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!

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.

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.

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

31. Chest pain
32. Diffuse swelling
33. “Growing” pains that don’t go away once you are done growing
34. Headache
35. Inflamed Rib Cartilage
36. Joint pain
37. Lumpy, tender breasts
38. Morning stiffness
39. Muscle pain
40. Muscle spasms 41. Muscle twitching
41. Muscle weakness
42. Pain that ranges from moderate to severe
43. Pain that moves around the body
44. Paralysis or severe weakness of an arm or leg
45. Restless Leg Syndrome
46. Rib Pain
47. Scalp Pain (like hair being pulled out)
48. Tender points or trigger points
49. TMJ syndrome
50. “Voodoo Doll” Poking Sensation in random places

NEUROLOGICAL

52. Blackouts
53. Brain fog
54. Feeling spaced out
55. Inability to think clearly
56. Lightheadedness;
57. Noise intolerance
58. Numbness or tingling sensations
59. Photophobia (sensitivity to light)
60. Seizures
61. Seizure-like episodes
62. Sensation that you might faint 63. Syncope (fainting)
63. Tinnitus (ringing in one or both ears) 65. Vertigo or dizziness
    EQUILIBRIUM/PERCEPTION
64. Bumping into things
65. Clumsy Walking
66. Difficulty balancing
67. Difficulty judging distances (when driving, etc.)
68. Directional disorientation 71. Dropping things frequently
69. Feeling spatially disoriented
70. Frequent tripping or stumbling
71. Not seeing what you’re looking at
72. Poor balance and coordination
73. Staggering gait

SLEEP

77. Alertness/energy best late at night
78. Altered sleep/wake schedule
79. Awakening frequently
80. Difficulty falling asleep
81. Difficulty staying asleep
82. Excessive sleeping
83. Extreme alertness or energy levels late at night
84. Falling asleep at random and sometimes dangerous moments
85. Fatigue
86. Light or broken sleep pattern
87. Muscle spasms/twitches at night
88. Narcolepsy
89. Sleep disturbances
90. Sleep starts or falling sensations
91. Teeth grinding
92. Tossing and turning 93. Un-refreshing or non-restorative sleep
93. Vivid or disturbing dreams/nightmares

EYES/VISION

95. Blind spots in vision
96. Eye pain 97. Difficulty switching focus from one thing to another
97. Frequent changes in ability to see well
98. Night driving difficulty
99. Occasional Blurry vision
100. Poor night vision
101. Rapidly worsening vision
102. Vision changes

COGNITIVE

104. Becoming lost in familiar locations when driving
105. Confusion 106. Difficulty expressing ideas in words
106. Difficulty following conversation (especially if background noise present)
107. Difficulty following directions while driving
108. Difficulty following oral instructions
109. Difficulty following written instructions
110. Difficulty making decisions
111. Difficulty moving your mouth to speak
112. Difficulty paying attention
113. Difficulty putting ideas together to form a complete picture
114. Difficulty putting tasks or things in proper sequence
115. Difficulty recognizing faces
116. Difficulty speaking known words
117. Difficulty remembering names of objects
118. Difficulty remembering names of people
119. Difficulty understanding what you read
120. Difficulty with long-term memory
121. Difficulty with simple calculations
122. Difficulty with short-term memory
123. Easily distracted during a task
124. Feeling too disoriented to drive
125. Forgetting how to do routine things
126. Impaired ability to concentrate
127. Inability to recognize familiar surroundings
128. Losing track in the middle of a task (remembering what to do next)
129. Losing your train of thought in the middle of a sentence
130. Loss of ability to distinguish some colors
131. Poor judgment
132. Short term memory impairment
133. Slowed speech
134. Staring into space trying to think
135. Stuttering; stammering
136. Switching left and right
137. Transposition (reversal) of numbers, words and/or letters when you speak
138. Transposition (reversal) of numbers, words and/or letters when you write
139. Trouble concentrating
140. Using the wrong word
141. Word-finding difficulty

EMOTIONAL

143. Abrupt and/or unpredictable mood swings
144. Anger outbursts
145. Anxiety or fear when there is no obvious cause
146. Attacks of uncontrollable rage
147. Decreased appetite
148. Depressed mood
149. Feeling helpless and/or hopeless
150. Feeling worthless
151. Frequent crying
152. Inability to enjoy previously enjoyed activities
153. Irrational fears
154. Irritability
155. Overreaction
156. Panic attacks
157. Personality changes
158. Phobias
159. Suicide attempts
160. Suicidal thoughts
161. Tendency to cry easily

GASTROINTESTINAL

162. Abdominal cramps
163. Bloating
164. Decreased appetite
165. Food cravings
166. Frequent constipation
167. Frequent diarrhea
168. Heartburn
169. Increased appetite
170. Intestinal gas
171. Irritable bladder
172. Irritable bowel syndrome
173. Nausea
174. Stomachache 175. Vomiting
175. Weight gain 177. Weight loss

UROGENITAL

178. Decreased libido (sex drive)
179. Endometriosis 180. Frequent urination
180. Impotence
181. Menstrual problems 183. Painful urination or bladder pain
182. Pelvic pain 185. Prostate pain
183. Urinary frequency 187. Worsening of premenstrual syndrome (PMS)

SENSITIVITIES

188. Alcohol intolerance
189. Allodynia (hypersensitive to touch)
190. Alteration of taste, smell, and/or hearing 191. Odor sensitivity
191. Sensitivity to chemicals in cleaning products, perfumes, etc. 193. Sensitivities to foods
192. Sensitivity to light
193. Sensitivity to mold
194. Sensitivity to noise
195. Sensitivity to odors
196. Sensitivity to yeast (getting yeast infections frequently on skin, etc.)
197. Sensory overload
198. Sensitivity to pressure changes, temperature & humidity
199. Vulvodynia

SKIN

202. Able to “write” on skin with finger
203. Bruising easily
204. Bumps and lumps 205. Eczema or psoriasis
205. Hot/dry skin
206. Ingrown hairs
207. Itchy/Irritable skin
208. Mottled skin
209. Rashes or sores
210. Scarring easily
211. Sensitivity to the sun
212. Skin suddenly turns bright red

CARDIOVASCULAR (Heart)

214. “Click-murmur” sounds through stethoscope
215. Fluttery heartbeat
216. Irregular heartbeat
217. Pain that mimics heart attack
218. Rapid heartbeat

HAIR/NAILS

219. Dull, listless hair
220. Heavy and splitting cuticles
221. Irritated nail beds
222. Nails that curve under
223. Pronounced nail ridges
224. Temporary hair loss

OTHER

225. Canker sores
226. Dental problems
227. Disk Degeneration
228. Hemorrhoids
229. Nose bleeds
230. Periodontal (gum) disease

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