. We do need to encourage our patients to – you know, they will have to change their entire lives.” | |
I wish I knew more when I was younger | “It wasn’t until college that anyone sat down and talked to me about pain management strategies.” | |
Inadequate support and stigma | Negative stigma associated with diagnosis | “I had to hide it.” |
Burden on others | “Because I couldn’t do anything, I was dependent on everyone. There was so much pain, and I wasn’t able to keep myself distracted … I couldn’t even care for my son.” | |
Social isolation | “I got to a point where I got too exhausted to really have friends. | |
Poor parenting (poor mental health, overprotective parenting) | “My parents want to kind of put me in a bubble at this point in my life and not let me do anything. ‘You’re gonna hurt yourself.’” | |
Negative healthcare experiences | Dismissive providers | “I was tired of getting the look, like, ‘Oh, you sure?’” |
Medication was not the only answer | “For basically all of high school, it was, ‘You have this disease, you’re going to be in pain pretty much every day for the rest of your life. … here’s some Cymbalta ..’ And that was not super helpful. Especially to a teenager who has so much else going on, too.” | |
Poor access to quality care | “My doctor didn’t really understand how to manage my condition, because he didn’t really understand it either.” |