FIBROMYALGIA AWARENESS: PART ONE.

There was this idea by a support group I am a part of, Fibromyalgia Warriors Kenya (@fibrowarriorskenya on Instagram if you’d like to follow & learn more) to post something daily on my journey with Fibromyalgia. I have compiled mine into an article & also on my highlights (on Instagram @wendie.gikono) so I hope that reading through this, you’ll learn more about Fibromyalgia.

P.S. The responses here are mine & solely based on my experience with Fibromyalgia. Mine will definitely differ from someone else’s experience. #FibromyalgiaAwarenessMonth.

DAY 1: INTRODUCE YOURSELF.

Hello there! I am Wendy & I suffer from multiple conditions. I was first diagnosed with Fibromyalgia in 2011. This was after 5 years of unexplainable pain that was aside from the usual Lupus & Rheumatoid Arthritis pains. I shared something about my journey with Fibromyalgia every single day of May in the hope that you will learn, understand & become more empathetic to family, friends, colleagues or anyone that may be suffering from a chronic illness.

DAY 2: WHAT IS FIBROMYALGIA?

Fibromyalgia is a chronic, neurological condition that causes widespread pain, tenderness, stiffness, fatigue among other symptoms, throughout the body. The way your brain & spinal cord process painful & non-painful messages is altered by FM, which increases painful sensations. The brain produces inappropriate nerve impulses that result in the absence of proper signals as well as a variety of symptoms in the body.

The exact cause is unknown but it is thought to be triggered by illness, injury or an accident. However, this is not always the case. For me, it is a comorbid with all my other conditions meaning all these conditions are simultaneously present in my body. Fibromyalgia has been classified as a generalized pain syndrome but recent research suggests that it could in fact be an autoimmune disease.

DAY3: WHAT ARE THE TESTS YOU UNDERWENT TO DIAGNOSE FIBROMYALGIA?

There is no laboratory or diagnostic test for Fibromyalgia so it does not show up in your blood tests or on X-Rays/MRIs. A certain criteria has to be met for a Fibromyalgia diagnosis, either have severe pain in 3 to 6 different areas or mild pain in 7 or more areas & symptoms should have lasted 3 months or more. The extent of pain is assessed by applying gentle pressure on the “trigger points” where pain is likely to be worse (shown below) The 18 tender points for Fibromyalgia include lower neck in the front, edge of upper breast, arm near the elbow, knee, base of the skull in the back of the head, hip bone, Upper outer buttock, back of the neck & back of the shoulders. However, where one has another condition, it is relatively easier to diagnose Fibromyalgia as they tend to overlap especially in Autoimmune Disease patients.

DAY 4: HOW LONG DID IT TAKE TO GET A DIAGNOSIS?

I was being treated for Juvenile Rheumatoid Arthritis from age 13 (’07), and then I got the lupus diagnosis when I was 16 (’09). Fibromyalgia was diagnosed when I was 18 (’11). It was relatively straightforward for me because the pains I had were very different from the “usual” lupus & Arthritis pains. So the Fibromyalgia diagnosis in & of itself took 5 years.

EXTRA DAY QS: DO YOU HAVE ANY OTHER CONDITIONS? IF SO, MENTION THEM.

Yes, I do have other chronic, autoimmune conditions:

Systemic Lupus Erythematosus (SLE)
Antiphospholipid Antibody Syndrome (APS)
Polymyositis (PM)
Stiff Person Syndrome (SPS)
Rheumatoid Arthritis (RA)
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Mixed Connective Tissue Disease (MCTD)
Spinal Demyelinating Myelopathy
Myalgic Encephalomyelitis (ME) aka Chronic Fatigue Syndrome (CFS)

I also suffer from Asthma, Depression, Osteoarthritis, Osteoporosis, Mechanical Back Nerve Pain, Sciatica, Left Temporal Focal Seizure disorder, Hemiplegic Migraines, Peripheral Neuropathy, Chronic Pain, Raynaud’s phenomenon and Retinal Vasculitis.

DAY 5: WHAT ARE YOUR WORST SYMPTOMS?

Widespread pain: Every muscle, my back, joints & neck.
Debilitating Chronic Fatigue: All day, every day.
Muscular tenderness, soreness & muscle spasms.
Fibro fog i.e. Memory lapses, forgetfulness & difficulty concentrating.
Insomnia & non-restorative sleep i.e. Sleeping for long periods but never feeling rested.
Depression, mood swings & anxiety.
Stiff-person syndrome i.e. Extreme muscle stiffness & painful spasms that impair mobility.
Sciatica i.e. pain along the sciatic nerve that’s from the lower back to the legs.
Migraines.
Allodynia: is the experience of pain from stimuli that isn’t normally painful. E.g. Clothes’ fabric, washing my face, laying my head on a pillow, tying my hair etc.
Tingly feet & sensation to cold.
Sensory overload i.e. Over-stimulation of the body’s senses causing extreme irritability, discomfort or restlessness.
Costochondritis i.e. Pain around the ribs made worse by deep breaths or coughing.
Peripheral Neuropathy i.e. nerve damage especially on the left side of my body.
Irritable Bowel Syndrome (IBS) i.e. a disorder that affects the large intestine causing cramping, abdominal pain, bloating, gas, and diarrhea or constipation, or both.
Difficulty with balance, walking, standing, sitting & lying down.
Body temperature instability causing hot flashes, profuse sweating, numbness etc.

DAY 6: WHAT SYMPTOM IS THE MOST CONSISTENT?

Widespread & constant pain especially my torso, back & leg muscles.
Fatigue: Some days so debilitating I cannot get out of bed.
Muscle tenderness, soreness & uncontrollable spasms.
Peripheral neuropathy: Extreme nerve pain especially on the left side of my body.
Fibro fog: I forget words mid-sentence, forget people’s names, difficulty concentrating & my short-term memory is getting worse & worse.
Loss of balance especially when walking.
Morning stiffness every single day.
Insomnia: lack of good quality sleep.

DAY 7: WHAT DOES FATIGUE FEEL LIKE?

Fatigue is this heavy tiredness that is worsened by physical or mental activity but does not improve with rest. It makes me so low on energy, I sleep, but I wake up feeling unrefreshed. It stays with me all day long. I feel physically, mentally & emotionally exhausted. I have days of moderate fatigue where I can go through the day & still be productive. I also have days of severe fatigue when I can not do anything. I was also diagnosed with Chronic Fatigue Syndrome (Myalgic encephalomyelitis), which makes things all the more difficult. It causes difficulties concentrating, loss of memory, chronic insomnia, muscle weakness & soreness, chronic headaches, moodiness, dizziness especially when going from a sitting/lying position to standing up, slowed responses & reflexes and impaired decision-making & judgments, depression plus many other physical symptoms. Fatigue & tiredness are NOT the same thing.

DAY 8: HOW DOES FATIGUE AFFECT YOUR DAILY LIFE?

My first sense of fatigue is when I wake up & just feel not really rested. If I follow that up with a shower, I need about 30 minutes to recover. Fatigue makes any activity tiresome: walking, sitting, standing, any & and everything. I have to nap about twice in the middle of the day if I am to be at all productive. These are on the days of moderate fatigue. When Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) is involved, forget about anything else! It hits me like a train & everything stops & I have to go home till it passes. My longest spell has been 13 days, during which I could not do anything for myself. Even holding a cup was impossible. So fatigue is not the same thing as being tired. It’s a whole other beast!

DAY 9: WHAT DOES BRAIN FOG FEEL LIKE?

Brain fog is literally just that: the brain becomes foggy & I can not think clearly. My memory escapes me, poor concentration & I can not bring things into focus. It’s the small things like losing my train of thought mid-sentence or being in the middle of town, and suddenly, I can not remember where I was going or where I am. It’s working & suddenly mot remembering what you were doing. It’s having numerous sticky notes around the house & constant alarms to remind me to do something that’s like second nature, eg taking medication. Your brain just lets you down whenever it feels like leaving you completely helpless. It’s a very difficult thing to manage as it happens anytime, and honestly, brain fog sucks the life out of you! And that sucks!

DAY 10: HOW DOES BRAIN FOG AFFECT YOUR DAILY LIFE?

My goodness! Brain fog made me blank out completely on History paper 2, Chem paper 2 & CRE paper 1, I forgot mathematical formulas, I’ve left exam rooms during my CPAs & degree exams because I could not remember anything. There is the completely blanking out brain fog & the one that comes & goes. I work a lot with sticky notes, notes on my phone, reminders & alarms. I also rely on my dad a lot to remind me to do things. So say I’m having errands, I have to write it all down step by step so that I don’t forget anything. I get lost in town all the time & have to call my dad for directions, I can’t even have a password to lock/unlock my phone because I’ll forget it. So, on a daily basis, I really write a lot of things down, especially for work purposes, I have a notebook that details step by step operations. Brain fog really, really sucks!

DAY 11: WHAT ARE THE MYTHS ABOUT INSOMNIA?

Insomnia is solely not being able to sleep.
Insomnia is all in your head.
If you cannot wake up without an alarm clock, you aren’t getting enough sleep.
Napping helps offset insomnia.
Watching TV helps with insomnia.
Alcohol can cure insomnia.
Insomnia is difficult to treat.
If you cannot sleep for eight hours, you have insomnia.
Insomnia is only temporary.
You couldn’t fall asleep right away last night so you must have insomnia.
All insomnias are alike.
Lying awake in bed is the symptom that proves you have insomnia.
Insomnia is not a medical condition that warrants treatment.

DAY 13: WHAT IS SLEEP HYGIENE?

Strong sleep hygiene means having both a bedroom environment and daily routines that promote consistent, uninterrupted sleep. Keeping a stable sleep schedule, making your bedroom comfortable and free of disruptions, following a relaxing pre-bed routine, and building healthy habits during the day can all contribute to ideal sleep hygiene. Obtaining healthy sleep is important for both physical and mental health, improving productivity and overall quality of life.

Poor sleep hygiene means having a hard time falling asleep, experiencing frequent sleep disturbances, suffering daytime sleepiness, and an overall lack of consistency in sleep quantity or quality.

In relation to fibromyalgia, I have poor sleep hygiene. I try as much as I can to create strong sleep hygiene but I suffer from insomnia and painsomnia (the inability to sleep due to pain) & debilitating fatigue so, for me, I listen to my body and do as it commands. That’s fibromyalgia for you.

DAY 14: HOW HAS FIBROMYALGIA AFFECTED YOUR MENTAL HEALTH?

Fibromyalgia, together with my other conditions, have led to me suffering from Depression. I also have some anxiety when it comes to certain things. I traced my depression back to 2009 when I was in form 3. At the moment, I didn’t think much of it, but that’s when I gave up on things such as going for Rangers’ club meetings. This was the one thing I really loved in high school, but I gave up on it because I just couldn’t do it. Now I know why. I slip in and out of it, though. I have periods when it’s really bad & I’m learning to live with it. Thinking about going for therapy to get a better handle on it but so far, I have a therapist in my dad & he can tell when I’m in a depressive funk & works to get me out of it. So I balance all the physical & mental challenges the best I can.

DAY 15: HOW DO YOU COPE WITH THE EMOTIONAL & MENTAL HEALTH CHALLENGES THAT COME WITH FIBROMYALGIA?

I pray the rosary every day.
Doing puzzles honestly takes my mind off everything.
I’ve started on affirmations.
I watch a lot of movies/series.
I read a lot of fiction & medical journals esp. into the conditions I have.
I’ve got 2 left feet but I find myself dancing more & more and it brings me so much joy!
I talk esp. to my dad about my hopes, dreams & fears (depending on the day) and he grounds me & reassures me.
I call my friends either to pray over me, listen to me rant, or have a good old laugh!
I exercise as much as possible & that has really really made me happy in recent times.

Here is a link to part 2: https://mctdwarrior.wordpress.com/2021/05/31/fibromyalgia-awareness-part-two/

I hope that you have learned a little more about fibromyalgia. Kindly share this with a friend or family member, and let’s keep the awareness train going! Let’s learn, educate, and empower. Thank you, and till the next post, warmth, love, and light.