Table Of ContentSupport for the FM Family
F I B R O M Y A L G I A
M A G A Z I N E
UK Fibromyalgia Year 22 • Issue 8 • August 2022
including
Why women in pain are turning
to medical cannabis
Kayleigh Roberts and Christine Harris
by Katarina Zulak
The Question Behind the Pacing and Resting
Regimen: Who Am I When I Don’t Have Energy
To Do Anything?
When you first develop fibromyalgia, or another these ‘lifestyle changes’ in your life, and how rarely
chronic illness, like long covid or ME, there are many this aspect of ‘managing’ illness is talked about.
practical lifestyle changes you can make, mental and
At a simplistic level, how you choose to spend your
physical adaptations that can stabilize, and even
time reflects who you are, the person you try to be.
improve your symptoms. I’ve been in an ‘advisor’ role
As a healthy person, you likely devoted your time
recently as people close to me have been unfairly,
or energy to what was important to you, whether
and painfully, struck with chronic fatigue. In my
that was being with family, being successful at work,
advisor capacity, I’ve shared everything I know about
having adventures or travels, connecting with friends,
the art and science of pacing, the vital importance
creating a home, getting outside as often as possible,
of rest and relaxation, and how to understand the
relaxing, expressing yourself creatively, or just having
mind/body nature of these illnesses, especially
fun. We all have judgements about the lifestyles
accounting for the role of stress on symptoms. But
of others that reflect our own values, such as “no
after my conversations, I’m struck by how these
one works hard anymore, they think they can just
technocratic terms, like ‘lifestyle change’ and ‘self-
waltz in, do the bare minimum, and get promoted”
management’ and ‘pacing’ can obscure the real
vs. “thinking work is the be-all-end-all is archaic,
impact of living with of illness, how these changes
we need to make space for the important things in
go to the heart of who you are, how you choose to
life.” However humorous, we really define who we
live your life, and what your expectations of yourself
are through these choices, which reflect our values
are. We can’t overstate how much your mindset
and self-expectations.
really determines the way you receive and apply
Fibromyalgia Magazine • August 2022 • pageone
It’s so difficult to watch someone come to the and miserable failure. Underneath it all, I think I was
realization that the life role they feel most defines most afraid of not living up to the expectations I’d
who they are, whether that’s being an athlete, an had for myself, or that others had had for me.
entrepreneur, a parent, or an advocate, will never
There are always other people who are seemingly
be the same again because they just won’t have the
more successful than you are, no matter what
energy to do it. How do you express your personality
you accumulate or accomplish. Just like there are
or your values, how can you be ‘yourself’, when you
always other people who struggle more than you
can barely do anything at all? That’s the despairing
do. Reframing comparisons in order to feel grateful
question lingering in the background when a newly
for what I can do has made me better able to
diagnosed person begins to grasp the rigidity
appreciate the small moments in my daily life. That’s
inherent in the pacing and resting regimen required
not to say you aren’t entitled to feelings of grief.
to ‘self-manage fatigue’. There needs to be space to
You are! However, we do have a choice about what
accommodate the feelings that accompany these
perspective we take, and who we compare ourselves
realizations, the anger and the sadness.
to. I may not be the career-driven adventurer
At the same time, we are where we are with chronic I wanted to be in my mid-20s, but I have a cozy
fatigue, and there are helpful mindsets that can home, with a husband I love, a crazy cat, and several
see us move forward, towards a new sense of self hobbies, like writing, that I find great enjoyment in.
despite illness, and then there are unhelpful mental That’s more than a lot of people, like millions of
traps that can get us mired in the darkness of our Ukrainian refugees, have right now.
grief. I always try to explain that there is hope,
The devil on your shoulder may want to respond
encapsulated in a saying that I clung to after my
sarcastically, “Oh great, so at least I’m not a refugee
diagnoses: “it may not be the life you imagined, but it
or something.” But seriously, you could be; any of
can be a good life nonetheless”. If you become stuck
us could be. Acknowledging that doesn’t mean
in negative mental traps, then it becomes much,
your life is easy, but that there are almost always
much harder to use pacing as a tool to enable you
things to appreciate or be grateful for. This includes
to resume meaningful activities. This is the devil on
daily ‘lifestyle change’ tools that can make today or
your shoulder saying “What’s the point of resting or
tomorrow a little bit better.
pacing? Your life now sucks anyway, compared with
Learning to see the unhelpful mental traps I got stuck
everyone else’s, and there’s nothing you can do to fix
in for what they were, like negative comparisons
it.” In contrast, the angel on the other shoulder can
or success/failure thinking, was as important for
say “Take this meditation stuff seriously. If you rest
me learning to live better with fibromyalgia as all
before and after, you can have a nice coffee with
of the pacing, resting, and mind/body advice that
a friend. Won’t that make today so much better?”
I was given. There is a point to all that pacing and
One of the most common mental traps is the game
resting, in doing something small, but meaningful
of sizing up your life with illness against the lives of
today. It really doesn’t matter what Sally and Alex
your successful peers, or against your former life,
or Kareem and Alicia are doing.
in order to make negative comparisons. I did this all
Expectations of what you’re “supposed” to have done
the time when I first got sick. I felt sad, bitter, and
or achieved will only bedevil you if you cannot let
de-motivated when I compared what I was doing with
them go. On the other side of this learning curve,
Sally and Alex, who just bought a house after Sally’s
you don’t need to define yourself by what you do
promotion, or Kareem and Alicia, who just went
with your time, but by your character, your tenacity,
on an adventure vacation. From this perspective,
your ability to live in the present, and appreciate
whatever improvements I made seemed so trivial
the simple pleasures in life, or whatever lessons
that they were pointless. What was enjoying one
about yourself you’ve learned through living with
pleasant drive with my husband, after learning first-
fibromyalgia. No one can take that away from you.
hand the benefits of prophylactic afternoon naps,
compared to the busy, successful lives of “everyone”
around me? This is the classic success/failure trap:
either you are wildly successful in life, or a complete
Fibromyalgia Magazine • August 2022 • pagetwo
Is It Hot Enough For You? by Helen Watts
As I sit typing this column it’s the hottest PW “I used to feel better in the warmer weather
day of the year and I am uncomfortably but the recent very warm spell has made me feel
hot and can’t seem to cool down at all yet sick and in more pain. The cold always brings pain
everyone else in my household is coping just and tension”.
fine and can’t understand why I’m so hot so I
AJ “Worse in hot weather. I used to love hot sunny
wondered if this is a Fibro thing so turned to
weather but not since having Fibro. It’s particularly
the Facebook groups and asked the question.
bad if it’s also humid. Anything above 18 degrees I
now find very difficult to cope with whereas I’d be
MS “I feel it’s too hot for me now. Even though I
fine at 26 degrees before. I also find I’m sensitive to
find it difficult to control my body temperature. It
even a very slight increase in temperature - it will
has only been 12 degrees so far. I cannot get cooled
set off a hot flush. This can happen with ridiculous
down when trying to sleep. The heat makes me feel
things such as walking up to a kettle that’s just boiled,
ill, weak and nauseous”.
standing near a saucepan or running a bath. I have
some lovely jumpers that I can no longer wear even
SG “I find slightly more relief in warmer weather”.
when visiting Scotland in the depths of winter!”.
WL “I hate the heat, it’s too hot for me already, I
ELCC - “I’m better in the hot weather, yes I hate the
have my fan on all year round, in the winter I turn it
sweating, but I feel better, literally feel the warmth
off & on throughout the day & night as needed. But
from the sun and need to be outside, I find being
when it’s hot, I can’t cool down. I prefer the autumn
cold so painful, I can be dressed in trousers and
winter months”.
jumper and have two blankets over me and be cold
LP “ I find some relief when it’s warm but also find I and in pain, yet my husband and son walk around
can’t control my body temp anyway so always feel in shorts and T-shirt, it drives me crazy”.
hot to the point sometimes feeling on fire, even in
winter I don’t feel cold”.
Fibromyalgia Magazine • August 2022 • pagethree
LR - “I get heat stroke without even going in the sun. temperature., unable to sleep and my legs! I can’t
I’ve always loved sitting in the sun, but the other day keep them still! The cold weather makes me feel
when it was. 26° I woke up with beat stroke, when it’s so ill”.
hot, if I’m in the sun for 30 mins total I end up being
ED - “Heat really affects me but I have auto immune
violently ill in the evening. I’ve been living in flare
disease as well”,
for 3 straight weeks. I thought winter was bad, but
SD - “The hot weather makes my pain worse, all
starting to think it’s both in different ways. Different
my joints tend to swell up, it hurts to sit, and hurts
symptoms at different times of the year”.
to lie down. I also tend to break out in small blisters
AW -“I feel better when it’s warm but my fatigue
on my fingers and palms of my hands. and they
is worse”.
become so itchy. and for some reason I tend to
MC - “My pain isn’t quite as severe in warm weather sweat so much more”.
but it causes me to suffer more with swelling
CM - “I have less pain during hot weather, but
especially ankles and feet. Also my hyperhydrosis
that may also be because I tend to be less active.
goes full throttle. It’s so embarrassing to leave the
Cold weather certainly increases the incidence of
house as I’m constantly dripping from sweat”.
neuropathic pain”.
SW - “I have fibro and HMS aswell as other health
LI - “I’m also melting in the heat I was always a
issues. So personally I feel worse if it gets hot. I am
heat lover, I am still but I do find I overheat all the
so fatigued and genrally struggle more, I swell alot
time now”.
too”.
KI - “The heat itself is ok but where I don’t move
CA - “The warmer weather helps with the joint
around so much when it’s hot due to my energy
stiffness, but I struggle with controlling my body
levels seem zapped in heat which in turn makes me
temperature and constant fatigue. I love the
stiffen up and hurt all over”.
sunshine it helps lift my mood but this year I have
AC - “I find as long as I really pace myself and take
been sweating profusely, hair is soaking wet all the
things easy I’m ok and being in lockdown has meant
time.
I do not have to be anywhere and can take my time
WDW - “I find all extremes of change affect me so if
so not finding it too bad”.
it’s very cold I will suffer or if it’s very hot I will suffer
also if it’s very damp too!!! So my favourite season
since getting fibro is Spring and Autumn”.
KAR -“My pain lessens in the heat but then I over
heat because I can’t control temperature. It also
worsens my asthma . The sun helps with my vitamin
deficiency and my depression”.
MN - “I’m better in the hot weather, however I’m
likely to suffer from headaches and migraines more”.
SF - “I love the warm weather. Get all the natural vit
d while you can. It relieves my arthritis symptoms
though if I get one of my headaches. I can’t stand the
sunlight and it makes me very sad. I love sunbathing,
being outside feeling the breeze , reading, drawing
From these comments it seems most of us have
and not being locked up in my tiny box”.
some issues with this hot weather and overheating.
VH - “I love the sun,but I come out in blisters that Why not come along to the Facebook groups and
scar on my hands and arms, I also get sweaty and join in the chat. I hope everyone finds a comfy
my ankles swell and I find it hard and painful to walk”. spot this summer in the shade with a nice cool
drink.
JS - “Hot weather helps with fatigue, but I really
can’t stand the heat, and cannot control my body
Fibromyalgia Magazine • August 2022 • pagefour
Letting Go
by Sarah Wall
It’s a funny old thing; life. What’s funnier is how the bog standard stress of work. I was ill, all of the
things can change in a flash and everything you time, whether at work in the week or at home at the
thought you knew and wanted from it takes a weekends – I just couldn’t escape it. After multiple
dramatic turn, but then again that’s what chronic absences from work, each one increasing in time
illness does; changes everything. scales, my ability to function was getting more and
more difficult and it was with a heavy heart I left
When I was younger I wanted my future to consist
my job. It was around a month later after many
of the stereotypical life really, a successful job
hospital trips I was diagnosed with fibromyalgia.
earning good money, a place of my own, marriage
and a couple of kids to boot. Yet here I am at the Fibromyalgia and CFS weren’t the first diagnoses
age of 32 with none of those things and now all I I received in my life, as at the age of 18 I was
want for my future is just that; a future. diagnosed with kinetic Tourettes syndrome. Living
with Tourettes I already knew about living with an
I was in my late twenties when I was eventually
illness that didn’t gel with treatment, but that didn’t
diagnosed with fibromyalgia and CFS. Like most
stop me believing there would be a cure or at least
people I had spent several years being unwell with
a treatment plan for fibro. I was in the prime of my
constant trips to the doctors ending with them
life, surely there had to be something I could do to
telling me I was stressed. I don’t deny I was stressed,
get my life back the way I knew it, surely there was
I had a high pressured role in a HR department but
more than this?
I was good at what I did, what I felt was different to
Fibromyalgia Magazine • August 2022 • pagefive
Whilst the physical symptoms of chronic illness at You can’t start the next
times can be debilitating, it was and still very much
chapter of your life if you
is at times the mental side of things that have been
the biggest pill to swallow. For the four years or keep re-reading the last one –
so after my diagnosis I fought against it, unable
McMillian
to except this was my new life. A life that consisted
of being constantly exhausted where every simple
People talk about acceptance like you can grab it
task seemed to be a mammoth mission, a life that
in an instance and suddenly everything is better
I hated and most of all I hated myself for. Once
but it’s much harder than that. Having people tell
upon a time my achievement for the week would
you to accept your condition makes you want to
have been completing a chapter in my dissertation
scream in their face that if it was that easy why
or organising multiple training events for high-
have can’t I do just that?
end managers and now my biggest achievement
was leaving the house every few days to get my
Acceptance is there waiting for you to embrace it
vitamin D.
but only when you are ready to do so. I accepted
I wanted the life I had before my illness, the one
the fact I was ill fairly early on in my health journey
that was able to work and have responsibility, the
but it has taken me 6 years to accept I have to let
one where people saw me as someone and not
go of my old life in order to move on with my new.
just that girl who thinks she is ill (because let’s face
it even with a diagnosis people still don’t believe
With this in mind I wanted to share with
there is anything wrong with you). My desire for
you my top tips for letting go:
my old life was so strong I went back to work,
convincing myself that it was work that had been
1. Learn to value yourself –The ability to let go will
the problem and by making small changes it would
only stem from an understanding that the life you
solve everything
once had is no longer healthy for the life you are
So I changed my workplace, the hours and the
now living. To understand this, you have to listen to
level of work I was doing and my worst nightmare
your body’s needs and respect them. By doing this
came true because nothing changed, in fact I just
you have to value yourself and believe you become
got worse, my body couldn’t cope and I felt like
above everything else in your life no matter what.
a failure. I felt irritated with my body for just not
getting on with life and carrying on like everyone
else around me. I had pushed myself because I was
in denial and I was grieving for the life I once had
but more than that, I was grieving for the future I
had planned.
They say there are five stages of grief; denial,
anger, sadness, bargaining and acceptance. For
most of my grief regarding my illness I have lived
in the denial stage, I didn’t want to believe this was
my life and that my future would have to be altered
in order to cope with it. Anger and sadness have
been emotions that I have dealt with since my 2. Learn about your conditions and the impact
diagnosis and by trying to go back to work I was on your health – With fibro it is very easy to bury
trying to bargain with myself what my limitations your head in the sand and refuse to get to grips
really are. Even with my future plans I had tried with it, but knowledge is power. By researching your
holding on to the notion that if I could just adjust condition and your symptoms, it can actually teach
things slightly in myself then I would still be able you things that the doctors can’t and that’s how by
to have the life I wanted, achieve the goals that I continuing in the same patterns can really affect
had. The only problem with that being the life that I your health. Many medical people will encourage
wanted and the goals that I had, were now too big
you to keep going as you are, not understanding
a reach with a body that doesn’t play ball. So what
that it the keep going mentality which makes you
now?
symptoms worsen.
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3. Write a gratitude list – When our lives change 6. Speak to someone – It is all very well making
it is really easy to focus on the things we have lost the decision to carve out this new life and kiss
rather than the things we still have or have learnt. goodbye to the old without a care in the world but
By writing a gratitude list of the things you are that’s only if you don’t care. If externally you seem
grateful in your life; it can help to shift the dark fine but internally you are a wreck, unable to come
clouds that may have gathered. Even writing about to terms with your loss then the best medicine is
fairly basic things, such as being grateful for the speaking your truth. Whether it be someone you
air you breathe or the ability to hear, can start to trust, or a counsellor talking to someone honestly
make you see that although you have left things about your emotions regarding your loss will help
behind, you still have things in your life to feel good you to let it go. If talking to someone is really out the
about. question then write it down and get your feelings
out on paper, just as long as it is out of your head.
4. Take each day at a time – In my experience the
second I start thinking too much to the future, it is
then I digress and start reminiscing about the life I
have lost before bargaining with myself. Therefore
to stop this pattern happening I try to take one day
at a time to avoid overthinking.
Cry if you need to cry, be mad, be sad
but remember to be proud of yourself
too because by letting go you are
accepting who you are – fibro and all.
5. Set yourself new goals – To let go of your old
goals is extremely difficult especially if they were
something you really wanted to accomplish. By
setting new goals you are still giving yourself a
focus and you can alter them in line with what is
important to you now. Rather than focusing on big
future goals, you could now set yourself smaller
day to day goals which are not only easier to
reach but still give you the sense of achievement
you craved in your old life.
Fibromyalgia Magazine • August 2022 • pageseven
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Fibromyalgia Magazine • August 2022 • pageeight
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Food and Mood
Depression is commonly experienced in Fibromyalgia neuro-inflammation; it is known that this can affect
and this is something that I often see with my clients. mood and depression and also have a significant
Not really surprising as the symptoms of fibromyalgia effect on cognitive function. Chronic pain and fatigue
can really get one down, but there is lots that we can which are common fibromyalgia symptoms, have also
do from a dietary perspective to support mood and been linked to neuroinflammation
some of those strategies may also support the general Nutrients that research has shown are important for
symptoms of fibromyalgia. repair and integrity of the digestive lining include:
The neurotransmitter serotonin is involved in balancing Vitamin A, Vitamin D3, L-Glutamine and Zinc,
mood and happiness and low levels have been particularly zinc carnosine.
associated with depression. Research has found that When we have inflammation, we also see higher levels
people with fibromyalgia have abnormally low levels of oxidative stress and this can affect overall neuronal
of serotonin in their brains. Serotonin is produced from function and may be a risk factor for depression.
the amino acid tryptophan which is found in protein Reduce inflammation by increasing omega 3 fatty
rich foods such as meat and fish, beans and lentils acids from oily fish, chia and flax seeds, walnuts and
and particularly in walnuts, oats, pumpkin seeds and dark leafy green vegetables. Consider using anti-
bananas, so it is important to try and include these inflammatory foods such as turmeric (curcumin)
foods in our diet. and ginger in your cooking and increase vitamin E
It is thought that approximately 90% of Serotonin is containing foods such as avocado. Avoid sugar and
produced in the gut and gut bacteria have a strong refined carbohydrates as much as possible as these
hand in its production. It is thought that up to 90% of are considered to be highly pro-inflammatory foods
patients with IBS, something that I find is common in and are also the main source of fuel for opportunistic
Fibromyalgia, also experience anxiety, depression or (or bad) gut bacteria.
other psychiatric disorders. Therefore, the health of
Low levels of certain nutrients have also been
the gut always should be considered for anyone who
associated with depression. Vitamin D deficiency
is experiencing depression.
is common in populations that live in the Northern
Consuming a wide variety of vegetables and fermented Hemisphere. Low Vitamin D has been associated with
foods such as kefir, kombucha and sauerkraut can low mood but the symptoms of low Vitamin D also
support our beneficial gut bacteria populations. You encompass many of the symptoms of Fibromyalgia.
could also consider taking a probiotic, beneficial If you are someone who’s mood is lower in the winter
bacteria supplement. months, then it is definitely worth asking your GP to
The integrity of the digestive tract is thought to play a check your Vitamin D levels to ensure that they are
role in both fibromyalgia and depression, because if optimal. Some GP’s are not keen to do this, and there
the digestive lining is compromised by inflammation, are several companies that will check Vitamin D levels
oxidative stress and damage, larger molecules can very cheaply.
pass through into the blood stream, triggering systemic Research has found that low B Vitamins status is
inflammation. This is commonly known as leaky gut. also a risk factor for both depression and fatigue. B
Research has shown that when the integrity of the gut Vitamins are found in Salmon, green leafy vegetables,
lining becomes more permeable, so too is the integrity wholegrains, eggs, liver and other organ meats, beef
of the blood brain barrier. Therefore, molecules which and shellfish.
should be kept out of the brain can cross and trigger
Fibromyalgia Magazine • August 2022 • pagenine
