Please help, questions at bottom of pem/mecfs
I've been dealing with Long COVID for almost 5 years now, and honestly, I'm terrified.
COVID didn't just make me sick. It took my life apart.
Before COVID, I was active, adventurous, traveled constantly, storm chased, worked hard, and rarely feared anything. Since then, each infection has seemed to leave me worse than before. Whether that's Long COVID progression, reinfection effects, immune dysfunction, autonomic dysfunction, or something else entirely, I don't know. What I do know is that I have never gotten my old life back.
Over the years I've been diagnosed with:
- Long COVID
- Ehlers-Danlos Syndrome (EDS)
- Cranio-Cervical Instability (CCI)
- Vascular Eagle Syndrome
- May-Thurner Syndrome
- Loss of cervical lordosis
- Persistent Postural-Perceptual Dizziness (PPPD)
- Vestibular Migraine
- Mast Cell Activation Syndrome (MCAS)
- ME/CFS
- POTS / Dysautonomia
- Lyme disease
- Reactivated Epstein-Barr Virus (Mono)
- Chronic Vitamin D Deficiency
- Spinal cord syrinxes/cysts
- Small vessel abnormalities involving the brainstem
Symptoms I've dealt with include:
- Severe dizziness and instability
- Chest pain and pressure
- Air hunger and shortness of breath
- Extreme fatigue
- Brain fog and cognitive dysfunction
- Vision changes
- Internal vibrations/buzzing
- Shakiness
- Head pressure and headaches
- Neurological symptoms
- Food reactions and sensitivities
- Sensory sensitivity to sound and light
- Sleep disturbances
- Waking up jolting awake repeatedly
- Adrenaline surges
- Feelings of impending doom that I never experienced before COVID
- Episodes where I genuinely felt like I was dying
- Exercise intolerance and post-exertional crashes
I have remained largely unmedicated because I've had severe reactions to medications in the past. Some of those experiences were so bad that they left me genuinely fearful of trying new medications.
Right now, my wife, father, and several family members are sick with what appears to be a respiratory virus. We have not been able to find COVID tests locally, so I cannot confirm what it is, but symptoms include sore throat, fever, body aches, cough, runny nose, sweating, and fatigue.
I have started developing symptoms myself, and I am scared beyond words.
After nearly five years of fighting this, I feel like I have lost nearly everything that made me feel like myself. My health, my independence, my confidence, my ability to trust my own body, my ability to plan for the future, and many of the things that once brought me joy.
For those who have had Long COVID for years and have dealt with reinfections in 2025 or 2026:
- Did reinfection worsen your Long COVID?
- Was it a temporary flare or a lasting decline?
- Did anyone return to their previous baseline afterward?
- Are there any symptom patterns people are seeing with the current variants?
- Has anyone found anything that helped reduce the chances of a major setback?
- If you've had Long COVID for 4-5+ years, how did your body handle reinfection?
I'm not looking for false reassurance. I'm looking for honest experiences from people who have actually lived through reinfection while already dealing with established Long COVID. I am truly terrified, like. Beyond anyone's understanding terrified. I can't do it again. edit to add, my employer fired me, no insurance now, and still practically bed/house bound.
Thank you for reading.