In 2008, I began to notice my whole body hurt and I had a constant headache. Over the next 10 years, my symptoms continued to get worse with little to no answers from doctors.
Muscle and joint pain – best described as a very deep, burning, fiery pain
Muscle spasticity – tightness in hands, arms, chest, back, hamstrings and calves
Muscle fasciculations – hands, forearms, biceps, shoulders, back, quads and calves
Muscle cramps and spasms – occur immediately in response to exercise, exertion or quick movements
Muscle cramps, trembling, weakness and exhaustion for 24+ hours following physical exertion
Muscle spasms in my back and chest (feels like a bear hug) make breathing and swallowing difficult
Excruciating, debilitating sharp hip and lower leg pain
Weak and unsteady legs upon standing
Bottom of feet feel numb and tingly, will sometimes go completely numb
Legs, ankles and feet will be swollen when I wake up for no apparent reason
Skin on my neck and back feels like it is on fire or sunburned, like a hot iron is on it
Hands and feet turn white, blue, red or purple with temperature or emotional changes
Clothing often feels like it has needles in it that are sticking me
Skin abrasions or injuries take a long time to heal (weeks to heal and discolored for months)
Fluctuating body temperatures – I frequently feel flushed or like I’m on fire; face, head and ears turn cherry red; I’m usually hot but then sometimes it’s just the opposite and I will be freezing cold
Rigors – I can feel like I’m freezing cold, arms and hands shake uncontrollably
Constant sweating in spite of the temperature
Shortness of breath – climbing stairs, going for a walk, cutting the grass leave me exhausted and short of breath; walking any distance at all will cause leg pain and shortness of breath
Sleep apnea
No amount of sleep allows me to wake up feeling refreshed
I can fall asleep at any time: while driving, talking, typing or working at my desk
I live in a state of exhaustion, I have no energy
I describe my exhaustion like a light switch: I can be doing something and then suddenly feel like someone walked over and turned off the light switch
Burning, bloodshot eyes that are dry one minute and watering the next
Chronic headaches with pain behind my eyes that is too deep to touch
Ice pick headaches, feels like a knife being stabbed in my right temple/head/ear
Pain in my jaws and ears when chewing
Difficulty swallowing food; feels like it is sitting in my chest; throat muscles frequently cramp up