1: Personality

From the start of the focus group discussions, I observed two areas of similarity in participants’ personality traits. Firstly, participants came across as proactive, determined and driven, with a thirst for knowledge, research, and learning:

Constantly striving for answers about our health, with this sort of perfectionist, driven personality, is another source of mental and physical stress, adrenalin and cortisol surging about our bodies as we determine we WILL solve this problem and find answers! (F)

…the fibromyalgia sent me into a ‘typical’ ADHD hyper-focus research mission. When the consultant said “let’s not worry about what caused it let just treat the symptoms” my scientist mind was like well that’s the most ridiculous statement I’ve ever heard. (T)

…her hyperfocus (and mine with work) will mean that we plough on past the point it would [be] a healthy place to stop thereby exacerbating an already exhausted mind/body. My daughter will swim just because she’s set herself a goal (e.g. this summer it was 100 lengths before she’d get out of the pool – she was 9). (L)

Secondly, participants appeared to have similar ADHD profiles as they all described how they would ‘mask’ both their ADHD traits and fibromyalgia in order to fit in and please others:

My mouth has said what I think others need to hear before my brain is even aware. (B)

Since my diagnosis I notice I really work hard to mask my ADHD tendencies in work meetings. It is exhausting. (T)

When I say I ‘mask physical symptoms’ I’m thinking of how I “hold it all in” – it feels like I hold my muscles tense to try and stay still, when I would otherwise want to be fidgeting or moving about because of ADHD inability to be still and because fibromyalgia muscle pain/tension makes me want to do “weird” looking exercises and stretches. Also pushing on and doing things I know are going to cause me (more) pain and fatigue. (F)

However, participants described their relatives who have ADHD, but not fibromyalgia, as having very different ADHD profiles:

…my sister’s got ADHD… erm… but her ADHD presented much differently… she is much more typically…erm… quite erm… she’s a bit more aggressive she’s a bit more… she doesn’t try and please anybody she’s like… she… she’s much more what you would… some people would feel is stereotypically ADHD…(B)

Although my sister is, I theorize, more "fawn" than "fight or flight" and therefore maybe doesn't have the muscle tension I do, she is NOT laid back and relaxed! I think somehow my "fight or flight" in part makes me/is caused by me, standing up for myself, and learning to be more assertive and set boundaries and all that, versus my sister letting people manipulate her and do emotional blackmail on her, and she has lower self-esteem than me. (F)

2: Health history

All of the participants reported that, before their fibromyalgia diagnoses, they had had health issues, such as muscle tension, joint pain and stomach problems:

…I’ve had the FM diagnosis for about 10 years, but as is often the way with these things, obviously there’s a lifelong story leading up to that of other problems before I got that far. (F)

I’ve had unexplainable pain stuff since probably 2000. Stomach issues all my life. (B)

My fibromyalgia was diagnosed in my early 20’s after a childhood of general malaise, huge amounts of antibiotics due to kidney problems and then EBV/CFS at 19. (L)

…I’ve always had really bad muscle tension [unintelligible]… pain… I’ve got some lower back problems, but I was fairly healthy. I would get a stiff neck, kind of come and go… (T)

4: Role of trauma

Trauma is often cited as a trigger for fibromyalgia, and people with ADHD are reported as being more at risk of trauma. However, not all people with ADHD who experience trauma, will go on to develop fibromyalgia. Furthermore, people with ADHD who have not experienced trauma, can also develop fibromyalgia.

One focus group participant shared details of a particular traumatic incident which triggered her fibromyalgia. However, other participants discussed how they felt that undiagnosed ADHD and the struggle of coping with ‘everyday life as a neurodivergent in a neurotypical world’ (F), had triggered their fibromyalgia:

Through the slow process over the years of learning to speak up for myself and aiming to be a “more authentic” version of myself for the sake of my own self-respect and peace of mind, with […] and some friends, I have unmasked about the physical pain and fatigue of fibromyalgia… (F)

The journey my health has taken me on has made me begin to question if years of living with ADHD, when it wasn't a thing, so no support, has caused my other issues. The Dr who diagnosed me with dysautonomia seemed to think this was very likely. So, for me, masking the ADHD caused my other issues. (B)

Early stress in human development could alter stress mechanisms, leading to increased vulnerability to stress-related disorders. As such, lengthy trauma or life stress in childhood and adulthood seems to negatively affect brain modulatory systems, of both pain and emotions (Galvez-Sánchez et al., 2019):

Early life stressors or severe and prolonged stress effectively predicts the development of chronic and severe pain. Psychological distress has a strong aetiological influence on chronic widespread pain (Gupta et al., 2006).

3: Overlapping symptoms and health conditions

Alongside their fibromyalgia, all but one participant reported other diagnoses, which meant that it was not always clear which condition caused which symptom:

They say you get those kind of ‘muddly’ things… like I can’t quite say for sure anymore what’s fibromyalgia symptoms and what’s something else and… uh… fibromyalgia in itself is a very broad title that covers many things… (F)

Two participants had been diagnosed with hypothyroidism (underactive thyroid) and one also had a diagnosis of dysautonomia:

I have also been diagnosed with dysautonomia […]. Then on top I have underactive thyroid and menopausal. So I can’t explain the link between symptoms as I don’t know which of my disorders is causing what and when. It’s very confusing and frustrating. (B)

In addition, hormones impacted on participants’ fibromyalgia, as well as their ADHD:

…on my period today and it’s no matter what I do… no matter what strategies I put in place… the week leading up to my period or on my period my symptoms are so much worse… everything… it’s like yeah… pain, fatigue and my stomach is worse… (T)

I can’t focus and my ADHD gets worse as well like work… the week leading up to my period at work… I might as well not be there… I’m so unproductive… (T)

I’ve… definitely deteriorated… due to peri-menopause… um… noticeable deterioration in… or… increase in all symptoms… (F)

One participant also felt that there was overlap between her autism and fibromyalgia:

Some symptoms I vaguely thought were part of fibromyalgia, I now have different diagnoses for, for example sensory sensitivities. I put that down to fibromyalgia, but now I have a separate diagnosis of Sensory Integration Dysfunction as an off shoot of Autism. (F)

5: Impact of ADHD

The final theme that emerged from the discussions was how ADHD traits impacted on participants’ fibromyalgia:

When my brain is being under-stimulated, I think my fibro type symptoms kick in even more so. (L)

…we haven’t got the alarm in our own mind to say… ‘you’re going to pay for this tomorrow you need to just chill a bit’ until it’s too late, I think… I think that’s a real downside for us… (B)

In fact, an ‘overactive lifestyle’ and ‘high action proneness’ (which means ‘a cognitive and behavioural tendency towards direct action’), have been cited as common pre-morbidities in CFS and fibromyalgia patients (Van Houdenhove et al., 2001, 2006) and as ‘predisposing, initiating and maintaining factor of chronic pain’ in people with fibromyalgia (Baeza-Velasco et al., 2018, p.167). Participants’ descriptions reflect the difficult balance described by Radley (1994) of being perceived either as ‘too reckless’ if they try to press on as normal, or as malingerers if they take care of themselves (Varul, 2010):

It doesn’t matter how many times you tell me… I understand the theory, but I’m totally incapable of doing it, and of course if the person talking to you doesn’t know anything about ADHD, they just think you’re not trying hard enough… like… ‘you’ve been told what to do and you’re not doing it I can’t help you…’ (F)

…everything says the same thing about how you should manage this but… I can’t stick to a routine long enough… (T)

Participants felt that strategies, which were recommended for people with fibromyalgia, were impossible for participants to stick to, which led to feelings of frustration:

So yeah… um… the main… the main… um… strategy I was told for fibromyalgia is pacing yourself, which is just like an ADHD nightmare. It’s like completely incompatible… (F)

…all the mindful stuff… there’s so much mindful stuff… mindfulness stuff out there at the minute and… you know… I can’t do it! I just can’t…” (B)

References:

Baeza-Velasco, C., Sinibaldi, L. and Castori, M. (2018) ‘Attention-deficit/hyperactivity disorder, joint hypermobility-related disorders and pain: expanding body-mind connections to the developmental age’, ADHD Attention Deficit and Hyperactivity Disorders, vol. 10, no. 3, pp. 163–175 [Online]. DOI: 10.1007/s12402-018-0252-2. Available at: [PDF] Attention-deficit/hyperactivity disorder, joint hypermobility-related disorders and pain: expanding body-mind connections to the developmental age | Semantic Scholar

Galvez-Sánchez, C. M., Duschek, S. and Reyes del Paso, G. A. (2019) ‘Psychological impact of fibromyalgia: current perspectives’, Psychology Research and Behavior Management, vol. 12, pp. 117–127 [Online]. DOI: 10.2147/PRBM.S178240. Available at: [PDF] Psychological impact of fibromyalgia: current perspectives | Semantic Scholar

Gupta, A., Silman, A. J., Ray, D., Morriss, R., Dickens, C., MacFarlane, G. J., Chiu, Y. H., Nicholl, B. and McBeth, J. (2007) ‘The role of psychosocial factors in predicting the onset of chronic widespread pain: results from a prospective population-based study’, Rheumatology (Oxford, England), vol. 46, no. 4, pp. 666–671 [Online]. DOI: 10.1093/rheumatology/kel363. Available at: The role of psychosocial factors in predicting the onset of chronic widespread pain: Results from a prospective population-based study | Research Explorer | The University of Manchester

Van Houdenhove, B., Neerinckx, E., Onghena, P., Lysens, R. and Vertommen, H. (2001) ‘Premorbid “overactive” lifestyle in chronic fatigue syndrome and fibromyalgia: An etiological factor or proof of good citizenship?’, Journal of Psychosomatic Research, vol. 51, no. 4, pp. 571–576 [Online]. DOI: 10.1016/S0022-3999(01)00247-1. Available at: Premorbid "overactive" lifestyle in chronic fatigue syndrome and fibromyalgia. An etiological factor or proof of good citizenship? - PubMed (nih.gov)

Varul, M. (2010) ‘Talcott Parsons, the Sick Role and Chronic Illness’, Body & Society - BODY SOC, vol. 16, pp. 72–94 [Online]. DOI: 10.1177/1357034X10364766. Available at: Talcott Parsons, the Sick Role and Chronic Illness - Matthias Zick Varul, 2010 (sagepub.com)