Finally on a CFS waiting list after 5 years of misdiagnosis and meds that made everything worse

Hey everyone. After almost 5 years of likely misdiagnosis, I think I finally have an answer.

It all started in early 2022. After the third covid vaccination I had a severe reaction with high fever, intense fatigue, neuropathic pain. The fever eventually went down, but extreme fatigue and pain stayed (especially in the legs). I used to be a sporty person, and within a month I couldn't run anymore. Within two months I couldn't walk to the supermarket. The worst part was that sleep stopped working, and I'd wake up more exhausted than before. Severe migraines with brain fog and tachycardia, triggered by any kind of effort, became a constant too.

My GP saw me for about three minutes and concluded instantly it was mental health. She referred me to a psychiatrist, who initially diagnosed burnout since I was finishing my MA thesis. But when I completed my degree and spent almost 2 months bedridden from the effort without any improvement, the psy revised it to major depression, anxiety and panic disorder. Since my symptoms were very physical and severe, I had another check where a diagnosis of CPTSD was added to explain the dysautonomic reactions of my sympathetic nervous system, and OCD to explain "fixations" around fatigue, low energy thoughts and the very limited behaviours I had already developed to pace for managing the symptoms. He also suspected a neurodevelopmental disorder, so he referred me to a specialist clinic where I was eventually diagnosed with autism and ADHD.

Along the way, they prescribed just about everything: SSRIs, antipsychotics, zolpidem and more. Nothing helped, and on the contrary most things actively made things worse. SSRIs hit my nervous system regulation hard, antipsychotics affected the metabolism, crushing what little energy I had left.

After two years of this I started fainting from fatigue and ended up in the emergency room twice. Cardiologists and neurologists ran many tests and diagnosed orthostatic intolerance, neurological dysregulation with irregular cardiovascular response to efforts, and severe dysautonomic symptoms. But always symptoms, never an actual diagnosis. Beta blockers and pregabalin followed. The pregabalin helped a bit for the pain and resting, but nothing that improved my condition effectively. The beta blockers actively worsened both my fatigue and my migraines.

4 years but nothing improved, and in the end one last doctor finally mentioned possible dysautonomic failure as a proper condition, but couldn't diagnose it himself. So while looking into that, I came across CFS and its connection to dysautonomic symptoms. I had never heard of it before, but when I read about it I felt like I was reading a precise description of my situation. I brought it up with that doctor, who had no idea what it was, but after reading into it, he agreed it was very likely and sent me to check that. So I reached out to a specialist CFS clinic, joined their waiting list, and almost a year later, they had me recently for a visit in which they told me it was pretty clear I have CFS from the beginning, though a formal diagnosis requires further testing.

Which means another waiting list, potentially up to another year.

Almost 5 years of this drained every piece of energy I had. The wrong meds piled up and left me in a significantly worse baseline than where I started. I can't walk much: groceries are often over my threshold, moving around the city reliably triggers a crash with fainting, tachycardia, dispnea, migraines, brain fog and muscle pain. I can manage washing dishes, cooking simple meals, taking a shower, and at most meeting a friend close to home. That's roughly where I sit right now. Dunno what kind of severity this situation would be?

I had started pacing intuitively far before I ever heard about CFS, it's the only thing it has concretely helped so far. But it's deeply hard managing to survive like this (my parents can't help me), and worse, the financial anxiety on top of everything else is crushing me. Besides the fact that my normal social life has stopped, it's very hard to bear.

How did you handle the misdiagnoses or the waiting lists? The financial situation? More basically, how do you do groceries?
And for those who were on psy meds when diagnosed, did you keep taking them or stop?

Thanks to everyone who has read so far, and in case of any kind of answers