This presentation was delivered as part of the ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Conference held on Saturday 12 May 2018 in Attard, Malta. The conference was opened by Her Excellency, President Marie Louise Coleiro Preca.

1. Stumbling through the
fog: A lived experience
of fibromyalgia
EUROPEAN NETWORK OF FIBROMYALGIA ASSOCIATIONS (ENFA) MEETING
SATURDAY 12 MAY 2018, ATTARD, MALTA
Simon R. Stones

2. I’m Simon Stones
Award-winning patient leader.
Patient and carer advocate.
Freelance consultant.
Charity representative.
Qualitative researcher.
You can find me at @SimonRStones

3. “It’s not always the
tears that measure
the pain. Sometimes,
it’s the smile we
fake”

4. You’re far too
young to
have
fibromyalgia!
Fighting the myth that fibromyalgia
does not discriminate by
demographics, including age or
gender
4

5. 1996
1999
20042006
2008
2012 2018
Diagnosed with juvenile
idiopathic arthritis (JIA)
Commenced treatment with
methotrexate
Commenced biological
therapy with etanercept
Onset of Crohn’s
disease
Diagnosed with
Crohn’s disease
Diagnosed with fibromyalgia Here I am…

7. There’s lots of confusion
about fibromyalgia
Fibro Fibrous tissues such as tendons/ligaments
My Muscles
Algia Pain
A fibromyalgia
diagnosis often feels
like the last resort
diagnosis… when
nobody seems to really
know what is wrong
PAIN
FATIGUE
FOG
Mild Severe
Tired Walking dead
A little slow Losing it

8. You wake up to the
unknown, every day
Varying pain (severity,
location, duration)
Swelling, stiffness and
difficult moving
Sensitivity to changes in
weather and to noise,
lights and other factors
Headaches, irritable
bowel syndrome and
other symptoms
Fatigue, ranging
from tiredness
to complete exhaustion
Cognitive disturbances, including a lack of
concentration, temporary memory
impairment and mixing up words

9. 9
Anxiety Guilt
Depression
Isolation
Worry
Obsessive
Judgement
I don’t want to lose my job
What will they think of me
I’m not lazy
Listen to me
Is it all in my head?

10. How is your arthritis?
How is your
fibromyalgia?
How is your Crohn’s?
Fantastic, your inflammatory markers are normal!
It’s probably flared up.
Exercise will help.
Let me know what the
Gastro doctor says.

11. Drug based
Trial and error
We only treat the symptoms, because we don’t
know enough about the underlying condition…
They can make things
worse
It ends up being your
decision
Non-drug based
Pain clinic
Exercise and physical
activity
Psychological support
Self-
management
Also known as…
See how you get
on, come back to
clinic in 9 months
The challenges of treatment

12. You need to pace
yourself. Don’t do
too much.

13. 1. Make time for yourself each day
2. Adjusting your sleep arrangements
3. Work smart, not hard
4. Use mind and body techniques to
help you to relax and stay active
5. Use heat – whether in the shower,
bath, or as heat packs
6. Record and reflect
My seven
strategies to
managing
fibromyalgia
7. Surround yourself with support

14. Make time
for yourself
each day
Doing something for you, and never feeling
guilty about doing so…

15. Adjusting
your sleep
arrangements
Finding what works for you… there’s no right
or wrong thing to do…

16. Work smart,
not hard
Find what works for you – there’s no point
fighting yourself. As long as you manage to
do what you need to do, does it matter when
you do it?
Mornings are a little
rubbish, especially
towards the end of a
busy working week
DAY 105:30 20:30
DAY 209:00 17:30
DAY 310:30 18:30

17. Use mind and body
techniques to help
you to relax and
stay active
You need to switch off from the busy world
around us. Keeping your mind and body
active is really important…

18. Use heat –
whether in the
shower, bath or
as heat packs
It’s often little ‘hacks’ which people with
fibromyalgia experiment with that turn out to
be useful…

19. Record and
reflect
It’s a great way to express your feelings, as
well as noticing any patterns in symptoms…
it’s also a good idea to record things so that
you can remember (thanks fibro fog!)

20. Using freely-
available
technology
Simple strategies to help you to keep track of
activities and things you have done (and need
to do).
Place your screenshot here

21. Surround
yourself with
support
The support of others, in the real and virtual
worlds, can be of enormous value… embraced
by people who ‘understand’

22. Support from those
with lived experience
× Medical information for healthcare professionals
× Patient information for patients, carers and teachers
× National helpline
× Benefits helpline
× Over 150 local support groups across the United Kingdom
× Online support forum, including HealthUnlocked
The national charity in the United Kingdom for people with
fibromyalgia and their families

23. Research empowered me
to take control
To learn about my conditions
To source evidence-based information
To develop skills and techniques
To find support from peers
To grow in confidence

24. “If the plan
does work,
change it – but
never change
the goal…”

25. Thanks!
Any questions?
You can find me at:
@SimonRStones
Simon.Stones@fmauk.org