Fibromyalgia Awareness - Laura Spoonie

Fibromyalgia Awareness 🦋💜

Hey my Lovelies,

MAY is an extremely busy month, full of physical and mental health awareness causes. One of the few causes that I’m raising awareness for this month is Fibromyalgia. May 12th is Fibromyalgia International Awareness Day where light is shone on this soul-draining condition to educate people who may have never heard of such an illness and also for fellow sufferers to reach out to each other and find a community that can become a part of their Support System.

Last year, on Fibromyalgia Awareness day I wrote a poem called, ‘Fibromyalgia & ME‘ It was words that came to me naturally, as I described the effects this chronic condition has and the sensations that I and so many others go through.

Follow me on my Instagram to keep up with the visual posts I’ll be making about Fibromyalgia throughout the month

What is Fibromyalgia?

Fibromyalgia also called fibromyalgia syndrome (FMS), is a long-term neurological condition that causes pain all over the body. It’s estimated that nearly 1 in 20 people may be affected by fibromyalgia to some degree. One of the main reasons it’s not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose.
 
As well as widespread pain, people with fibromyalgia may also have:
  • Increased sensitivity to pain
  • Fatigue (beyond the state of tiredness)
  • Muscle stiffness
  • Insomnia – difficulty sleeping
  • Problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration/cognitive problems
  • Migraines
  • Irritable Bowel Syndrome (IBS) – a digestive condition that causes stomach pain and bloating
  • Stiff joints & crunching bones (feels like bones shifting and cracking)
  • Sensory sensitivities – light, touch, noise, scents
  • Blackouts/Faints
  • Convulsions/seizures
  • Night Sweats
  • Skin rashes/sores/bruises
  • Nausea
  • Intolerances
  • Muscle spasms
  • Irregular body temperatures
  • Hair loss, extremely sore scalp
  • Disorientation & so many more symptoms going on in just ONE body!
The exact cause of fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body. It’s also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents. 

Some factors that trigger Fibromyalgia symptoms or worsen a flare-up:

  • Weather changes
  • Menstrual cycle
  • Other chronic illness flare-ups
  • Physical exertion
  • Stress
  • Anxiety &/or other mental illnesses (Fibromyalgia can also cause depression because of the pain and isolating nature of this illness)
  • Chemical smells/products
  • Food
  • Injuries – clumsy, accident prone

 

Words from Fibro Warriors

What’s a symptom/s of your Fibromyalgia that you want to highlight & make people more aware of?

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This is what my fellow Fibro Warriors had to say…

Tazari B – “Fibro fog. Feels like my brain is mashed potatoes. Sun/light sensitivity. Also sometimes my skins turns red and starts burning for no reason at all.”

Shilo – “F-A-T-I-G-U-E 😴😴😴

Rachael Hope – “Noise sensitivity. I can barely concentrate on what I’m doing if people are talking incessantly around me 😂 also heat sensitivity!! Lemme open a window people I’m sweating 😅

Blue Ivy’s Nanny – “That it sometimes feels like my entire body is one big bruise and even the slightest touch hurts😩

Nicola Lord – “That it creates a whole lot of other conditions like heart, fits, spasms, temperature, jaw, stomach and more! It isn’t as simple as just Fibro it comes with a shed load of other complications!”

Georgie – “touch and noise sensitivity and auditory processing issues – hell, it took me years to even realize that those symptoms were connected to everything else I was experiencing!”

Shan Ellis – “Heart palpitations and constant stabbing pain in my back, legs and feet. I don’t know which is worse 😂

Ariana Allen – “Sometimes it feels like nails are being hammered through my toes and fingers. Burning sensations in shins. Sore neck. Fatigue-induced dissociation.”

Julie – “When I flare my muscles get fatigued sooo quickly…”

Ruth – “The blasted unpredictable fog please”

Kay Blake – “Fatigue. Fibro fog. Headaches. Problem regulating temperature. Burning and itchy skin. Being easily winded.”

Invisibly Me – “A good question! So many issues… aside from the most recognised ones where pain and exhaustion are concerned, I’d go for poor temperature regulation so I’m always cold, and brain fog & difficulty with concentration & memory.”

Beansbie – “My god, I feel like the pains imitate a needle being stabbed INTO my bones and then inject fire into them 😣

THE MEMORY LOSS/BRAIN FOG. I’m 19 and have to take notes on how to do my (relatively) easy job. I honestly feel like fibro has made it a LOT harder for me to absorb information and keep it. Ugh. I’m not excited for college again 😓😥 fibro has made me feel much more stupid tbh.”

Vantrice Taylor – “Night sweats, low-grade fevers, swollen lymph nodes, tremors, light, noise, and scent sensitivity, speech difficulties, brain fog, relentless fatigue, ibs symptoms”

Medical Medium – “Who with fibromyalgia doesn’t have stress? Stressful conditions cause the body to use more magnesium and a lack of magnesium tends to make stress responses more severe.”

Abi Jeremiah – “Fatigue, muscle spasms, fibro fog, nerve pain, regulating body temperature, numbness, burning sensations, sleep disturbances, etc. The emotional toll of all this. Not being believed or listened to even by Drs. Meds make you sleepy or numb, loss of career, identity & social life.”

Katrina – “Fatigue, depression, anxiety.”

Vania – “That I can be in pain all day ,one day & the next be up and going . But I’m not faking my pain and symptoms . ☝🏻

Lynn Meek – “Hand issues. Mid-flare, it’s hard for me to type due to nerve pain. Fingers don’t go where you want them. Also, every morning my hands are extremely sore and stiff. Issues with grip and strength. My hands are just awful.”

Ashley Rogers – “SKIN SENSITIVITY.

I’ve had to replace my sheets, my clothes, my washcloths, my towels. It hurts, otherwise, and this NEEDS more attention 😭

E-lee Treasures – “Muscle spasms & the Fibro-Fog r awful as well as chronic fatigue…”

Yasmin – “I am ALWAYS cold too! Even on holiday to beautiful Gambia I was drinking tea at the beach! Actually ridiculous.”

The Sickest – “My shins! This is my most common symptom. Shin pain, sound sensitivity, tenderness to pressure, and fibro fog.”

Jen – “Stomach/digestive issues, migraines, eye pain, vision problems, nausea, balance issues, weakness, nerve damage, hypersensitivity to noise, touch, smells; ptsd, anxiety, depression, suicidal ideation, vitamin d and b 12 deficiency, numbness, temperature fluctuations, etc…”

Candy Smith – “Chronic fatigue!!!!!!”

Lucy Bustin – “Feels like I’ve been kicked all over my back which wakes me up in the morning…”

Nick – “Lack of understanding by virtually everyone including medics. Being told you do know there’s nothing more we can do for you.”

Melissa – “That we really are in pain 24/7. It doesn’t stop for a second for a lot of us. It’s like having permanent broken legs arms, legs, feet and hips and every joint in your body is stiff. Every single day. Every single night. Every single minute of our lives.”

Mill J – “The constant pain. Nothing helps. Not drugs, booze, weed. In fact, weed makes me hurt even worse. Anyone else have this? . My body feels like I have been peeled, and every nerve is raw and burning – as in I hate clothes, touching, even a shower is usually painful. . JUST ME??”

Rainbow Fairey – “Even my ears hurt!”

Light as a Cloud – “The constant lack of mental, emotional and physical energy.”

AB – “Pain Fatigue Poor sleep”

Renee – “Extreme sensitivity to touch! Mostly upper back!”

Fibro Fudge – “Diet and yoga are not going to magically cure me. I’m lucky I have anything left to eat that doesn’t upset my stomach and able to move enough I don’t need a carer.”

Nesha – “Hands swelling. It’s the worst. Also those bruises that are purple (look abused) that randomly pop up”

Lucy – “Brain fog and body spasms! Omg. It’s the worse.”

Nikki – “No one I talks to believes me about fibromyalgia and brain fog and how bad brain fog can be. Also pain to the touch all over is my main symptom”

Carrie – “Costochondritis. It’s so bad right now. Nothing helps it. I just have to wait it out.”

Olga – “The brain foggggggg and the fatigue are my worse enemies and getting worse when I’m stressed 😩”

Check out Olga Chronics a fellow Fibro Warrior & Lifestyle Blogger on Youtube & SUBSCRIBE to her channel

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Raising Awareness

One of the main reasons for starting my blog and creating my Twitter and other social media was to feel less alone. This time last year I really wasn’t aware of how much people were affected by chronic pain and it actually breaks my heart to see so many people suffering. Being a part of the chronic illness community makes me feel a little less invisible due to my physical and mental battles and in the months that I’ve been able to connect with warriors and advocates has inspired and encouraged me to carry on fighting and speaking up about my daily struggles and also victories.

A few things you can do to raise awareness for Fibromyalgia this month:

  •  Write about “Fibromyalgia.”

Most people can’t differentiate one chronic pain condition from another. Write a blog post to educate those in your life on your condition.

  • Make your awareness posts public
  • Make it personal
  • Share awareness posts from other advocates/warriors
  • Take part in a fundraiser
  • Use hashtags and tags

For example, adding #FibromyalgiaAwarenessDay to your posts can help others in the FMS community find you.

  • Participate in awareness events

There are so many events and ways to get involved this month across social media and the blogging community.

  • Connect with other warriors

Connect with other Chronic Pain & Fibro Warriors on social media, find out about their journey and what helps them to get through their day. Make sure self-care is your main priority so you can participate without sacrificing your well-being throughout the month.

  • Be an ambassador

If you have the ability to get online and share posters, or tweet status updates, think of yourself as a representative for those who cannot. You are advocating for people who don’t have a voice, for those whose fights have come to an end, and for all of the individuals who might be diagnosed with Fibromyalgia in the future.

It can be difficult to be vulnerable and discuss your pain. You’re a courageous warrior and have overcome many battles that people don’t see and aren’t even aware of.

 

Everyone’s voice matters. Every single story matters. Your story is unique and can help change lives.

You are not complaining when you share your reality. You are not a burden just because you are burdened by pain. Your friends share their lives; there is no shame in sharing this important aspect of yours also.

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Support Groups for Fibromyalgia Patients

Many people with fibromyalgia find that support groups provide an important network where they can talk to others living with the condition.

Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia.

If you have any questions about fibromyalgia, call the charity’s helpline on 0300 999 3333.

The charity also has a network of local support groups you may find helpful and a online community, where you can find out about news, events and ongoing research into the condition.

UK Fibromyalgia

My Individual Disabilities Group – a moderated support group for people with Fibromyalgia (FMS), MEcfs, Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), Reflex Sympathetic Dystrophy (RSD), Lyme disease, chemical sensitivities, sleep disorders, brain disorders, Multiple Sclerosis and many other chronic illnesses

 


 

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If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of its symptoms, although they’re unlikely to disappear completely.

 

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My Fibro Story – Read HERE

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Thanks for stopping by.

Laura,

XOXO

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