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Fibromyalgia Awareness during COVID19

I am sharing this piece in honour of May, Fibromyalgia month. May 12th is Fibromyalgia Awareness Day. This is a victory for those of us who have been diagnosed with this illness, which has gone through many medical iterations before finally and most recently being considered an illness of the central nervous system. Which makes a great deal of sense to me as a patient for over two decades!

Fibromyalgia/No Pain Like This Body, Kaushalya Bannerji, May 2020

In the times of the new coronavirus, COVID19, it would do us well to pay attention to the struggle and suffering of people who also have illnesses of undetermined nature that catastrophically affect their quality of life, including their abilities to earn, learn, work, and parent, as the issues of the virus we face now are showing us widely.

Sufferers of Fibromyalgia, Myalgic Encephalitis, and chronic Lyme, are the least understood, properly treated, and most maligned patients of chronic illness, precisely because experts have not been able to agree on the criteria for clinical diagnosis and the existence of chronic Lyme is seen to be a hoax by many medical types, simply because they do not understand it. In this way,the experiences associated with certain types of illness are more akin to be disparaged, controversial, patient-blaming and uncertain.

Fibromyalgia, It’s All in Your Head, Kaushalya Bannerji, May 2020

I have experienced musculo-skeletal approaches, pyschological (it’s all in your head/hysteria—mainly from female therapists!), been advised to drop out of university and become unemployed, by other professional women and been refused services employing touch at a fibromyalgia clinic by a racist physiotherapist who massaged all the white women in the rehab group. That was the last time I have gone to any group rehab referral. I have included the words of another Fibromyalgia patient, Emily, from her website at the end of this piece. If you read it, you will see it’s a tremendous amount of stress to be left to navigate on one’s own.

COVID19 needs to be well understood and we will see numerous causative explanations, attempts at treatment, and medical interventions. We will need to understand mutation, immunity, re-infection and long term impacts on the central nervous system if cytokine storms are indeed the response to severe or fatal infection. That’s a lot of new research! That’s probably because approximately half of COVID19 patients are men. This makes it unlike ME and Fibromyalgia which are seen as overwhelmingly female cohorts. And like Lyme disease which is also experienced by the population as a whole, the master narrative of COVID19, is most likely going to be one which utterly disregards the lived experience of patients and leaves people’s lives, finances, and self-esteem in tatters.

Fibromyalgia/ What it is not, Kaushalya Bannerji, May 2020

None of the descriptors or symptoms are meant to stand in for professional medical advice. They are merely descriptions of symptoms experienced by fibro patients and have been collected together. I also include some my own poetry and art on living with chronic illness.

THE APPOINTMENT

is late. 40 minutes of shuffling and squirming
while fatigue and lassitude course through my inflamed
veins

then hailed, oh great goddess of the white robe,
i come to make my obeisance. I offer you
whole realms of symptoms, libations of bloodwork,
i clean your floor with my tears

Yawning, you glance away, anything
but that imagined malady, the hypochondriac
sitting in your office, marring your chandeliered
wellness center.

centering into the distance, at the cuboard away
from the patient’s head, you begin to plan the day,
your kids, your chores, your pills. You think there is no help.
You say so, with your body, your unmet eyes,
your screen like shield that distances from that voice
that pleads for understanding and help.

Nothing is real. Not the non-diagnosis, not the diagnosis that is a non-diagnosis.
not the deep scarlet of your secrets spurting into the purple, green, yellow, blue.
pollock’s abstractions contained and solid in the not-real.

I come armed with lover/witness, research, anecdotes, reports, book titles.

No one is interested.
I return broken into smaller pieces. Who will know the name of what i have become?Kaushalya Bannerji, 2018

PREFACE by Emily from http://www.InspiredlivingwithFibromyalgia.com

Fibromyalgia is a syndrome with many symptoms. Each individual with Fibromyalgia will have some of the symptoms. A few people will have all of the symptoms, but not everyone with Fibro has the same symptoms or even has symptoms all of the time. Also, symptoms may vary from day to day, year to year, or even minute to minute for each person coping with Fibromyalgia and other common coexisting conditions as well.
How confusing is that? Well, it gets even more confusing! Fibromyalgia patients have reported more than 200 symptoms that I have been collecting in a list for quite some time.
Additionally, these symptoms are not meant to diagnose! My purpose in compiling them is to help people be more aware of what people with Fibromyalgia may be dealing with at any given moment and to help people with Fibro track symptoms, so that you have as much information as possible for your doctor to help you.

The list below is from http://www.InspiredlivingwithFibromyalgia.com

Informational Purposes Only – the content offered in this list is for informational and educational purposes only. This list of symptoms is not intended to be a substitute for medical advice, diagnosis or treatment. Please contact your doctor or professional healthcare provider for assistance with medical advice, treatment, and diagnosis.

GENERAL

  1. Activity level decreased to less than 50% of pre-illness activity level
  2. Cold hands and feet (extremities)
  3. Cough
  4. Craving carbohydrates
  5. Delayed reaction to physical activity or stressful events
  6. Dryness of eyes and/or mouth
  7. Family member(s) with Fibromyalgia
  8. Fatigue, made worse by physical exertion or stress
  9. Feeling cold often
  10. Feeling hot often
  11. Frequent sighing
  12. Heart palpitations
  13. Hoarseness
  14. Increased thirst
  15. Low blood pressure (below 110/70)
  16. Low body temperature (below 97.6)
  17. Low-grade fevers
  18. Night sweats
  19. Poor circulation in hands/feet
  20. Recurrent flu-like illness
  21. Shortness of breath with little or no exertion
  22. Severe nasal allergies (new or worsening allergies)
  23. 2Sore throat
  24. Sweats
    25.Symptoms worsened by air travel
    26.Symptoms worsened by stress27.Symptoms worsened by temperature changes
    28.Tender or swollen lymph nodes, especially in neck and underarms
    29.Tremor or trembling
    30.Unexplained weight gain or loss

PAIN

  1. Chest pain
  2. Diffuse swelling
  3. “Growing” pains that don’t go away once you are done growing
  4. Headache
  5. Inflamed Rib Cartilage
  6. Joint pain
  7. Lumpy, tender breasts
  8. Morning stiffness
  9. Muscle pain
  10. Muscle spasms 41. Muscle twitching
  11. Muscle weakness
  12. Pain that ranges from moderate to severe
  13. Pain that moves around the body
  14. Paralysis or severe weakness of an arm or leg
  15. Restless Leg Syndrome
  16. Rib Pain
  17. Scalp Pain (like hair being pulled out)
  18. Tender points or trigger points
  19. TMJ syndrome
  20. “Voodoo Doll” Poking Sensation in random places

NEUROLOGICAL

  1. Blackouts
  2. Brain fog
  3. Feeling spaced out
  4. Inability to think clearly
  5. Lightheadedness;
  6. Noise intolerance
  7. Numbness or tingling sensations
  8. Photophobia (sensitivity to light)
  9. Seizures
  10. Seizure-like episodes
  11. Sensation that you might faint 63. Syncope (fainting)
  12. Tinnitus (ringing in one or both ears) 65. Vertigo or dizziness
    EQUILIBRIUM/PERCEPTION
  13. Bumping into things
  14. Clumsy Walking
  15. Difficulty balancing
  16. Difficulty judging distances (when driving, etc.)
  17. Directional disorientation 71. Dropping things frequently
  18. Feeling spatially disoriented
  19. Frequent tripping or stumbling
  20. Not seeing what you’re looking at
  21. Poor balance and coordination
  22. Staggering gait

SLEEP

  1. Alertness/energy best late at night
  2. Altered sleep/wake schedule
  3. Awakening frequently
  4. Difficulty falling asleep
  5. Difficulty staying asleep
  6. Excessive sleeping
  7. Extreme alertness or energy levels late at night
  8. Falling asleep at random and sometimes dangerous moments
  9. Fatigue
  10. Light or broken sleep pattern
  11. Muscle spasms/twitches at night
  12. Narcolepsy
  13. Sleep disturbances
  14. Sleep starts or falling sensations
  15. Teeth grinding
  16. Tossing and turning 93. Un-refreshing or non-restorative sleep
  17. Vivid or disturbing dreams/nightmares

EYES/VISION

  1. Blind spots in vision
  2. Eye pain 97. Difficulty switching focus from one thing to another
  3. Frequent changes in ability to see well
  4. Night driving difficulty
  5. Occasional Blurry vision
  6. Poor night vision
  7. Rapidly worsening vision
  8. Vision changes

COGNITIVE

  1. Becoming lost in familiar locations when driving
  2. Confusion 106. Difficulty expressing ideas in words
  3. Difficulty following conversation (especially if background noise present)
  4. Difficulty following directions while driving
  5. Difficulty following oral instructions
  6. Difficulty following written instructions
  7. Difficulty making decisions
  8. Difficulty moving your mouth to speak
  9. Difficulty paying attention
  10. Difficulty putting ideas together to form a complete picture
  11. Difficulty putting tasks or things in proper sequence
  12. Difficulty recognizing faces
  13. Difficulty speaking known words
  14. Difficulty remembering names of objects
  15. Difficulty remembering names of people
  16. Difficulty understanding what you read
  17. Difficulty with long-term memory
  18. Difficulty with simple calculations
  19. Difficulty with short-term memory
  20. Easily distracted during a task
  21. Feeling too disoriented to drive
  22. Forgetting how to do routine things
  23. Impaired ability to concentrate
  24. Inability to recognize familiar surroundings
  25. Losing track in the middle of a task (remembering what to do next)
  26. Losing your train of thought in the middle of a sentence
  27. Loss of ability to distinguish some colors
  28. Poor judgment
  29. Short term memory impairment
  30. Slowed speech
  31. Staring into space trying to think
  32. Stuttering; stammering
  33. Switching left and right
  34. Transposition (reversal) of numbers, words and/or letters when you speak
  35. Transposition (reversal) of numbers, words and/or letters when you write
  36. Trouble concentrating
  37. Using the wrong word
  38. Word-finding difficulty

EMOTIONAL

  1. Abrupt and/or unpredictable mood swings
  2. Anger outbursts
  3. Anxiety or fear when there is no obvious cause
  4. Attacks of uncontrollable rage
  5. Decreased appetite
  6. Depressed mood
  7. Feeling helpless and/or hopeless
  8. Feeling worthless
  9. Frequent crying
  10. Inability to enjoy previously enjoyed activities
  11. Irrational fears
  12. Irritability
  13. Overreaction
  14. Panic attacks
  15. Personality changes
  16. Phobias
  17. Suicide attempts
  18. Suicidal thoughts
  19. Tendency to cry easily

GASTROINTESTINAL

  1. Abdominal cramps
  2. Bloating
  3. Decreased appetite
  4. Food cravings
  5. Frequent constipation
  6. Frequent diarrhea
  7. Heartburn
  8. Increased appetite
  9. Intestinal gas
  10. Irritable bladder
  11. Irritable bowel syndrome
  12. Nausea
  13. Stomachache 175. Vomiting
  14. Weight gain 177. Weight loss

UROGENITAL

  1. Decreased libido (sex drive)
  2. Endometriosis 180. Frequent urination
  3. Impotence
  4. Menstrual problems 183. Painful urination or bladder pain
  5. Pelvic pain 185. Prostate pain
  6. Urinary frequency 187. Worsening of premenstrual syndrome (PMS)

SENSITIVITIES

  1. Alcohol intolerance
  2. Allodynia (hypersensitive to touch)
  3. Alteration of taste, smell, and/or hearing 191. Odor sensitivity
  4. Sensitivity to chemicals in cleaning products, perfumes, etc. 193. Sensitivities to foods
  5. Sensitivity to light
  6. Sensitivity to mold
  7. Sensitivity to noise
  8. Sensitivity to odors
  9. Sensitivity to yeast (getting yeast infections frequently on skin, etc.)
  10. Sensory overload
  11. Sensitivity to pressure changes, temperature & humidity
  12. Vulvodynia

SKIN

  1. Able to “write” on skin with finger
  2. Bruising easily
  3. Bumps and lumps 205. Eczema or psoriasis
  4. Hot/dry skin
  5. Ingrown hairs
  6. Itchy/Irritable skin
  7. Mottled skin
  8. Rashes or sores
  9. Scarring easily
  10. Sensitivity to the sun
  11. Skin suddenly turns bright red

CARDIOVASCULAR (Heart)

  1. “Click-murmur” sounds through stethoscope
  2. Fluttery heartbeat
  3. Irregular heartbeat
  4. Pain that mimics heart attack
  5. Rapid heartbeat

HAIR/NAILS

  1. Dull, listless hair
  2. Heavy and splitting cuticles
  3. Irritated nail beds
  4. Nails that curve under
  5. Pronounced nail ridges
  6. Temporary hair loss

OTHER

  1. Canker sores
  2. Dental problems
  3. Disk Degeneration
  4. Hemorrhoids
  5. Nose bleeds
  6. Periodontal (gum) disease

https://www.cp24.com/news/canadian-paediatric-society-eyes-mysterious-syndrome-for-suspected-covid-links-1.4928019

2 thoughts on “Fibromyalgia Awareness during COVID19

  1. Thanks for this piece!! It really does speak to the experiences of undetermined health in indeterminate times.

    Like

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