Advice for Next Steps
hi yall. i've had what's suspected to be long covid/ME for about 10 months now with little to no improvement and i would love some advice on what treatments worked for you or what next steps i should take. i have 6 main symptoms:
- dizziness. this is the biggest one. it basically feels like i'm drunk all the time and that i need to lay down. i've ruled out most vestibular disorders. i've already been diagnosed with PPPD and have been working with an FND pt/ot clinic. however, i haven't seen much progress and it's already been two months of treatment. my ot is concerned about why i haven't been improving, but she said that if i did get diagnosed with ME that the treatment would be the same.
- fatigue and brain fog. i think i've been having PEM, but it's not consistent. i was able to go on a trip for work a few months back and i didn't crash, but i literally crashed a few weeks ago because of one stressful night. when i do have bouts of extreme fatigue it feels like i've been poisoned and sometimes it feels like i have a cold/the flu but not always. if this is a form of ME/CFS, it's probably mild since i'm still able to work full time. can't do much of anything else though.
- heart palpitations. i have a tilt table scheduled in two months and a heart monitor going right now.
- headaches/neck pain/pain behind my eyes. i have no idea what's causing this. the pain behind my eyes is actually unbearable sometimes.
- full body pains. these come and go. i'm currently on amitriptyline for it and i thought it was working but i think that PEM makes it worse. my feet hurt constantly and it feels like i worked a 12 hour shift at a restaurant when i'm really just sitting/laying around all day.
- disassociation/depersonalization/numbness and tingling in my face and body. my FND clinic says that it's a symptom of PPPD/other functional neurological disorders, but i want to see if others with LC/ME experience this too.
tests i've done already that have ruled stuff out:
- rotary chair test
- emg
- eeg
- brain mri
- cervical spine mri
- blood tests for lupus/inflammation markers/thyroid disorders/lyme
i'm currently taking amitriptyline, sertraline, a multivitamin, and vitamin b2 supplements.
i don't have much of a life right now because i feel like garbage all the time. i don't go out in public because i'm so dizzy and fatigued, i haven't been able to drive for 11 months because it makes me dizzier. i've been able to hold down a full time job but since things are getting worse i'm afraid that they're going to fire me. i've been completely reliant on my family and it's been extremely demoralizing. i'm definitely in a better place about everything than i was a few months ago but i do want things to get better. i'm considering talking to my neurologist about LDN, but i also don't know if it'll help because i've failed a lot of medications.
i know that nobody can give me medical advice on here but i would love some advice or direction on next steps forward. thanks, i appreciate it more than you all know <3