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…