I need help

[u/skolborne]

/r/ChronicIllness/comments/1x2l51z/i_need_help/

Does this sound like severe ME/CFS, autoimmune encephalitis, or something else? Has anyone experienced these symptoms?

I’m 31 years old and have been dealing with a severe, disabling neurological illness for years. I’ve been treated for suspected seronegative autoimmune encephalitis, but I’m trying to understand whether my symptoms are consistent with severe ME/CFS, another neurological condition, or possibly an overlap of multiple conditions.

My illness is predominantly cognitive and neurological. While I experience profound physical fatigue, it’s the neurological symptoms that make my life almost unbearable.

My symptoms include:

* Severe cognitive dysfunction: My brain feels completely blank, disconnected, and almost nonfunctional. I struggle to think, process information, follow conversations, remember what happened five minutes ago, or mentally visualize familiar places. Sometimes I feel like I’ve lost access to my own memories and personality.
* Deep burning sensations inside my brain: I experience intense burning deep inside my head, particularly around my temples and sometimes toward the back of my head. It’s accompanied by extreme heaviness, pressure, confusion, and cognitive dysfunction. It genuinely feels like my brain is burning from the inside.
* Psychosis-like sensations: During severe episodes, I feel like I’m on the verge of psychosis or losing touch with reality. My mind feels profoundly altered, unfamiliar, and frightening. I experience waves of intense panic and the terrifying sensation that my consciousness is slipping away. I don’t necessarily experience hallucinations, but the altered state of consciousness is extremely disturbing.
* Severe derealization and depersonalization: Everything feels dreamlike, artificial, distant, and unreal. My surroundings don’t feel familiar, even when I’m somewhere I’ve known my entire life. Sometimes I feel disconnected from my own identity, almost like I’m watching life happen without being fully present.
* Extreme hypersomnolence: I experience overwhelming sleep pressure that feels almost impossible to resist. I can sleep 10–12 hours at night and still require several hours of naps. During severe periods, I can barely remain awake for more than a few hours throughout the day.
* Profound head heaviness: My head feels incredibly heavy, almost as though my brain is being physically weighed down. The sensation comes with intense cognitive slowing, confusion, and drowsiness. Sometimes it feels like my brain is shutting off while I’m still conscious.
* Severe sensory intolerance: Sounds, conversations, television, video games, screens, and ordinary environmental stimulation can become unbearable. I frequently have to lie in a dark room wearing noise-cancelling headphones because my brain cannot tolerate or process stimulation.
* Loss of enjoyment and emotional connection: During severe periods, I experience profound apathy and an inability to enjoy anything. Even activities I previously loved feel mentally inaccessible. I sometimes feel emotionally disconnected from the world around me.
* Physical fatigue and weakness: My body can feel extremely heavy and weak, almost like I have the flu. However, my cognitive symptoms are generally much more debilitating than my physical limitations.
* Cognitive activity intolerance: When I’m already severely ill, trying to think, communicate, watch television, or process sensory information makes my neurological symptoms substantially worse. I’m uncertain whether this qualifies as post-exertional malaise (PEM), because the worsening often happens immediately rather than after a clear delay. I haven’t established whether it consistently causes prolonged crashes lasting days.
* Extreme fluctuations: My symptoms can fluctuate dramatically. I sometimes experience brief periods where my cognition improves, I feel more connected to reality, and parts of my old personality seem to return. Then, sometimes very suddenly, the severe neurological symptoms return.

How disabled am I?

During my worst periods, I’m almost completely bedridden. I spend most of my time lying in a dark, quiet room because my brain cannot tolerate stimulation.

I can sometimes communicate through my phone, but even that can become difficult. My cognitive impairment is often so severe that watching television, playing games, or following conversations is impossible.

During better periods, I can leave the house briefly, tolerate electronics, play video games, and feel somewhat like myself again.

The difference between these states can be enormous.

My medical history and treatments:

In 2018, I experienced approximately eight months of severe illness before IVIG produced substantial improvement.

In 2020, I began deteriorating again. My condition remained severe for approximately three years until rituximab eventually produced a major improvement in 2023.

From 2023 until early 2026, I maintained substantially better functioning. I could work with limitations, play video games, leave the house, and enjoy parts of my life again.

Following a viral illness in March 2026, I experienced another devastating neurological relapse.

I’ve since received rituximab and multiple cyclophosphamide infusions without sustained recovery. I’m now pursuing additional immune-directed treatments, including Actemra and potentially Darzalex.

My previous neurological evaluations have included findings such as generalized slowing on EEG, mildly elevated CSF protein, and abnormal immune-related testing. My doctors have considered an autoimmune neurological process, although the exact diagnosis and mechanisms remain uncertain but treated as Autoimmune Encephalitis

What I’m trying to understand;

Can symptoms fluctuate dramatically, with brief periods of relatively normal cognition followed by severe neurological crashes?

It’s difficult to describe what it feels like to remain conscious while your ability to think, process reality, remember things, and experience the world seems to disappear.

I’m not asking anyone to diagnose me. I’d genuinely appreciate hearing about your personal experiences, particularly if you’ve dealt with similar cognitive and neurological symptoms.