Mystery condition Nerves? Autoimmune?

Hi Everyone

I'm pretty desperate so I’m looking for anyone who can identify with or help get to the bottom of what is happening to me. Be prepared it's a long complicated story. I realise that a lot of these symptoms can be attributed to depression or anxiety but after 8 months of Psychotherapy, tablets and CBT things continue to get worse. I'm looking for answers elsewhere. Any suggestions of anything I could investigate would be very welcome. I hate what is happening to me and really want to help get myself well again. 

In January this year I started feeling slightly dizzy with my heart feeling like it was struggling when walking home from work. I had pain in the left side of my head and tenderness, little hard painful bumps I could feel behind my ears on the bone. I started belching a lot and I also had a lot of left shoulder pain and pain in the back of my ribs on the left side that was tender to the touch. I was exhausted and sleeping early but not really sleeping restfully and always waking with a jolt.

I started feeling quite out of it and spaced out I took time off work as the doctor said it was stress. I had been working quite hard so I agreed and took time off. From that point things deteriorated pretty quickly. I nodded off on the sofa and woke up gasping for air  and from that point on I could no longer nap during the day and my sleep became very difficult. My insides feel deadened or backfiring I was gassy and burping my stool was yellow and my heart was going nuts then  going really low then going nuts again my whole body seems like it was in shock or spasm.

 I was very anxious and started getting heart palpitations my brain felt like it was shifting between either stress or this weird high feeling.

I was not having the same reaction to music (goosebumps etc) as I previously used to and I felt in a fog and deadened. Pain in my head remained and i realised I couldn't pop my ears. Tinnitus arrived and upon inspection my sinuses were completely inflamed to the point where breathing through my nose is very difficult. My face felt inflamed and my eye lids puffy. I felt like I was slightly detached.

Docs prescribed my Sertraline Anti-depressants and Citalopram which made my whole body spasm constantly and I had awful intrusive thoughts and had to call the mental health team out. I gave them both up after only a couple of pills it was so bad. I was told i'm probably not suited to them. 

The left side of my head was very tender and still is. 

My jaws felt inflamed as did my neck and chest even the breast muscles by my armpits were tender. My rib cage is tender and tummy muscles are tight like they are contracted. My sides are the same under the rib cage is sore to the touch. I have bad back pain in top,mid back and lower back. All of these issues remain.

When I sit up or walk about for too long I get fullness in my ears and tinnitus comes on. I have to sleep on a cervical neck pillow now otherwise i'm in pain and my neck doesn't feel supported.

There was and still is tension coming from the side and back of my skull down my neck and down my spine and front all the way to my lower back. I used to be in a lot of pain in my face and my body which would almost spasm for ages then suddenly click off.

I had a throbbing on the back of my skull which I mistook for adrenaline pumping nothing 

seemed to control it until one day that part of my neck went dead I couldn't feel the throbbing of anything else. I didn't really care because the throbbing had stopped but what I didn't realise was this was going to be the start of a slow loss of sensation throughout my body.

When I say sensation I mean internal sensation so if someone touches my neck I can feel it but I can't sense when I get a hot neck or feel anything in the muscles it's like the skin died. I only feel pain if  I prod my neck but i can't feel anything else there anymore

This process slowly happened throughout my body over weeks and months. I was laid in bed one night and my body felt like it was struggling and my heart was racing and then like a light being switched off my scalp and chest lost feeling. I thought I'd had a stroke. I went from feeling my heart racing to dead chest I cant even feel the fresh air of a deep breath. In my scalp I no longer felt stress or pressure I no longer felt anything it's like my head died. Everything above my forehead died. After I lose feeling my body feels like it's shuddering or in shock. 

This process has gone through my whole body bit by bit. Usually happens after i've been sat up for a long period or active around the house but bit by bit I've lost sensation all over my body and face. The last bits to go were my vagina and anus and some sensation around my eyes. Again I can feel touch but I cant feel anything else. I've been for massages and it feels like nothing just someone touching my skin I feel nothing relaxing. It's like my all my muscles and fat tissue is no longer carrying the information back. It makes me feel like a shell. Like two eyes staring out a head and my body feels like a bag of bones with nothing to cushion it. 

*I can feel my bones and if I kneel or lay funny I feel like I can feel nerves twitching or pulsing it's pretty scary not feeling anything going on in your body.

*I can no longer feel my own body temperature I get a sense of sweating but I don't feel the heat or cold. I realised this when I got sunburnt and didn't feel it. I could feel the sun on me but I couldn't feel the burn afterwards even thought I was very burnt.

*I can't feel when my bladder is full, I can't feel my heart beating fast I have to use my fitbit which is alarming when I see it at 157 and i'm not even flustered. I'm hyper sensitive to heat and cold I get a red rash when I come out of the shower.

* I can't feel hunger or fullness in my belly

* I can't feel any sensations in my head like stress, tiredness or pressure when i'm pushing out a pooh really hard. 

I'm physically quite weak and I get light headed if I spend too long walking around and If I'm talking to someone for too long the same thing happens. I have to lay down for a while and sometimes I get more energy sometimes i don't. I used to run a lot and I can no longer do this. I stopped getting any adrenaline rush or feeling anything  but mainly it was hurting my back and no I have no energy. I can't even do yoga because of my shoulder.

Sleep – I started off finding it hard to sleep more than an hour or two before a jolt would wake me up. As I lost sensation I slept better but It feels like something is keeping me from sleeping restfully. Vivid dream every night. Some nights I sleep through to 4 or 5 then wake for the loo and go back to sleep other nights I’m up with a jolt 3 or 4 times. Sleep feels the same as being awake.

Other odd things happening...

*Red rash and blue vein on my chest which was never there before and some small capillaries under my breast which were not there before

*Blue vein on left temple which was not there before

*Gum disease

*Sense of smell changes daily

*Sense of taste changes daily.

*Feel out of it mentally like my brain isn't working. 

*Breathing feels shallow and feel like i'm holding my breath a lot.

*Frequent Urination get up in the night to go to the loo.

*Body never feels relaxed tension from skull to bottom of the spine all the time even when I don’t feel stressed.

One last thing my symptoms flare up in stages so last week I felt like my tummy and chest were pushed out constantly and I felt like I couldn't breathe sitting up, then My jaw was really inflamed yesterday but today I'm suffering a lot of mental symptoms but my physical ones although still an issue seem to be in the background. Once I’ve lost sensation somewhere it never comes back.

Actions taken

Antihistamine Spray – Nose – No affect

Steroid Spray nose – No affect

Osteopath and Chiropractor for my back – not sure if they made things worse not better

Acupuncture – Reikki – Nothing

Omega3 Oils – Seeemed to make me feel depressed

Electrolytes - Normal

Tested for Vit B – Level in normal range

Tested for Vit D – Normal range

Tested for Iron – Normal

Full Blood Count – Normal – some low white blood cells but overall WBC normal range

Thyroid Function – Normal

Lyme Disease – Negative

Dentist – Have troublesome wisdom teeth and got fitted for a splint to stop my grinding

Beta Blocker - Little to no affect 

Antidepressants – Severe reaction – Discontinued

Psychotherapy - 4 months weekly appointments - She didn't feel it was psychological

CBT - Online and face to face - Still completing 

Started a Gluten Free diet. - Stool is looking better but still yellowish.

0 likes, 12 replies