This is my first post for many chronic illness awareness posts in May!
Fibromyalgia awareness day is on the 12th May, join millions of people all over the world who will be helping to raise awareness throughout May.
FIBOMY WHAAAATTT??? FIBROMYALGIA, pronounced, ‘FI BRO MY AL JAR’ , is a long-term (chronic) condition. It causes sensitivity to touch, increased pain levels in muscles and bones, (musculoskeletal Pain), tenderness, fatigue and cognitive disturbances.
Fibro = Fibrous Tissues (tendons & ligaments)
My = Muscle
Algia = Pain
In patients with fibromyalgia, it is thought that the bodies pain receptors in someone with fibromyalgia are exceptionally sensitive- fibro has links to issues with the central nervous system ‘related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body.’ – NHS People with fibro have increased pain sensitivity.
In autoimmune diseases, such as Rheumatoid arthritis, the body attacks its own tissues with proteins called autoantibodies, in the same way it would normally attack viruses or bacterial infections, the immune system instead attacks the healthy tissues. There are thoughts amongst scientists whether fibromyalgia could be an autoimmune disease but this is not confirmed. Rheumatologists are usually the people to diagnose Fibromyalgia, as they have to rule out other illnesses. Sometimes people go being misdiagnosed for a long time as their symptoms mimic other illnesses and vice versa.
Fibro is seven times more likely to occur in women than men although the reason for this is unknown. It is a common condition that usually occurs aged 30-50. I was considered young to be diagnosed just before I turned 17, I have interestingly only met one man with fibromyalgia but many many women.
Sadly fibromyalgia is not very well understood, with time we are learning more. I have done a post on fibro previously but I thought- since it is awareness month, it may be useful to share some more. There is sadly no cure for fibro although we are hopeful with improvements in scientific research, we may eventually have more treatment options, it’s cause is unknown although there are many correlations with people with fibro & previous injuries, illnesses, trauma and stress.
In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:
* an injury or infection
* giving birth
* having an operation
* the breakdown of a relationship
* the death of a loved one
– NHS UK
MY FIBRO STORY:
I broke my coccyx in 2017 when working, I slipped on wet floor, and knocked myself out. My initial worries when I came back round, were the pains from my head, an intense ache, it wasn’t until I got home that I realised I couldn’t walk without agonising pain. At times the pain was so bad I would find myself doubled over in pain, nauseous and faint. Time was the only treatment that was feasible for me to heal the damaged bone, there wasn’t much treatment to offer to heal the broken bone due to the position of it (being in-between my bottom & my back!) With strengthening exercises, it has healed to some extent with time and the muscles around it are slowly more responsive, (although it isn’t quite right and we suspect it could’ve healed in the wrong position slightly.)
Now… as someone with a beighton score of 7- I am very hypermobile. I used to be able to get myself into all sorts of positions due to hyper-flexibility in my hips. In the early months post accident, I had no movement in my hips or lower back at all. This is unheard of for me. From the fall, I experienced bowel & urine incontinence, hip impingement, intense nerve pains & numbness. Embarrassing. Scary. Painful. I still suffer many symptoms and struggle to sit or stand for long periods. Medical professionals believe this to have been what triggered my Fibromyalgia. ‘A traumatic event or injury’ It took me nearly two years to gain sensation in my buttocks. I couldn’t squeeze any muscles in that area at all- it was scary and embarrassing. (I CAN NOW HOLD FOR 8 SECONDS BEFORE MY BODY ‘SHOUTS AT ME’! Baby steps- this is an amazing improvement.)
I describe the pain as- if you were to stub your toe really hard on the corner of the bed and it takes your breath away, times this by 3 and you’re about there. It makes so much sense to the way my body responds to pains. I pull muscles and they ache like anybody elses’ would but the rest of my body will go into an intense meltdown from this. I cry like anyone else if I stub my toe, my hips lock or i trap my finger in the door. On days I am in a flare my skin burns- if you were to give me a hug, the pain can make me feel physically sick. If someone were to bump into me gently in the streets when I am experiencing pain it can make my body spasm and I cry. This is one element of fibro.
So, I was initially diagnosed with coccydynia- meaning coccyx pain;) I was then diagnosed a few months later with Fibromyalgia and hypersomnia. This made sense. It affected my ability to study my A levels massively! I was on the up from recovering from mental health issues and this set me back emotionally! Since breaking my coccyx, pain started in my coccyx, spread down to my hips, sciatica, knees, shins, ankles and up to my lower back shoulders, lymph nodes, arms, nerves in my forearms, jaw etc…I had always suffered back pain due to having large boobies;) This pain was different- it felt deeper inside my nerves and less like a strength issue from pressure from the weight of my breasts. I’m fortunate in the fact I find my fibro symptoms to be mainly under control now although I do have flares every two weeks or so. Infections & illness are likely to make all symptoms flare or worse. Doing to much or too little can cause issues! I will save this discussion for my post for Myalgic Encephalitis awareness month!
COMMON TRIGGER POINTS OF PAIN INCLUDE; back of the head, tops of the shoulders, upper chest, hips, knees, outer elbows.
Fibromyalgia is often referred to as an invisible illness or the irritable everything syndrome. People with fibro may struggle to come to terms with the reality of their condition, feel that they are letting everyone down. It is important to have a good support network to talk about feelings and recognise emotion changes due to your physical symptoms.
Pain fluctuates & an increase in pain symptoms are called a flare up or ‘fibro flare’ various physical, environmental, emotional factors affect ‘flare up’ symptoms. Flare ups of pain can be incredibly frustrating & happen when you do too much or too little. We may be doing all the right things and suddenly the pain will increase! Fibromyalgia is about finding the right balance and sometimes household tasks can be exceptionally difficult!
BRAIN FOG IS REAL!!!
“Fibro fog” or “brain fog” – is a term some people use to describe cognitive issues associated with fibromyalgia.
- memory lapses
- difficulty concentrating
- trouble staying alert
I often find myself in a daze, not listening, concentrating or ‘day- dreaming’. Sometimes I can have long in-depth conversations with people and not remember what we spoke about, what, they said/ I said or why I said it. I find myself losing everything!!!! Reading things and not taking it in. watching things and not listening/ understanding. Forgetting simple things and being away with the fairies. As someone with OCD and who was once exceptionally organised, I find this to be the most difficult fibro symptom.
I hope through my ‘aticcersguidetolife’ accounts I can speak about my conditions in a positive way, network other young disabled people and raise awareness.
If you would like to find out more about fibromyalgia including flare ups, trigger points, fibro fog etc… I have done a more in-depth post here:
Fibromyalgia Action UK is an amazing charity that offers information and support to people with fibromyalgia and their families. There are many support networks for people with fibro including Facebook groups, smaller local groups funded through FAUK & social media. Don’t suffer alone. People with fibromyalgia can often feel isolated and struggle with mood disorders and mental health issues due to the uncertainty and grief of living with chronic pain.