I been sent this forum after i asked in the cfs forum about my symptoms. Reading up the posts and generally the term i both relate and not. I would love to know which doctor to go to and which tests to ask for, to finally get a diagnosis and treatment.

Ok so here is a summary of my situation. I try to be brief but proper. Please do give me inspiration.

I always been overweight even tho i been atypical anorexic for many years. I gained a lot of weight and couldnt lose it. Got very anorexic until i was fainting regularly. Diagnosis back then was lack if iron and too low nutrition. Years later after therapy, dietarian and fitness coach i feel worse than i ever have and i weight the most i ever have. My fitness coach said he wont take the risk as my fitness level is decreasing over time significantly, and my dietarian is clueless.

Finally, i could convince one doctor to do proper tests and i been sent from doc to doc but everyone is clueless.

Aside of weightgain my issue is as following. Let me try to describe it as best as i can.

I initially described it as lightheadness or dizziness but i been told if the world aint spinning then its a called a headache...

So its a headache??? But no painmeds work? It feels like major exhaustion..

Imagine having an intense cold/flu, you spent a few days battling fever, you were barely surviving and sleeping all day. So basically you feel shit and really tired. Or imagine that you exercised a lot and now after a few busy days you finally got to sleep a few hours. Basically your body is in that dozy exhausted state.

Ok now imagine laying in bed and you feel okish right? But now you have to pee or whatever, so you sit up in your bed and your head does this thing.

Its not a headache, its not fever, its not nausea its just EXHAUSTION. You need to battle gravity, because you want nothing more than to close your eyes, lay back down and sleep for a whole decade. It feels like the world could be on fire, but your brain doesnt care, your body just wants you to lay down NOW. The world doesnt exist, only your bed does, the soft pillow you need it NOW.

Thats how it feels. I got no better comparison.

My head doesnt hurt anywhere in particular, it just feels heavy. If i had to locate a position it feels like pressure on the face triangle eyes-nose. It feels like someone just hardcore facepalmed me but it doesnt really hurt. Its pressure.

I close my eyes, but my eyes dont hurt. I can read normaly and nothing is spinning. I just feel like i need to sleep. Like NOW, no matter where i am or what im doing. And yes if i close my eyes i could within 30s -60s fall asleep, like into a proper sleep.

My muscles feel like i spent 10days awake after running a marathon. My hands wont holdon to anything (like a cup), i kind of lose all sensation in my hands (hot,cold,small motormovement) a lot like sleep paralysis. My legs feel like jello.

But above all my head just makes everything feel foggy. Not visually foggy. I just feel like you woke me up at 4am yelling at me and im like out of my mind. And it gets worse and worse and worse. I cant push through it as doctors suggested.

I will collapse. I will hurt myself (by falling on my knees or dropping stuff), my mind slowly panics "Sit the fuck down" so i rush myself and am low concentration. I start to even slur on my words or lose the ability to make sentences.

It helps to stop moving and just stand there and breathe. It helps when i kneel, to relieve my shaking legs. It helps to sit down. It helps when i lay down. Like it stops pretty much instantly. Like a MP bar in a game that slowly recharges. It takes time but like give me 3min and im totally normal.

Initially i been told to push myself. If i push myself despite this feeling im gonna get a proper headache or migraine and at worst i may be unable to move for about 2days (muscle soreness and dizziness/exhaustion - as described above)

Medically... MRI was done, no findings. EKG (48h) was done w no findings. EKG and bloodpressure under exercise were monitored - slightly elevated heartrate but assumed its due to my state of fitness. I observe my heartrate, resting heartrate (wristwatch monitoring) 45-55bpm, normal daily activities 80bpm, walking 80-95 bpm, exercise 120-180 depending how exhausting it is. I measure my bloodpressure regularly its always optimal.

I got an inhaler for my asthma but lungs are fine.scan of lungs without findings, FEV of 85% without inhaled, when i have a flare i use the inhaler and im fine. ETN doc said im fine gravity wise and checked me through. I have new glasses and that didnt help in the slightest.

Only findings so far :

Low iron, low hemoglobin, low ferriting transferin load but normal ferritin. CRP>60, albumin very low. Low vitamin D - im taking suppliments now but dont feel better. I been taking iron for years, level of iron doesnt rise without suppliments but on suppliments symptoms persist. Slightly deformed erythrocytes but probably due to iron deficiency. Every other test performed was negative so far.

I used to have thyroid issues but eating more has fixed that value as some others improved too. Diabetes was tested and excluded. Cholesterin, cortisol etc was normal.

Im waiting for an oncologist to check me out. I seen pretty much every other professional there is. Everyone says there is nothing wrong with me within their expertese and im sent on my way.

I would appreciate feedback because i feel like without my own research the docs will just sent me home and watch me lose even more of my strength and energy claiming it isnt a physical issue...

Sorry for the long post. Advice appreciated!

Edit: I dont know if its relevant but i always had this thing where when i exercise i will be shivering because my body will get ice cold. I dont sweat but instead my body gets really cold. And if i dont get a heatpack im cold and shivering for hours after exercise. I always had this tho, ever since im a child. No clue if thats worth mentioning