Fibromyalgia Magazine - June 2022

26 Pages·2022·7 MB·English

Support 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 • 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 Kina thyoleseig dhis cRuossbioenrst, sso amned in Ctehrersistitnign equ Hesatirorniss 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
Enjoy!
form of Feta and Pine nuts. Protein foods are broken
FFiibbrroommyyaallggiiaa MMaaggaazziinnee •• MJuanye 2 2002222 •• ppaaggeetthhrreeee
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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
FibFroibmroymalygaialg Miaa Mgaagzianzei n• eF e• b Jruunaery 2 2002222 • •p paaggeessixix
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
Treatments include medication such as painkillers and
and extremely difficult to live with. Other symptoms
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