Here is a general overview of the main symptoms I’ve experienced throughout this crazy journey of mine.

Don’t judge me for my categorization.  When you experience dozens at a time and so many are in constant flux, there is no easy way to do it.

All the Lovely Symptoms I’ve Experienced: 

Constant Symptoms that Have Never Gone Away in Over 9 Years (not exaggerating) 

  • Debilitating chronic pain (mostly muscular in my back, neck, shoulders and hips, but is migratory and worsens with activity and positioning – sitting for more than 10 minutes exacerbates it)
  • Extreme unrelenting fatigue
  • Insomnia (wired but tired) for multiple hours every night, sometimes all night
  • Non-restful sleep and inability to move/function in the morning after waking

Frequent Symptoms (daily or nearly daily, varies in duration and intensity) 

  • Muscle weakness
  • Dizziness, Lightheadedness
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Low blood pressure and Postural Orthostatic Hypotension
  • Vasovagal syncope and near fainting episodes
  • Chronic nausea
  • Loss of Appetite
  • Unavoidable need to lay down after short tasks
  • Brain fog and cognitive slowness
  • Difficulty finding words
  • Neck pain and stiffness
  • Extreme exaggerated motion sickness/vestibular sensitivities
  • Incredible sickness and weakness from showering/near passing out
  • Neuropathy – Numbness, burning, tingling, pinprick sensations

Moderately Frequent Symptoms (on again, off again, vary in intensity)

  • Flu-like feelings and symptoms
  • Fevers (feeling like being boiled alive)
  • Bone pain
  • Pain in the facial bones and around eyes
  • TMJ pain
  • Ice pick headaches
  • Regular Headaches
  • Involuntary Tremors (uncontrolled shaking when not cold)
  • Liver and other organ pain
  • Sharp pain in the soles of my feet
  • Low Blood sugar
  • Low body temperature (96s and 97s)
  • Temperature dysregulation – flushing and chills
  • Feeling intensely hungover on a regular basis (with zero alcohol involved)
  • Losing vision and hearing if I arch my back too much (someone please tell me what the hell that is?!)
  • Visual disturbances – floaters and blurred vision
  • Increased pain and flares with the full moon (like clockwork, its a real thing, I promise I’m not making it up)
  • Sensitive to rain and storms/barometric pressure
  • Exaggerated hangover from sugar or a teeny bit of alcohol
  • Multiple chemical sensitivities (intolerance to fragrances and chemicals)
  • Mold sensitivity
  • Exaggerated startle response (to loud noises or being surprised – body will be on high alert for 30min-hours after the fact)
  • Hypersensitive to environmental stimuli and easily overstimulated – especially loud noises and smells
  • Weight gain and loss
  • Muscle loss and atrophy
  • Exercise intolerance (bedridden/complete crash after slightest exercise)
  • Bloating and GI pain
  • Depression
  • Social anxiety (due to circumstances and cognitive difficulties)
  • Sensory hyperarousal and overwhelm
  • Spontaneous crying

Random Symptoms (less frequent, but still scary as hell) 

  • Temporary muscle paralysis
  • Spontaneous hearing loss
  • Spontaneous vision loss
  • Sensation of thousands of bugs crawling right underneath my skin
  • Difficulty speaking
  • Confusion and disorientation
  • Inability to follow a train of thought or a conversation
  • Forgetting how to perform simple, habitual tasks 
  • Being jolted awake shortly after falling asleep with heart palpitations and an adrenaline rush (ready to run a marathon but also simultaneously exhausted) for no reason
  • Hypnagogic Hallucinations – continuation of a dream, even after being fully awake
  • Air hunger – inability to take a full breath or feel like your getting enough oxygen
  • Depersonalization – feeling like a passive, detached observer of oneself, thoughts and feelings seem unreal or not to belong to oneself, loss of all sense of identity
  • Derealization – a feeling that ones surroundings are not real
  • Irritability and Lyme rage (real thing, look it up)
  • Nightmares
  • Suicidal thoughts

Greatly Improved/Old Symptoms That Got Better with Treatment

  • Chest pain
  • Heart Palpitations
  • Insanely high heart rate (200 bpm laying down)
  • Neurocardiogenic syncope episodes (fainting)
  • Hot flashes/Night sweats
  • Muscle spasms
  • Hypersomnia (regularly sleeping 18+ hours)
  • Overwhelming need to always nap
  • Severe herx reactions and extreme flares with menstrual cycle
  • Ataxia – Loss of balance and gross motor coordination
  • Double vision
  • Light/sun sensitivity (immediately tearing up with bright light)
  • Sound sensitivity
  • Tinnitus – ringing in ears
  • Severe hair loss
  • Facial twitching
  • Slight Bell’s palsy
  • Repeated skin rashes/ringworm looking candida rashes
  • Unquenchable thirst
  • Difficulty swallowing
  • Chronic sore throat
  • Swollen glands
  • Needing to constantly clear throat, phlegm-y (sorry… so gross)
  • Recurrent infections and illnesses (Chronic UTIs, sinus infections, respiratory infections, strep, flus and colds)

Whew! You made it!

And people say Chronic Lyme doesn’t exist…