Symptoms

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)

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…