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Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS). |
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I am a previously healthy young adult. Prior to the onset of my current symptoms approximately 1.5 years ago, I was stable on my prescribed amphetamine-based medication (Adderall) for a pre-existing condition. My baseline health was excellent, and the medication was highly effective, providing clear benefits without notable side effects or the "masking" quality it seems to exhibit now against my current symptoms.
Trigger Event: Approximately 1.5 years ago, I experienced a sudden, acute onset of debilitating symptoms. This occurred following several days of consuming a dietary supplement containing Alpha-GPC (300mg) and Phosphatidylserine (100mg), taken simultaneously with coffee. Initially, these doses provided some temporary mood and focus improvement. However, after a few days, upon taking a dose, I abruptly experienced the onset of intense head heaviness/pressure and brain fog. It's crucial to note that I did not combine my prescribed amphetamine medication with the supplement/coffee combination when these symptoms acutely began. I had no preceding symptoms prior to this specific trigger event. There were no significant life stressors occurring around this time. Persistent Symptoms (Ongoing for ~1.5 years): Severe, Chronic Fatigue: I experience profound, persistent fatigue that significantly impacts my daily functioning. Profoundly Non-Restorative Sleep: Regardless of sleep duration (typically 8-12 hours), I wake feeling extremely unrefreshed and profoundly exhausted. It is extremely difficult to get out of bed. This is primarily a feeling of exhaustion/lack of energy, rather than an overwhelming urge to sleep or easily falling asleep inappropriately during the day (hypersomnolence). I do not typically take daytime naps. My sleep study indicated normal snoring but was otherwise reported as unremarkable, ruling out significant sleep-disordered breathing based on the information provided to me. I do not recall unusual movements during sleep, though initially after onset, I had a constant, mild sensation of weakness/numbness in my arms. Significant Cognitive Difficulties ("Brain Fog"): This manifests as slowed thinking, mild confusion, difficulty multitasking, and mild short-term memory issues. These cognitive symptoms seem to worsen when my fatigue or head pressure is more intense. I haven't noticed if symptoms improve temporarily with high distraction. Constant Head Pressure/Heaviness: I experience a distinct and constant sensation of generalized head pressure. It feels like a heaviness and mild tightness, akin to a constant band across my brain, and is notably felt behind my eyes as well. I also experience a heaviness sensation in my eyes, reminiscent of the effects of cannabis but without ocular redness. This pressure is constant throughout the day but fluctuates in intensity – some days are worse than others. It is not affected by positional changes (lying down vs. standing up). This sensation is distinct from typical headache pain; I do not experience significant pain elsewhere in my body (muscles or joints). I do not experience pulsatile tinnitus or any "whooshing" sounds. Marked Decrease in Motivation and Energy Levels: This has led to significant lifestyle changes, including social withdrawal. Mild Lightheadedness/Dizziness: This often accompanies the head pressure and might feel slightly more pronounced upon waking. It is not specifically related to orthostatic changes (standing up). Symptom Fluctuation and Triggers: My symptoms are chronic but fluctuate in intensity without a clear pattern. Identifying consistent triggers is difficult. Occasionally, after running, I experience a temporary worsening of symptoms immediately afterward, but this is inconsistent. There's an unconfirmed possibility that caffeine might cause mild worsening. Crucially, I do not experience a clear pattern of delayed symptom exacerbation (12-48 hours post-exertion) characteristic of Post-Exertional Malaise (PEM). Emotional stress does not noticeably alter symptom severity. Lack of Sensory Sensitivities/Intolerances: I have not noticed increased sensitivity to light, sound, smells, touch, or temperature, nor have I developed new intolerances to foods, medications, or environmental chemicals since onset. Relief Factors: Nothing provides consistent relief. My prescribed amphetamine may mask the fatigue and cognitive symptoms to some degree, allowing function, but it does not alleviate the underlying sensations or provide true relief. On one isolated occasion, I felt a temporary improvement in fatigue for a few days starting the day after aerobic exercise, but this effect has not been reproducible. Absence of Autonomic Symptoms: I have not experienced palpitations, excessive sweating, temperature regulation problems, or significant changes in bowel/bladder function. Comprehensive Diagnostic Workup (Largely Normal/Negative or Pending/Invalid): Neurological Imaging: Brain MRI with and without contrast was reported as normal. Specific findings included: "normal appearance of the ventricular system, cisterns and sulci... no evidence of infarction, hemorrhage or space occupying process... Following gadolinium injection, no evidence of pathological enhancement... cranio-cervical junction is normal... In the T2 and FLAIR sequences there is no evidence of abnormal signal intensity. Conclusion: the examination is within normal limits." No specific mention of venous sinuses, empty sella, or optic nerve sheaths was noted in the report I received. Neurophysiology: EEG and a Sleep Study were reported as normal. I do not have specific metrics from the sleep study (e.g., AHI, RDI, arousal index, sleep stage percentages, alpha intrusion) beyond the overall 'normal' interpretation. Ophthalmology: Examination ruled out signs of increased intracranial pressure (e.g., papilledema). Blood Tests: Detailed standard blood tests (including vitamins, minerals, TSH) were within normal limits. Lumbar Puncture & Cerebrospinal Fluid (CSF) Analysis: Basic CSF: Glucose-CSF: 70 mg/dl (Ref: 50-80) Protein-CSF: 37.9 mg/dl (Ref: 15.0-45.0) Cell count-CSF: 2 cells/mm³ (Ref: 0-5), identified as Mononuclears. Lactate-CSF: 13.4 mg/dl (Ref: 0.0-30.0) Infectious Workup: Gram stain showed no organisms or significant cells; aerobic culture and broth enrichment showed no growth. Immunology: CSF Oligoclonal IgG Bands: Negative. Paraneoplastic Neurological Syndrome (PNS) Profile - Serum: Negative for anti-Ma2, Ma1, Amphiphysin, CV2, Ri, Yo, Hu, SOX1, Tr (DNER), Zic4, and GAD65 antibodies. Paraneoplastic Neurological Syndrome (PNS) Profile - CSF: Results were Invalid for anti-CV2, Ma2, Ma1, Amphiphysin, Ri, Yo, Hu, SOX1, Tr (DNER), Zic4, and GAD65 antibodies in CSF. Autoimmune Encephalitis Panel - Serum: Results are Pending for anti-NMDA Receptor, CASPR2, AMPA1 Receptor, LGI1, AMPA2 Receptor, and GABA B Receptor antibodies. Autoimmune Encephalitis Panel - CSF: Results are Pending for anti-NMDA Receptor, CASPR2, AMPA1 Receptor, LGI1, AMPA2 Receptor, and GABA B Receptor antibodies in CSF. Family History: There is no known family history of similar chronic fatigue, pain, neurological, sleep, autoimmune, or mitochondrial conditions. Subjective Interpretation: The persistent head heaviness/pressure and the sensation of eye heaviness (similar to cannabis effects without redness), combined with the profound, non-restorative fatigue and cognitive difficulties that were not alleviated by modafinil (which I have tried), leads me to suspect a primarily cerebral or central nervous system origin for my symptoms. |
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