(F23)  
I’ve been SO sick for 4 years now. I’ve been diagnosed with severe ME/CFS but I feel like my symptoms are so atypical. I barely even have fatigue. Yet I’m so ill Im almost completely bedbound. I don’t even know if mental or psysical activities makes me worse. Sometimes if I do a huge activity I won’t flare but then a week later when doing something very minor, I do. Low barometric pressure also triggers my symptoms. I know you can’t diagnose me, but has anyone ever experienced something similar? I feel so desperate for an answer. If you have experienced something similar, what did you do? Who do I contact? How do i figure this out?

Symptoms:

**Head / Cognitive**  
Pressure inside the head  
Pressure in the face (especially in the center of the forehead, eyebrows and between the eyebrows, around the eye, and along the side of the nose; mostly on the left side)  
Pressure on the top of the head, and pressure and pain at the base of the skull  
An extremely unpleasant sensation in my head that is difficult to describe (almost as if someone scraped a knife along my scalp and brain)  
A very strange sensation inside my head, almost as if the inside of my head is numb. It is impossible to describe.  
A feeling that my brain is “boiling”  
Headaches  
Nausea originating from the head symptoms. It feels like pure nausea inside my head.  
Brain fog (difficulty remembering things, forgetting names, and misplacing objects)  
Difficulty concentrating  
The sensations in my head are almost impossible to explain because I don’t think there are any words that accurately describe them. I had never experienced anything like this before I became ill.  
It often feels as though the blood vessels in my head are “bursting.”  
**Skin / Hair / Nails**  
Pain and tenderness at the back of my scalp (as if I had been hit with something hard)  
Sore, red scalp (small sores, itching, dandruff)  
Hair loss  
Symmetrical r@sh on both cheeks (does not itch or burn and cannot really be felt, except that it sometimes feels slightly warm when severe)  
Purple, net-like discoloration over my entire body, including my abdomen and face  
Weak nails with horizontal ridges on both thumbnails  
Dry skin  
**Mucous Membranes**  
Red spots on my tongue (not painful, but can become slightly sore or sensitive when severe)  
Red, irritated throat and pharynx (not painful, but sore and inflamed)  
Constant post-nasal drip  
Occasional nasal congestion  
Watery eyes (without irritation or itching)  
Almost daily nosebleeds. They occur every time I feel unwell. The bleeding comes from different areas each time. It is often so far back in my nose that the blood runs down my throat instead of out of my nose.  
Redness and fragile skin inside my nose  
**Vision**  
Blurred vision  
Flashing lights in my vision  
**Gastrointestinal**  
IBS (diarrhea, constipation, abdominal pain, and many food intolerances)  
Nausea originating from my stomach  
**Sensitivities**  
Sound sensitivity  
Light sensitivity  
Temperature sensitivity (mainly heat intolerance; I am almost always extremely hot and sweat excessively)  
**Sleep**  
Light sleep  
Wake up very easily and multiple times during the night  
Night sweats (extremely severe; I often wake up completely drenched even when my room is freezing cold)  
**Orthostatic Intolerance**  
Purple discoloration of my legs and arms when standing  
Chest pain when standing for prolonged periods or if my heart rate rises above approximately 105 bpm  
Significant increase in heart rate when moving from lying down to standing  
**Heart**  
High heart rate when I feel unwell  
High heart rate after eating fatty or sugary foods  
Chest pain  
Chest pressure  
**Other**  
Fatigue  
Muscle weakness (only on bad days and not very often)  
Muscle pain after using my muscles too much (not daily). I have had this since childhood. It is not muscle soreness but actual muscle pain.  
Frequent urination  
Increased sensitivity to stress  
Personality changes (which could of course be due to my illness and situation)  
Constant thirst  
Physical sensations of anxiety/stress  
Muscle twitching

What to do when you don’t have an answer after years?