Support for the FM Family

FIBROMYALGIA
MAGAZINE
UK Fibromyalgia Year 22 • Issue 8 • June 2022

How Chronic Pain

Impacts Your Social Life
Understanding Fatigue Triggers:
How to Extend Your Energy Battery By
Pacing Yourself by Activity Type
by Katarina Zulak

Recently, one of my oldest friends developed Long Covid, and is

trying to manage severe fatigue. It’s hard to hear about someone
going through the pain and confusion of illness onset. I’ve shared a
bit of what I have learned over the years about managing fatigue,
and Kayleigh
in those discussions,
Robertssome andinteresting
Christinequestions
Harris emerged.
What fatigues you? How do you pace yourself when there are
different types of fatigue triggers?

Learning Your Limits: Different Types of Fatigue Triggers

When I started to list all of the things I find particularly tiring, I quickly noticed they fit into organic categories.
My energy zappers, or fatigue triggers, fall into the following buckets, with the caveat that bad sleep, pain,
or stress makes everything more fatiguing:

• interpersonal activities (socializing/appointments/meetings): it takes energy to be ‘on’ around

other people, to actively listen, respond, and share. Limit: 30 min to 2 hours, depending on who I’m
with and where.

• concentrating: focusing my attention to write, categorize, edit, or plan takes up a lot of mental
resources. Limit: 1.5 hrs.

• sensory overload: Going to a place with a cacophony of people, sounds, sights, and smells,
is draining, especially with a task to do. For example, I find it very taxing to go to a grocery
store, walk down an aisle of cereal boxes, and find which one I want. I don’t know what you call
this challenge; it’s partly visual overload and partly difficulty sorting and identifying one thing
from many things. Limit: 15-30 minutes.

• physical overexertion: Usually my pain boundaries mean I don’t physically over-do it

badly enough to have a fatigue crash but it can happen, especially on very hot days, or
days where I am out of the house for more than a few hours.

Understanding that different activities will tire you for different reasons can improve efforts to pace
yourself. When I developed fibromyalgia, I thought ‘fatigue’ came only from physical exertion or social
plans. I didn’t factor sensory stimulation or concentration into my calculations on what would drain my
energy. This meant that I overdid certain types of activities and crashed more frequently. The best way
to identify your limits by types of fatigue triggers is to keep a log of all your activities, how long you did
them, and their effect on your fatigue. For example:

Time Activity & Fatigue Trigger Type Fatigue Level Notes

9:30-11:30 am Computer Work (Concentrating) Before: 2/5 Crashed in bed afterwards;
(2 hrs) After: 4/5 word recall worse

Fibromyalgia Magazine • June 2022 • pageone

Planning Around Fatigue Triggers: Sequencing and the Combined Multiplier Effect
In order to pace yourself, you need to be able to roughly predict how your planned activities will contribute
to your fatigue. It becomes clear quickly that scheduling a sequence of draining activities will make you
more exhausted than if you stick to a limit of only doing one or two activities per day/week.

My experience is that I drain my overall energy battery faster by overdoing one type of trigger in one
day. That’s why it is important to mix up different types of fatigue triggers in one day. For example, I know
that limiting my productive activities on a single day to 1 hour of writing (concentrating) and a 20 minute
walk (physical exertion) will protect my energy from crashing. But, if I schedule multiple tasks involving
the same type of fatigue trigger in one day, I will crash. So, if I do 2 concentrating activities (like computer
work and meal planning), or 2 physical activities (like a walk and housecleaning), then I will have no
energy left.
The ‘advanced’ fatigue trigger math comes when you need to calculate the combined multiplier effect of an
activity that includes two or more fatigue triggers (concentrating, physical exertion, sensory overload, and
interpersonal activities). If I go to a local farmer’s market, I will find it more exhausting than a neighbourhood
walk, even if I take the same number of steps (physical exertion x sensory overload). If I meet a group of
people in a crowded, noisy space (pre-covid), my battery will drain much faster than a quiet one-on-one
lunch (sensory overload x socializing). If I meet up with a friend while shopping, I will become more tired than
if I’m sitting for the visit (physical exertion x socializing). If I try to concentrate anywhere noisy (cognitive
x sensory) or social (cognitive x socializing), my brain will short circuit more quickly than if I’m at home.

The key to this strategy is to be able to analyze your anticipated plan ahead of time to simplify them and
minimize fatigue triggers down to 1 type per activity to save yourself from the combined effect of multiple
fatigue triggers. Next time you meet a friend, do it somewhere quiet, seated, and one-on-one.

Putting it all Together:

How do you pace yourself when there are different types of fatigue triggers?

1. Identify the daily activity time limits by type of fatigue trigger, on an otherwise
normal day, by keeping a log.

2. Note the effects of any extra pain, stress, or insomnia that might contribute to
how draining an activity is.

3. Sequence your activities carefully, requiring only 1 or 2 energy demanding

activities per day, depending on your day limits. Mix up your activities each day
by type of fatigue trigger.

4. Try to limit the combined multiplier effects of any one activity.

For each plan, ask:
What will the sensory environment be?
Will it involve physical exertion?
Will it require me to concentrate or pay attention?
How much socializing will be required?

5. Consider your week activity limits by type of fatigue trigger.

How does what you did yesterday impact you today?
Does one block of concentrating work yesterday mean you are brain fogged today?
Set your limits based on how many days of recovery you need following a type of
activity so you do not crash. For example, I can only handle 1-2 social interactions
per week. If I have 2 appointments this week, then I cannot meet a friend or have
a phone-call with my brother until next week.

Fibromyalgia Magazine • June 2022 • pagetwo

 JacquiMayes
nutritional therapy
[email protected]
www.jacquimayes.co.uk

Watermelon, Radish & Feta Salad

This is one of my favourite summer salads with down into amino acids and the body uses them
Watermelon, Radishes and Mint all being in season as the building blocks for literally every function
and at their best in June. Its super easy to make, including; growth and repair, neurotransmitter
has only a few ingredients and goes really well production, immunity, digestion, hormone
with grilled meat or fish or just to have on its own. production, energy etc. etc. etc.
Watermelon is about 92% water and contributes to But above all, the salad is just delicious and definitely
your daily fluid intake. This is particularly important worth a try on a sunny June day.
as dehydration can be a trigger for fatigue, brain
fog and painful joints. The current recommended
daily guidelines for fluid consumption is 1.5ltrs for
women and 2ltrs for men and lots of people find
that difficult to meet, so eating fruit and vegetables
which contain a lot of water help you to reach that
target. Watermelon is also full of Vitamins C, B1,
B5 and B6 as well as the minerals Magnesium and
Potassium. It also contains some great anti-oxidants
which protect our cells, in the form of beta-carotene
and lycopene.
Radishes are rich in fibre and because of their
slight bitter taste, they stimulate bile production,
so they are great for your digestion. They are low in
calories and they also have good levels of Vitamin
C, the B vitamins and most minerals. B vitamins and
Magnesium are both needed for energy production Ingredients
and cognitive function, so this is a good salad to 4tbs pine nuts
have if you are not feeling particularly switched on.
800g Watermelon
Mint has one of the highest anti-oxidant capacities 400g Radishes
of any food and is thought to be great for your Mint sprigs to taste
digestion. Its also a good source of Vitamin A which is 100g feta cheese
essential for many processes in your body, including
2tbsp rapeseed oil
maintaining healthy vision and ensuring the normal
4tbsp red wine vinegar
function of your immune system. The vitamin is
needed to convert light that hits your eye into an Toast the pine nuts in a dry frying pan for a few
electrical signal that can be sent to your brain and minutes until they are lightly golden. Allow to cool.
one of the first symptoms of vitamin A deficiency Cut the radishes and watermelon into thin slices
can be night blindness, which is something that (removing the rind and any seeds). Arrange on a
many people with Fibromyalgia find challenging. serving plate and dress with the ooil and vinegar.
Season with a little sea salt and black pepper.
The salad contains a good amount of protein in the
form of Feta and Pine nuts. Protein foods are broken Enjoy!

Fibromyalgia Magazine • May

June2022
2022 • pagethree
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FibroMYalgia
FIBROMYALGIA - what is it? Well, it’s the new way - but once I get the chance to actually explain
fascinating, mysterious, regularly ignored and and how fibro affects me, people around often stop
misdiagnosed disability (and it’s only recently been noticing the little quirks. As weird as it may sound,
accepted as an actual disability) of the 21st century, that makes me feel more comfortable, in a way. I
even Lady Gaga has it if you didn’t know! What it am getting a lot more confident now though and
actually is however, is a massive pain up the backside the way I see it is if people still wish to label me, then
and if it was a person I would actually kick the living it’s purely down to their own ignorance.
crap out of it (as long it was on a good day and I
For a long time I lived just going through the motions
was able to walk and focus properly of course) for
of the normal day to day, it controlled my thoughts
making me feel like I do. I have been through all the
and emotions, took my memories away from me
emotions with this condition in the beginning, I utterly
with the relentless fibro fog and has made me the
despised it and hated it relentlessly for slowing me
largest I have ever been. It honestly stripped my
down, I felt like it totally stopped my life. It ground
confidence away from me layer by layer, made
me so far down for a long time I didn’t know who I
me weak and made me doubt my own physicality
actually was a person anymore.
and mostly made me scared for my future. In my
head it was telling me I couldn’t walk my dogs and
even stopped me from enjoying time with my kids
because I felt I couldn’t run after them in case I fell.
How is that any way to live?
When I was first diagnosed I didn’t have a clue
what it was, my first response was to Google it and
I know everyone says ‘don’t do that you’ll only hear
horror stories’ but with fibro I couldn’t because of
how little information there was! Well there wasn’t
back 11 years ago, the only information I found was
medical descriptions detailing the touch points of
pain and professionals who had the opinion that the
condition is all in the brain and how we as individuals
I should really introduce myself. Hello, my name is
exaggerate or make up symptoms! That’s where
Lyndsey and I have Fibromyalgia, this is what I say to
they’re wrong, it’s an invisible condition and unless
nearly everyone I meet (and yes, it is irritating). Why
you suffer like myself it’s hard to understand, but we
do I do it? I mean, I don’t with every single person
are all different, we all feel the condition differently.
because then people would think I’m just plain weird.
Some suffer from fibro fog, intense body pain, the
A new work colleague or people I’m going to spend
list is endless.
a lot of time with - I do it then because we as a
society tend to judge, don’t we? Please don’t say But honestly, there simply is not enough information
‘well I don’t!’ because we do. I know I’ve judged and or guidance out there on this condition and this is
been judged, more often than not. the main reason I want to put my experience out
there of how I did and didn’t deal with it because
With this condition I have good and bad days, on
I really think it will help show others how it feels. I
the good days, I can look totally normal but on my
want people to know that yes, random pains are
bad days, I may walk, talk or even act almost like
part of it, feeling spaced out or utterly exhausted
I’m drunk or on drugs and this is solely due to the
to point that you could fall asleep standing up or
fibro. I have been deemed as ‘thick’ before (dumb if
sitting on the toilet is perfectly normal I want people
you’re not from the north) because I can’t even string
to understand you are normal feeling this way and
a sentence together. I’ve been laughed at because
it’s all part of living every day with Fibro, because
I couldn’t walk straight and I have been accused
for me in the beginning I really struggled, I still do
of being drunk on numerous occasions and even
occasionally but every day’s a school day and even
though it’s said in jest, it still makes me worried that
now I still feel like a student.
people who don’t know me may always think that
Fibromyalgia Magazine • June 2022 • pagefive
For me when I look back, what I should have done is mental notes to remember and then getting mad at
accommodate the condition straight away. I should myself because the following day I’d totally forget
have made all the necessary life changes required them, never ending lists with absolutely no time
to live with it but I didn’t, I fought it daily which made to complete them, the condition was totally out of
the condition spiral out of control and made my life my control and I now found myself addicted to the
utter hell. It made me tense, anxious but even more medication I had been given. I was in denial. I thought
determined that I wasn’t going to slow down, I was I was winning but the fact of the matter was, I was
NOT going to be disabled, I marched on paying no losing. I was slowly killing myself and I needed to
attention to the condition even when my body was get a grip, slow down, listen to my body and take
screaming at me. I burned out constantly, every proper control.
inch of me was in agony, I couldn’t concentrate,
I went on though, totally ignoring everything,
couldn’t sleep, barely functioned, relied more and
constantly fighting it and ignoring all the warning
more on medication to help with the pain. I got to
signs. The pivotal moment though, a trip to London
the point that I took whatever the doctor prescribed
and a photo, yes a photo that was taken of me
with no thought about the side effects and allowed
sitting on the edge of the bed in a pair of linen
the condition to take over my life. I got to the point
trousers (extra stretch size 22) and a bra doing
where I’d get out of bed, put my fake face on and
my hair. I choose to never look at myself in a full
battle against what was slowly killing me. My head
length mirror but when I looked at myself in that
ached, my memory lacked, even my eyesight was
photo I was mortified, utterly devastated, the best
an issue, IBS raged on and I was ultimately on a
way I can describe it is I looked like Jabba the Hutt
path of self destruction.
from Star Wars (no joke I really did) and that was
I ate everything that was wrong for me, a regular it. I went into the bathroom, cried, washed my face,
lunch was crisp sandwiches (what I would see as put that fake happiness back on and went back out
lazy food) - thick white sliced bread with lashings of as though everything was ok. Inside though I was
lurpak butter, Walkers crisps and I wasn’t picky with dying, I hated myself even more than ever and even
the flavour, I drank fizzy pop, lucozade, gallons of though I never had huge confidence in how I look I
tea, lattes and NO WATER EVER. My weight gain was couldn’t understand how could I let myself get like
a massive result of all of this, the bigger I became the this. I knew that no one forced me or helped me
more pressure it put on my body, my joints ached get to this point, it was all self inflicted but seeing
constantly, the more rubbish I put into my system how I now looked disgusted me, but this is where I
the more my IBS raged, I ate everything I loved to realised, something needs to change.
make me feel better and nothing was in moderation
- cakes, pastries, ice cream and fried food literally
everything that was bad for me and made me feel
ill, I was so bloated I looked pregnant. All of this
started putting pressure on every organ inside me,
on my spine (and having scoliosis didn’t help) my
hips, my pelvis - I was a total mess - but I was doing
it all to myself.
Work was another thing, I rarely stopped working
even. I did any extra hours I was asked to do (as
long as I could still manage the school run), I was
manic about my house it had to be clean top to
bottom, all the housework had to be done (even
though to me it never looked clean), meals had to
be planned in advance. I put so much ridiculous
pressure on myself. I had constant heartburn and
reflux caused by my unsuitable diet and lifestyle, my
anxiety levels were through the roof and my energy
was totally depleted due to my sleeping pattern
(or lack thereof). I couldn’t switch off, my mind was
constantly ticking over. Constantly planning, making

Fibromyalgia
Fibromyalgia Magazine
Magazine • June 2022
• February 2022 • •pagesix
pagesix
 Disdain

Don’t look at me with disdain

Because you can’t see my pain
How do you know how I live?
What do I have to give?
I’m tired of being me
When others cannot see
When I try to explain
So, don’t look at me with disdain.

Don’t roll your eyes again

When I am clearly in pain
With my arms, with my legs
No it’s not all in my head.

My nervous system lets me down

My pain makes me cry, makes me frown
So keep your thoughts to yourself
Leave me on the shelf

Better to be alone
Heart heavy, like a stone
Than having you judge me
Having you begrudge me
My time I need to regroup
How low can you stoop?

But don’t you feel too bad

Plenty of help I’ve had
It’s not my fault it was in vain
And still exhaustion and pain
But I am stronger than I look
When my confidence is shook
Still, I fight on and on
Because my pain will never be gone!

By Karen Crosby

Fibromyalgia Magazine • June 2022 • pageseven

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Fibromyalgia Magazine • June 2022 • pageeight

Fibromyalgia which is also known as fibromyalgia syndrome (FMS), is a long-term illness that
causes the sufferer pain throughout their entire body. The symptoms of fibromyalgia are wide
ranging, and this can mean it is extremely difficult to diagnose. The difficulty in concluding on
a definitive diagnosis can mean that the fibromyalgia sufferer has to undergo numerous tests
and can even have to see several doctors before the issues can be pinpointed.

What are the Symptoms of Fibromyalgia? It really depends on what symptoms the patient has.
The symptoms that the patient is suffering will dictate
The primary symptom of fibromyalgia is widespread
what treatment a doctor elects to pursue.
pain throughout the entire body, this can be debilitating
and extremely difficult to live with. Other symptoms Treatments include medication such as painkillers and
of fibromyalgia include: antidepressants. However, these medications can have
undesirable side effects and may not be advisable in
- Muscle stiffness
the long-run. In August 2020, The National Institute
- Sleep issues
for Health and Care Excellence (NICE) published a
- Extreme fatigue
statement disclosing that commonly used treatments
- Fibro
for chronic pain can do more harm than good. This
- Migraines and headaches
is a serious matter to consider when a patient will
- Irritable bowel syndrome
likely have to deal with chronic pain for the rest of
- Increased sensitivity to pain
their life, using medication that can have long-term
If the symptoms sound familiar it is always best to ramifications may not be the best course of action.
consult your GP. However, many people encounter Opiates especially can have a devastating effect
difficulties with their GP when been assessed for on the user, leading to possible addiction and the
fibromyalgia and it can even take years before a destruction of personal relationships.
definitive diagnosis is made.
Another treatment option is talking therapies like
How to treat Fibromyalgia? counselling or psychiatric sessions. Cognitive
There is currently no cure for fibromyalgia but there behavioural therapy (CBT) could also be an option
are treatments that help to relieve symptoms of the for those dealing with the excruciating side effects
condition and make it easier to live with fibromyalgia. of fibromyalgia.

Fibromyalgia Magazine • June 2022 • pagenine

Lifestyle changes such as diet and exercise regimes too long and there is a distinct lack of understanding
can also be prescribed. However, this can often about the condition within the medical community
seem patronising at the time of diagnosis. Vague with many GPs not appreciating the severity of the
statements about improving the diet that is consumed condition.
can often cause more confusion. While diet is crucial
to being healthy, even in totally healthy people. It
Who is Affected by Fibromyalgia?
is particularly pertinent for those who suffer from Nobody is immune from developing fibromyalgia and
fibromyalgia. Exercise has been found to have some it can be developed in adolescence or much later in
really positive effects for people with fibromyalgia, life, it is dependent on the individual. Fibromyalgia
including a reduction in pain. does however affect 7 times more women than it
does men. Fibromyalgia typically develops between
What is the cause of Fibromyalgia? the ages of 30 and 50.
The true cause of fibromyalgia remains unknown and There is no definitive data on how many people in
has yet to be defined. Fibromyalgia is thought to be the UK suffer with fibromyalgia but it is considered to
related to abnormal levels of certain chemicals in the be a common condition. It is estimated that between
brain which in turn alters the way in which the central 1.5 million and 2 million people have fibromyalgia in
nervous system processes pain signals and how these the UK. While there are some estimations that the
pain signals are sent around the body. The central condition is prevalent in 1 in 20 people in the UK. The
nervous system is made up of the brain, spinal cord primary reason why there is no definitive data about
and nerves, the central nervous system is integral in how many people are affected by fibromyalgia is
almost all bodily functions. because it is such a difficult condition to diagnose.
Genetics are also believed to be a factor in those who There is no specific diagnosis for the condition and
develop fibromyalgia. Genes that are inherited from the symptoms of fibromyalgia can be similar to many
parents seem to be a factor in those who unfortunately other diseases and conditions.
develop fibromyalgia. No fibro is the same. This means that it is absolutely
Fibromyalgia in many instances, can be triggered imperative that physicians treat every patient to suit
by an emotionally or physically stressful event like: their own needs and listen to how the patient is truly
feeling to decipher what the best course of action is.
- Pregnancy and giving birth
Fibromyalgia is not a condition that can be prescribed
- The death of a partner, family member for from a textbook.
or close friend
- Major surgery Diagnosing Fibromyalgia
- Injury Many people discover that when fibromyalgia
symptoms materialise and are presented to a GP, it
- A severe infection
takes a significant period of time before a diagnosis.
- Breakdown in a romantic relationship
There are many people who are misdiagnosed
The brutal thing about fibromyalgia is that it is not because fibromyalgia is not well understood by
just the physical pain that sufferers have to endure. doctors compared to other conditions. Fibromyalgia
The toll fibromyalgia has on sufferers’ mental health was only identified, defined and labelled in the 1990s.
can be equally debilitating. Depression and anxiety The problem is that if a GP suspects that the cause
can grow to become a crippling illness in their own of the symptoms is fibromyalgia, there is no test that
right, the antidepressants that are often prescribed can be carried out to definitively confirm whether a
to deal with the emotional fallout of a fibromyalgia patient has fibromyalgia. Scans, blood tests and other
diagnosis can be detrimental to the user’s long-term investigative tests cannot definitively prove whether
mental and physical health. someone has fibromyalgia or not. This can mean
Those who have fibromyalgia can find it hard to accept that a GP can carry out a painful number of tests
that the true cause of fibromyalgia remains unknown. and it can lead to someone being referred to various
It is much easier to deal with a condition you are different GPs and even specialists. GPs often want
diagnosed with once you are aware of the cause of the to rule out the symptoms being caused by arthritis,
problem. Many people who have fibromyalgia have multiple sclerosis or chronic fatigue syndrome (CFS/
said that the fibromyalgia diagnosis process takes far ME).

Fibromyalgia Magazine • June 2022 • pageten

If a GP is unable to come to a formal conclusion, they Researchers remain unsure about how much fibro
may resort to diagnosing fibromyalgia as the cause fog is caused by the distraction of pain and sleep
of the symptoms. deprivation. There have been studies into the attention
Being diagnosed with fibromyalgia can be extremely span, memory and thinking problems in people with
difficult to take and there are so many questions that fibromyalgia, but the results have been mixed and
run through your mind. It can really help to talk to by no means definitive.
people in a similar position through support groups, A controlled trial that took place in 2018 compared
online chatrooms or the Fibromyalgia Facebook the working memory in people who had been
Group. diagnosed with fibromyalgia and with those of healthy
participants. No major difference was found. Those
What is Fibro Fog? with fibromyalgia felt strongly that they had significant
problems with memory and thinking in their day to
day life. The researchers thought that one reason
for the disconnect is that thinking and memory tests
under controlled conditions without the distraction
of daily life, means that the real-world function is not
truly reflected.
The true cause of fibro fog remains up for debate.
Many scientists and doctors believe that fibro
fog could be related to poor sleep. A 2018 study
compared people with fibromyalgia, depressed people
and healthy individuals found that most cognitive
problems reported by those with fibromyalgia were
related to poor sleep which was reported by 99% of
the fibromyalgia sufferers who participated.

How does Sleep effect those with

Fibromyalgia?
Fibromyalgia is a chronic pain condition that can
A lack of sleep can cause health problems in the
cause pain throughout the body and symptoms such
healthiest of individuals. So, for those who live with
as memory loss. This problem is commonly referred
fibromyalgia the lack of a good night’s sleep can
to as fibro fog, within the fibromyalgia community.
have a detrimental effect on their health and mental
Fibro fog which is also known as fibromyalgia fog or state. Waking up constantly throughout the night or
brain fog, is a common way of referring to the brain lying awake for hours are not uncommon effects of
related problems that occur when fibromyalgia sets fibromyalgia. A good sleep can prepare sufferers to
in. Doctors have yet to decipher the cause of fibro wake up well prepared mentally and physically to
fog, but the resulting effects include sleeping issues, deal with the daily battle against fibro.
depression and fatigue.
Exercise can induce sleep and make it easier to fall
The loss of mental clarity is a key aspect of fibro asleep as your body is more tired. More alternative
fog. Over 50% of fibromyalgia sufferers report solutions such as meditation and yoga could also be
issues concerning mental clarity and it is twice as tried to see if it enables a good night’s sleep.
prevalent in fibromyalgia than most other rheumatoid
conditions according to the report by the Clinical and Exercise for Fibromyalgia
Experimental Rheumatology published in 2016. A study that was undertaken in 2018 discovered that
The most common fibro fog complaints are: people with fibromyalgia who did resistance exercise
twice a week for 4 months were able to process data
- Difficulty conversing and the ability to and information quicker than before they started
process information efficiently exercising. Exercise was also found to improve sleep in
- Reduced thinking ability, slowed thought people with fibromyalgia. It is a common theme
throughout studies that have taken place, that sleep
- Forgetfulness
disturbances during the night decrease after 8 weeks
- Low levels of concentration of a consistent exercise regime.
Fibromyalgia Magazine • June 2022 • pageeleven
UK Fibromyalgia have published an Exercise Guide for Fibromyalgia Support Groups
Fibromyalgia. This exercise guide is a brilliant tool for
anyone with fibromyalgia. It has an array of exercises
that can help build strength and flexibility. The exercise
guide also has guidance about warm downs and post
workout massages.
Exercise is a pivotal part of everybody’s life, being
diagnosed with fibromyalgia should not discourage
regular exercise. While it can be painful to begin with,
overtime strength will build, and the exercise routine
will become less taxing. Within the fibromyalgia community there is a vast
network of support groups throughout the UK.
Fibromyalgia Diet Tips Fibromyalgia is an extremely common condition
Eating a balanced diet is probably a good idea for but there are many people who do not know what
everyone, regardless of fibromyalgia. A healthy diet the condition is and how it affects people who have
should include fresh fruits, vegetables, whole grains, fibromyalgia. This is why the support group network
lean protein and healthy fats. It is best to avoid is such a great thing for people, especially those
unhealthy foods such as processed or fried food, who have been recently diagnosed. A diagnosis of
excessive amounts of saturated fats can also cause an illness that has no cure and will plague you for the
harm in the long-term. Salt and sugar should both be rest of your life can be extremely scary and lonely.
limited within your diet. Having a community who you can turn to for advice
Fibromyalgia can cause severe tiredness and it and education on the condition can be a lifesaver and
can really tire those with the condition out. Eating it can make the condition less intimidating.
specific foods can help to provide extra energy. It is UK Fibromyalgia lists all of the active support
important to avoid sweets and chocolate as a quick groups from around the UK on its website. (www.
sugar rush is not a good solution to tiredness and only ukfibromyalgia.com). Using this website, recently
lasts for a brief period of time. Consuming foods that diagnosed or long-term fibro warriors can find out
provide enough energy to get you through the day where the nearest support group to them is and can
is important. The combination of fats and proteins get in contact to find out about meeting and arrange
with carbohydrates to slow down the absorption of calls with fellow members to discuss their condition
the food. Fresh, whole foods that are high in fibre and to share secrets about how they deal with the illness.
low in sugars are ideal. Good examples are:
- Beans Conclusion
- Broccoli While there is currently no cure for fibromyalgia, and
- Oats it remains uncertain what actually causes the disease
- Avocado there are things people with fibromyalgia can do to
- Tofu make living with the condition easier. Diet and regular
- Dark leafy green vegetables like exercise can have a profound impact, leading to life
spinach and kale being more pleasant and an improvement in both
mental and physical health.
There is no single fibromyalgia diet but there is
evidence that suggests that particular foods can be Fibromyalgia is difficult to diagnose, and patients
problematic to those with fibromyalgia. These foods can become very frustrated with the medical system
include: when awaiting a diagnosis. Awareness of fibromyalgia
is growing but it is still a condition that not many
- Gluten containing foods
people are aware of, making it difficult for people with
- Food additives or chemicals fibromyalgia to explain to their family and co-workers.
- Excitotoxins like MSG The most important thing is to stay positive, never
- FODMAPs – This stands for give in and control the things within your power to
Fermentable oligosaccharide, disaccharide, ensure that healthy choices are made and a solid
monosaccharide and polyols are certain daily routine is implemented.
carbohydrates that are fermented by gut
bacteria when being digested.

Fibromyalgia Magazine • June 2022 • pagetwelve

 How Chronic Pain Impacts
Your Social Life
Chronic pain can be invisible which can ultimately make it
extremely difficult to communicate how you are feeling to
other people. When someone is in an accident or is injured
which results in acute pain, it often evokes sympathy and
they receive compassion from those around them. However,
with chronic pain you are unlikely to receive gifts, have meals
cooked for you or even offers of to help with some daily tasks.

What can seem like a minor inconvenience from the As you miss more events the initiations soon begin
outside can actually be debilitating and excruciating. to dry up and you can be left with no options left to
Many people soldier through their chronic pain socialise. Others begin to make assumptions about
without too much complaint, this can lead to their your mobility and capability meaning that you are
loved ones and friends being unaware about the no longer even invited to events that you would love
true battle they are facing. to attend.
It is important to stay positive and that when you do
It is commonly believed that social activities are
go out to socialise, you do so with a positive attitude
equally important factors in staying mentally and
and always do your best to enjoy yourself to have
physically healthy for people suffering from chronic
a great time.
pain as the physical and psychological consequence
of suffering with a chronic condition. Impaired Interpersonal Skills
Having a chronic pain condition such as fibromyalgia,
Living with chronic pain can induce self-focused
arthritis, rheumatoid arthritis or sever back pain can
attention on the issue that is causing the pain and in
mean that the person who has the condition’s social
some conditions like fibromyalgia, the pain can be
relationships are tested and they can become very
widespread throughout the body. An example of this
difficult to maintain.
would be a persistent knee pain that distracts your
A Decrease in Social Participation attention away from the people who are in your
presence. When you are distracted by pain, it can
A chronic pain issue can mean it is physically too
impair your ability to show empathy or interest in
difficult to maintain a relationship with friendship
what the other person or people or saying. This can
groups. Flare ups of the chronic condition can
make you seem disinterested or even disrespectful.
lead to a terrible amount of pain which is a huge
The decline in attentiveness in what other people
disincentive to follow through with plans to meet
are saying can be noticeable and can mean that
friends and family. Being in constant pain can also
people do not enjoy your company as much as they
reduce the ability to participate in certain leisure
once did. It is important to regulate your emotions
activities too. The fear of being judged can also
and ensure you provide an explanation as to why
lead to someone withdrawing from their usual
you are distracted.
social activities.
Fibromyalgia Magazine • June 2022 • pagethirteen
Being open and honest with your friends can make The Effect of The Coronavirus Pandemic
it easier to participate at social events, it can also Many people who have chronic pain conditions
allow you to laugh at the situation you are now in are often categorised as having an auto immune
which can be very difficult at times. condition too. This means that COVID 19 is
Pain and Bad Moods particularly dangerous to them. From what the NHS
and government advise, the need to isolate and
Having to live in constant pain can understandably
be considerate of where is safe to go is enhanced
make it very tough to see the bright side of life
as the risk is greater. This results in many chronic
sometimes. Being in foul humour when in terrible
pain sufferers having to decline invitations to go
pain is not the fault of the sufferer but it is important
anywhere and socialise for almost 6 months. This
to articulate what the issue is. If you just snap at
can be very difficult as in their mind it is simply not
people without explanation, over a long enough time
safe to risk going to any sort of gathering or event.
period they will begin to retract the usual invitations
and not want to spend time with someone who is
Support Groups
always in a bad mood. Being in a bad mood is a
Support groups can be a great resource for those
perfectly natural reaction to chronic pain, many
suffering with a chronic pain condition. Support
chronic pain sufferers try to mask their mood and
groups enable you to speak to people who are
how much pain they’re in to allow others to feel
in a similar predicament as you and it can allow
more comfortable.
chronic pain sufferers to develop a more intricate
Negative vibes are contagious and can ruin the
understanding of their condition.
mood of an entire event. One person being in a bad
UK Fibromyalgia is an example of an organisation
mood can influence the mood of the people around
that helps people to find people in their area with
them. Having a negative attitude can lead to other
fibromyalgia to connect and discuss their respective
passing judgement and wondering about what
situations.
the cause of the poor form is, rather than simply
attributing to chronic pain. UK Fibromyalgia has listed the active support
groups across the UK on its website. You can also
Some painkillers, particularly opiates can lead to
get in touch with them with any questions you have
mood swings or withdrawal symptoms which can
about fibromyalgia or another chronic condition,
manifest themselves in bad tempers. One option
just email [email protected].
to consider if you are struggling with bad mood
swings is CBD. CBD is known to help you deal with The National Rheumatoid Arthritis Society, is also
both stress and pain. Using CBD to relax and feel a very helpful organisation that can help to put
more comfortable in social situations could be a people suffering from rheumatoid arthritis in touch
great option. CBD patches are a very convenient with support groups or even specialist doctors.
way to consume CBD and are a discrete manner of
Conclusion
taking it. You also don’t have to deal with the bad
taste of CBD and only use them once a day so you It is always best to let those close to you know
do not have to worry about taking it a few times how you are feeling and try to calmly express the
through the day. issues you are having to live with. This will help to
maintain healthy and happy relationships and
Loss of Connection
allow those who care about you to garnish a better
Suffering from a chronic pain condition can lead understanding of your condition. In turn, they should
to see the negative of side of people rather than be more understanding and may even actively seek
seeing what you share in common. Jealously can to help you in your daily tribulations.
also creep in and this can come to the surface in
the form of petty comments or tantrums. This
combined with cancelling events or not turning up
to birthdays or parties can lead to the assumption
that a chronic pain sufferer is not reliable or has lost
interest in a friendship. The judgement can then be
felt every time you meet making it quite awkward
at times. Awkward situations with people you used
to feel so close to can make you withdraw and feel
lonelier.
Fibromyalgia Magazine • June 2022 • pagefourteen
 Fibro Active April Diaries
by Julie Barker: Chairperson Fibro Active
A big thank you to Jane Gordon who wrote last months article while I compiled
our 6th Anniversary Review and submitted it as evidence for the Royal Society
of Public Health, Health and Wellbeing Awards. We will find out in July if we have
been shortlisted.

We finished March with the launch of the Walking to Inspiritive arts were on the group programme and
Awareness Campaign. This was a bit of a washout Marie got creative with folded cards.
due to the weather. The other committee members
Wed 13th - was Erewash Walking Week and Fibro
were due to be on a walking leaders’ course in Active were on the list of walks. Sadly, again, the
preparation for Erewash Walking Week later that weather was against us and it was pouring with
day and couldn’t do both events. So, Jane and I rain right up to the start of the walk, where we had
popped down to see if anyone would turn up and an improvement to drizzle! Just as we got to the
as no one would come out in the rain we hurried end, the heavens opened and we dashed into the
back to Jane’s and completed the last proof read park’s shelter. Poor Denise was walking home and
of the March article and submitted the awards entry got drenched to the skin. We were joined by Kev and
before attending the walking course Dan from Active Erewash and they informed us that
low attendance at groups and classes was common
April Week 1 at the moment all over the country. Learning this
Sun 3rd - The first Sunday of the month is Dr Lam’s allowed me to worry less about the current situation.
Instructor Forum and the subject was visualisation.
After the walk Jane and I went dress shopping for the
Visualisation is used by athletes and public speakers
Queen’s Garden Party. Jane tried on a few dresses
to improve performance. We use visualisation to
and chose a very on trend blue and orange dress.
learn the moves and to aid students who have
I just tried on one dress as I didn’t like the colours
restricted ability to improve their mobility. Jane wrote
this season, but I compromised with navy and pink.
a short paper on what we had learned and we used
it to theme our classes this week. The second of the walking to awareness step count
was a big improvement. We collectively walked
Mon 4th- Yang and BHQA classes. Class numbers 468.44 miles. The total so far is 719.59 miles. However,
were low due to covid. It’s hit attendance hard over our Just Giving page is still a bit slow to get going.
the past few weeks.
Thu 14th - We just offered one class of Tai Chi
Tue 5th- The Tai Chi for Arthritis class was also for Arthritis due to the Small Steps to Health class
struggling with Covid absenteeism. At group, we members all being away.
ran a qigong session and for Symptom of the Month
I found my original power point presentation on Fri 15th Good Friday and I went to support Jo Brigg’s
different types of pain; I had forgotten that, at the at her Walking Week walk around Trent Meadows,
beginning of lock down I had recorded my notes onto which is where I used to regularly walk my dogs. I
it. So, I set up the projector, sat back and relaxed! took Sam, my mum’s dog with me and his pet pram;
Sam is recovering from paralysis and still needs to
Wed 6th - We were in our park for our weekly walk
build up his strength. It was a lovely warm spring day
and it was the first step count of the campaign. The
and I really enjoyed getting out in the countryside
first week always takes time to get going and we
where I belong. Jo and I were able to catch up about
only counted around 275 miles, this put pressure on
the classes, Jo is the coordinator of the Strictly no
us to reach the following 5-week targets in order to
Falling programme of which we are partners. Jo also
stay on course.
told me that out of all of Derbyshire, there were only
Week 2 2 classes that are well attended at the moment; this
Tues 12th - The Tai Chi for Arthritis students at was also a relief to hear. .
Petersham Hall demonstrated the form, proving to us
that they knew it, so we presented them with t-shirts.

Fibromyalgia Magazine • June 2022 • pagefifteen

Week 3 afternoon classes. This put me over my limitations
and I ended up with a bad headache for the rest
Mon 18th In the morning I scheduled the Facebook
of the day.
posts. There are no classes due to it being Easter
Monday, a day off – allegedly! Tue 26th We had three new starters for our early Tai
Tue 19th was day one of the Mental Health First Aid Chi class. However, there was very low attendance
course for Peter, Margaret and Opkar via Zoom. at group this week. We had a new starter, Sam who
However, there were technical issues and Opkar had previous tai chi experience. Jane and I, worked
missed half the course and Margaret had to pull hard to bring the members up to speed with the
out because the course was only designed for one qigong, followed by a game of Fibro Bingo where
person on one device. No group today after the if your number is called, you get the chance to talk
Easter weekend. around the subject assignedt to the number. It’s a
great way to cover a variety of subjects relevant to
Wed 20th I sent updates and apologies to the FM/CFS in a focused environment, it can be quite
Small Groups Network meeting as none of us were serious and informative, but we usually have a good
available to attend. Jane looked after the walk while laugh. Attendance was low again as Peter and Opkar
I took my mum’s dog to the vets for his booster. The were on part 3 of the Mental Health First Aid Course,
Walking to Awareness steps count totalled 558.72 others had health appointments or were still on
miles for week 3 with a total so far of 1278.31 miles. holiday!
Thur 21st There was only the Tai Chi for Arthritis class
Wed 27th At the moment, due to FM/CFS and
again today. Our Thursday students demonstrated
Covid, there are just too few members to help out,
that they knew the form and were presented with
so for two Wednesdays we have had to split the
t-shirts. Opkar repeated day one of the Mental
committee to different events, Peter and Margaret
Health course after her technical difficulties.
led the weekly walk, sadly only my mum turned up!
Fri 22nd Ben, Jane and I met at Jane’s house for Jane and I were selling raffle tickets at Sandiacre
sword practice, my back has been on fire ever since CO-OP and Opkar and Lisa took over from us at
so I think I did a bit too much. Peter and Opkar lunchtime, while Jane and I went off to a meeting
completed day 2 of the Mental Health First Aid with Kay. I was able to pick up two vouchers from
course and in the evening one of our Facebook two coffee shops for raffle prizes on the way back.
members collected a t-shirt and stayed for a cuppa
In the evening I counted the weekly steps for the
and chat. Jane pinged to say her invitation had
Walking to Awareness Campaign. This week we
arrived for the garden party at Buckingham Palace.
have walked 521.15 miles which brought the total
Sat 23rd I attended a memorial for two of the up to 1799.46 miles. We are on schedule to reach
Scouters I knew when I was in uniform at the Scout the target of 2361.73 miles, however, the Just Giving
Activity Centre at Trent Lock. While I was there, a lady page isn’t doing as well as last year.
came up to me and said that she remembered me
Thu 28th The new term of classes started in
when I was staff and she was only a Girl Guide. She
Sandiacre, however, attendance was low with people
told me who she was and that she had Fibromyalgia.
having appointments or being on holiday.
So later we slipped away into the staff hut where it
was quiet for a 1-2-1. It was quite an emotional day. Fri 29th Peter and Opkar will complete part 4 of
It’s really hard to process time when you see the their Mental Health First Aid course.
children that you have worked with, all grown up In the next edition find out how our World Tai Chi
and with children themselves. I got home and my and Qigong Day event went to finish off April and
invitation had arrived! we have lots of exciting events to attend in May.
Week 4
Mon 25th John, Karen, Opkar and myself attended
a partnership networking workshop at the Volunteer
Centre, looking at the barriers and needs of disabled
and long-term illness sufferers to get active. We left
the meeting and went straight to run the Monday

Fibromyalgia Magazine • June 2022 • pagesixteen

 What is it like to Live with Fibromyalgia?

Fibromyalgia is a disorder that causes severe chronic and it can be so difficult to motivate yourself to
pain and is still far from being comprehensively leave the house.
understood by doctors and researchers. Those
When you have fibromyalgia, it can be difficult to
who live with fibromyalgia suffer from extreme
balance your activities and work commitments. You
fatigue, pain all over their body and brain fog, more
never know how much energy you are going to
commonly referred to as fibro fog.
have on any given day, so it is optimistic to commit
Fibromyalgia is an invisible illness and many to an array of activities when you are not 100%
sufferers outwardly appear to be fine. This can sure if you are going to be physically up for the
make it an extremely difficult disease to live with as challenge. If you overexert yourself one day you
it can be hard to explain the illness to your friends then may not have enough energy to fulfil your
and family. commitments over the next few days.
Fibromyalgia is especially difficult to describe to Sleeping can be a huge issue if you suffer from
your family and friends because the symptoms fibromyalgia. Getting to sleep can be so tough
vary in severity each and every day. It is hard to because of the relentless chronic pain and the
articulate the impact the condition has on your anxiety that results from both the pain and lack
life and state of mind. When you have to cancel of sleep. This can you leave you feeling restless
plans because of your illness, it is very tough to for extended periods of time and the tiredness can
explain to your friends and family why you were begin to have a negative influence on all aspects
not able to attend parties or milestones in their of your life.
lives. Fibromyalgia can leave you extremely tired
Fibromyalgia Magazine • June 2022 • pageseventeen
Fibromyalgia impacts the central nervous system,
and this means that the pain your body is in is
amplified to a horrific level. Many fibromyalgia
patients experience shooting pains similar to an
electric shock on a regular basis and they can even
be prolonged. It can be extraordinarily inconvenient
if they occur during a work meeting or during an
event you should be enjoying.

Fibromyalgia remains to be somewhat of a mystery

disease. It has yet to be deciphered precisely what
causes fibromyalgia and as a result, it can be
almost impossible to properly treat fibromyalgia
and patients are often left to try to find their own A pet can be a great idea if you are lonely or
solutions using natural remedies or therapies. struggling to cope with your fibromyalgia. A pet
There are still many doctors that are so unfamiliar can force you to exercise and get out of the house
with fibromyalgia as a condition that they do not and they are also amazing companions, and they
even believe that it is a real and extremely serious are great company. They can provide you with a
condition. This means that even if you are pretty friend in these lonely times and can give you the
certain that you do have fibromyalgia, actually motivation to get out and about.
getting a diagnosis so you can be properly treated One major issue with fibromyalgia, is that you never
can be a marathon which is extremely arduous, know when you are going to have a fibromyalgia
tiring and time consuming. induced flare up. When your fibromyalgia flares
up it can be almost impossible to commute to
Many doctors often tell fibromyalgia sufferers that
work let alone work hard for an entire day. Even if
the do not know what is wrong with them and some
you are just sitting at a desk all day, it can still be
poor patients even get sent home without a referral
unbearable when you are going through a flare
and not even a suggestion of how to try to find out
up. Throughout this year, working from home has
more about their condition. Trying to understand
become common in many industries and if you are
exactly what is going with your body can be a very
a fibromyalgia sufferer it is important to speak to
lonely ordeal, especially if the medical professional
your boss about how you can organise yourself
designated to help you is not providing you with
to ensure you can work from home whenever you
any answers or even solutions.
deem it to be necessary.
Sometimes even getting out of bed when you have Possibly the most frustrating symptoms of having
fibromyalgia can be a real struggle. When you fibromyalgia is brain fog, more commonly known
have aching muscles and you have not got much as fibro fog. On particularly bad days it can feel
sleep for the last few days, finding the motivation like you are living in a mist of confusion and cannot
can be hard. This feeling can last throughout the get yourself together. The worst part of all is that
day, leaving you totally exhausted by the end of it feels like there is nothing you can do to pull
the day. Often the pain does not cease, and many yourself together. Fibromyalgia can make your
medications do not seem to have an effect. life ridiculously challenging, but it can enable you to
Some people who have fibromyalgia find that their appreciate the good days more than you otherwise
body does not regulate their body temperature as would.
well as it once did. In the winter many people find it
to be extremely cold and this makes them reluctant
to leave the house.

Even though your family and friends are aware of

your condition, it can still be hard to understand how
dramatic an effect the condition has on your life and
how you feel day to day. When you consistently pull
out of dinners, events or meet-ups after a certain
period of time the invites begin to get lost in the
post and you are left feeling even more isolated
through no fault of your own.

Fibromyalgia Magazine • June 2022 • pageeighteen

Living with Fibromyalgia at The Healing Within
www.thehealingwithin.co.uk

What Does Healing Mean When You

Have An Incurable Illness? By Katie Zulak
I remember sitting in the doctor’s office when he said Latin and originally meant “care, concern, trouble”
“I think you have a condition called Fibromyalgia.” and came to mean treating someone medically in
He looked down for second and then back up at order to eliminate disease.
me, “I know this is hard to hear when you are only
The Cambridge English dictionary defines healing as
25, but we don’t have a cure for your syndrome,
both “the process of becoming well again, especially
only strategies to help manage it.” It’s hard to get
after a cut or other injury,” and “the process in
your head around the idea that there will be no
which a bad situation or painful emotion ends or
curing of your illness.
improves.” The original root of the word is Germanic
So, surely we can’t talk about healing an incurable and meant “to restore to wholeness.”
syndrome? To answer that, we need to distinguish
Eliminating disease versus restoring to whole health
between curing and healing.
are very different goals when you apply them to
The Cambridge English dictionary defines curing fibromyalgia. It’s true that we don’t have treatments
as “to make someone with an illness healthy again” that can completely eliminate the presence of
and “to solve a problem.” The word comes from fibromyalgia in the body, and so curing the

Fibromyalgia Magazine • June 2022 • pagenineteen

condition isn’t possible. But if we instead talk reduce pain intensity and increase pain tolerance.
about improving well-being or restoring a sense Sadness, anger, guilt and depression can make pain
of wholeness then, yes, I believe that healing is more severe and lower pain tolerance (Practical
possible. Pain Management).

Let’s go back to definitions for a moment. In fact, the International Association for the Study
of Pain now define pain as an “unpleasant sensory
Today, health is defined as “ the condition of the and emotional experience” (Healthline). So, focusing
body or mind and the degree to which it is free from on mental, emotional and spiritual healing, as well
illness” in the Cambridge English dictionary. Not as physical healing, is a chronic pain treatment
surprisingly, Heal and health are related words. In validated by ancient understandings of health and
old English, health meant “wholeness, being whole, healing, as well as modern medicine.
sound or well.” So, in the past, health meant more
than just the absence of injury or illness. Being We can describe “wholeness of personhood as
healthy was a sense of completeness, in mind, body involving physical, emotional, intellectual, social, and
and soul. Healing was the process of restoring that spiritual aspects of human experience.” Illness, by
sense of wholeness and well-being if it had been causing loss and isolation, can take away elements
disrupted by disease or injury. So, If we look at of self, especially your old self, that together make
healing and health in those terms, then I think it is up the feeling of being complete as a person. Self-
possible to heal if you have fibromyalgia. determination theory offers one way to understand
our mental and emotional needs. It explains that all
The practice of medicine has gotten away from people have three basic psychological needs for
healing as its primary purpose. “Physicians, trained emotional well-being (Very Well Mind):
as biomedical scientists, have focused on the
diagnosis, treatment, and prevention of disease. autonomy: being the author of your own story,
In the process, cure, not care, became the primary making your own choices
purpose of medicine, and the physician’s role
competence: having a sense of accomplishment,
became “curer of disease” rather than “healer of
learning new skills
the sick” (Egnew).
relatedness: feeling connection and attachment
Cutting edge science keeps showing us that pain is
to other people
both an emotional and physical experience, which
reinforces the ancient holistic sense of health. By finding new ways to meet these needs, we can
Pain psychologist Dr. Beth Darnell says that “the start to heal from illness losses. Everyone will have
areas of our brain that are associated with sensory their own definition of what a “sense of wholeness”
perception, they share real estate with the areas means to them. Here are the aspects of a ‘whole
of our brain that are involved in the processing of self’ that matter most to me, and developing them
emotions” (quoted in Healthline). has been part of my healing journey:

In other words, pain is processed in the brain by

both centres that perceive bodily sensations and autonomy:
centres for experiencing emotions. Brain images
show that as pain moves from acute to chronic, • ayourself,
new narrative: telling a new story about
what you’ve learned is most important
“the pattern of neurological synapses go from an to you, how you’ve changed and who you are
acute pain centre to more the emotional centre now
connected with the limbic system” explains Dr.
Hanscom (quoted in Healthline). • personal growth: being self-compassionate;
developing inner character, and knowing yourself
Emotions can affect the experience of pain. better, such as becoming more patient, stronger,
Laughter, falling in love, feeling gratitude, cultivating practicing gratitude and being more present
calmness and many other positive emotions can (and recognizing your self-growth)

Fibromyalgia Magazine • June 2022 • pagetwenty

competence:
our communities, whether meeting online,
providing support online, connecting with faith
congregations, joining a meetup of likeminded
• cultivating skills and seeking enriching
experiences that lead to satisfaction and
individuals such as a book club or movie
aficionado group, or going to a support group
enjoyment such as making art, music, creative
writing, crafting, styling fashion or beauty,
How do you define ‘wholeness’ and how would
gardening, singing, learning a language, taking
restoring your sense of whole personhood be
a course, birdwatching
part of healing while living with fibromyalgia?

Katarina blogs at SkillfullyWell.com

References:
Egnew, Thomas (2005). ‘The Meaning Of Healing’,
Annals of Family Medicine 3 (3) p. 255 – 262.
Doheny, Kathleen. ‘The Interactions of Emotions
and Chronic Pain’, Practical Pain Management.
Radcliffe, Shawn. (2014). ‘For Pain Patients
the Physical and Emotional are Intertwined’,
Healthline. Retrieved from www.healthline.com
Very Well Mind. (2017). ‘What is Self-Determination
Theory?’ Retrieved from https://goo.gl/cQ8mzy

• contributing beyond yourself and making

meaning through personal effort: traditionally
work or volunteering, but also providing support
to others who might be struggling with illness
through blogging and social media, fostering
a pet

relatedness:
• doing our best in our life roles as spouses/
partners, parents, siblings, or children within our
families, or being reliable friends; connecting
more deeply through being present or talking

• self advocating or setting boundaries within

difficult relationships, reaching out within

Fibromyalgia Magazine • June 2022 • pagetwenty-one

 Terrible Machine
by Paul J. Radford
You see this terrible machine
It’s been working for centuries
Oiled by the blood and spite of good men
For castles, palaces, and penitentiaries

You see this terrible machine

Its cogs be not fit
But forced into place, by a nameless face:
For a pardoned illicit profit

You see this terrible machine,

It turns and turns and turns
No matter the price, nor the pain
As it is not them, but he, who yearns.

You see this terrible machine

It’s operated by deceitful cliques
Who stand proud upon their beautiful hills
Waving down upon the lunatics

You see this terrible machine

Forever it shall weep,
Like a starving child or a slaughtered lamb
Nevertheless, the feast must reap

You see this terrible machine

It runs for avarice desire
No heed, nor woe, no plead, nor foe
Sommer work; tax; grave or pyre.

You see this terrible machine

Yes, its parts do expire
But it spawns yet more pawns
Fuelling its despotic hellfire

You see this terrible machine

To which that you rely
Like a fish swimming in a glass bowl
You have no choice, but comply

You see this terrible machine

And your pitiful glass cage,
You do not see that there’s a wider ocean
Of liberty and sage.

Fibromyalgia Magazine • Junel 2022 • pagetwenty-two

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