‘Physical pain that does not get better and makes me sick all over.’

‘Fibro’ refers to fibrous tissue – ligaments and tendons; ‘myo’ refers to muscle, and ‘algia’ refers to pain. FM is a chronic disorder, which features widespread musculoskeletal pain in the muscles, ligaments and tendons. A syndrome is a set of signs/symptoms that are seen together.

In Ontario, FM used to be the responsibility of rheumatologists. Recently, rheumatologists have expressed a desire to be absolved of this responsibility because FM is not a rheumatological disease. This renders it an ‘orphan’ illness like ES/MCS and ME/CFS.

FROM THE COMMUNITY CONSULTATION

FM can be excruciating and disabling 

At home, I literally have to crawl up the stairs to get to the washroom. This all depends on the pain. … I don’t even have a bedroom, I am sleeping in the living room. … Any stress makes the fibro worse, any kind of normal daily stress makes the pain worse, makes you really scatter-brained, really forgetful, can’t remember. … You don’t get better, you just learn to deal with it, you take medications and do therapy, and you are always trying to move. I ride a bike sometimes, but sometimes it hurts too much to put a leg over the bar to get on. If I’m able to, we walk. If I am too sore we take the bus. I don’t drive. My two adult daughters live with me, thank God, I would be in trouble otherwise, one helps with money, other helps around the house with the chores I can’t do anymore. I loved volunteering at school, but I can’t hold a pen long now, and if I do too much cutting my hands hurt. I used to be very organized, now I get mixed up. … I used to be able to five things at once, now I am lucky if I can do one and a half. (laughs ) Guaranteed I forget everything, I have notes everywhere, I have a tack board, I have magnets all over fridge, and I am really forgetful. It is really ridiculous. … Pearl FM

                                                                                                                

SYMPTOMS

Symptoms occur on a gradient from mild to severe pain, and can affect many parts of the body.

FROM THE COMMUNITY CONSULTATION

“There are times when my illness is really bad, that I can’t even make a meal. If it weren’t for my husband, I would not eat. I wouldn’t be able to eat.” Sharon ME FM

Neurological Manifestations are often present, such as hypertonic and hypotonic muscles; musculoskeletal asymmetry and dysfunction involving muscles, ligaments and joints; atypical patterns of numbness and tingling; abnormal muscle twitch response, muscle cramps, muscle weakness and fasciculations and stiffness. It is common for generalized or regional stiffness that is most severe upon awakening and typically lasts for hours, to occur. Stiffness can return during periods of inactivity during the day. Headaches; generalized weakness, perceptual disturbances, spatial instability, and sensory overload phenomena.

Neurocognitive Manifestations are also common: impaired concentration and short-term memory consolidation; impaired speed of performance; inability to multi-task, and/or cognitive overload.

Other Manifestations include: persistent and reactive fatigue accompanied by reduced physical and mental stamina which often interferes with the patient’s ability to exercise; unrefreshing sleep accompanied by sleep disturbances including insomnia, frequent nocturnal awakening, nocturnal myoclonus, and/or restless leg syndrome.

Autonomic and/or Neuroendocrine Manifestations may include: cardiac arrhythmias, hypotension; vertigo; vasomotor instability; temperature instability and heat/cold intolerance; respiratory disturbances; intestinal and bladder dysfunctions; dysmenorrhea; loss of adaptability and tolerance for stress, emotional flattening, lability, and/or reactive depression.

FROM THE COMMUNITY CONSULTATION

I think I’ve had it since a teenager. I have always had muscular problems but it was not diagnosed properly. I got sick with the flu and I couldn’t walk. I went to see the family doctor who sent me to the rheumatologist and diagnosed me with FM. I got sicker and sicker and symptoms popping up. I could walk, but I couldn’t carry stuff — I couldn’t walk very far, only to the park across the street. When winter came and it got cold, I also have nerve pain whenever I get cold or even a fan, my muscles would freeze up. I can tell when my FM is acting up — when it is raining outside my neck gets really stiff and I can’ t move because my shoulders get as hard as rock and that is how I know the FM is acting up, not the others. TJ FM ME/CFS ES/MCS

 
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