Mystery condition Nerves? Autoimmune?

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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.


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12 Replies

  • Posted


     You have quite  a list of symptoms and problems that could be attached to any number of conditions. It is obvious to me that you are suffering from what is happening to you. We are all patients here, and so even if someone said,  "I had that symptom and it was this"; it may not be true for you. I would recommend finding a really good doctor who knows integrative medicine (that is knowledge of alternative medicine blended with traditional medicine) to help you weed through the symptoms and tests. You may have several conditions going on, not just one, so a qualified doctor is your best bet. Ask your friends and community members if they know anyone they could recommend who is skilled at diagnosis and integrative medicine. Good luck!

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  • Posted

    Hi Humdiddydum


    It seems you have quite a few health issues. I didn't see any results for blood work you may have or should have taken. My suggestion to you is to find a "good doctor" to do a thorough health checkup on you. For minimum, you need a complete blood test.  With as many complaints as you have, medical tests should show something.

    Good luck to you! 

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    • Posted

      Hey I've had a big health check up privately which showed nothing much apart from some back issue. But i've had a Neuro appointment today which was promising bloods taken and brain MRI in the next 6 to 8 weeks. Fingers crossed we get to the bottom of it.

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  • Posted

    Sounfs in some ways like the issues I had. I have a form if vasculitis. Blood work and scans often normal. I think you should see a rheumatologist. Sorry to say it but if you are in Australia they are pretty dreadful at diagnosing these sorts of disorders.
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    • Posted


      I'm based in the UK so that's hopeful.

      I had a flare up on Saturday and i'm not sure why but now it feels like all my nerves are buzzing and overstimulated. I can feel them buzzing all the time. The good news is I feel more present but the bad news is simple things like taking a shower make my muscles feel like they're constricting me. Walking around makes me feel very spaced out and it takes my body a long time to calm down afterwards. Last time this happened it took weeks to calm down. None of my sensation has come back either so I just feel this buzzing and my whole body feels like it's zingy and over alert.

      I'm in a lot of pain all over my body and the pain feels more intense than previously. Its like someone switched a light on and whats left of my body has gone into overdrive. It's not so bad when it's died down a little but when it's bad it's unbearable.

      Seeing a Neurologist on Friday so hopefully he can help explain these ridiculous symptoms or put me at ease at least. Might bit the bullet and pay for a private Rheumatologist if the Neuro doesn't turn anything up. 

      This has been the worst 9 months of my life I hope I find an answer soon

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  • Posted

    Get thee to a good doctor! The worse pain sounds like neuropathy (nerve numbness & tingling) usually caused by nerves being pinched or damaged. I have it also, and the doctor I saw said it could lead to loss of muscles, poor circulation and even gangrene and amputation! Don't wait to seek help for this!

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  • Posted

    Hi Humdiddydum, I'm in the U.S and I deal w 75% of the symptoms you've described. Have you seen a Rheumatologist and a Neurologist that specialize in MS and Autoimmune disorders? I lost vision in my left eye over a year ago and started having muscle spasms that feel like Charley horses all over my body, nerve pain, loss of of smell and taste, overactive bladder, twitching...I see three specialist and they all agree that I'm in the early stages of MS but I also have a positive ANA and Lupus like symptoms.

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    • Posted


      Thanks for your response! hear you have the same symptoms. I'm sorry to I've just seen a Neurologist today. He's thinking it's my Limbic system in the brain causing the issues. I'm getting an MRI of my brain but that wont be for 6-8 weeks on the NHS here so around Christmas! He's taken lots of bloods though to test for some Autoimmune and Limbic Encephalitis....which sounds nasty but I'm just glad I've got past the GP stage and to a specialist who didn't seem confused by my symptoms.

      I feel like I need my Spine scanning too as the pain is so bad sometimes but he said he wants to scan the source of the issues and then go from there and I trust him. I too worry about MS and I have had a few things suggested like Lupus and Sjordens Syndrome along with sarcosis? I hate that these thigns are so hard to not only get to a specialist on but also diagnose. 

      I've had meningitis and Chronic Fatigue although I'm doubting my initial CFS diagnosis as I was just exhausted all the time I never had any other symptoms, either that or I got lucky. It passed and I haven't had any issues with it  since I was 20. The Neuro seemed interested in that.

      Have you had your B12 levels checked? I've seen a lot of people have been misdiagnosed and have B12 deficiency causing all sorts

      Do let me know if you fid anything new out and good luck getting some relief I do believe we'll get some improvement one day.


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