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General health

Please diagnose me - my life is falling apart due to this mystery illness.

72 replies

Painengrained · 29/08/2015 14:03

Please help me figure out what is wrong. I am stuck in the system of best guesses and waiting lists and in the meantime, my relationship is suffering, I have become depressed and have enquired (with horror and disbelief) about putting my disabled child into care as I am struggling to care for her. I desperately want to feel better. I will make this as concise as I can though its been a long four months

At the beginning of May I started having shortness of breath. I was newly diagnosed as Hypothyroid (autoimmune) and as a result, had been putting all symptoms down to that (had felt fatigued, had hair loss, aches and pains, loss of drive etc for months) GP checked me over, Levothyroxine dose tweaked, bloods good, was put down to anxiety. The year had been extremely stressful up to this point so I was inclined to agree. GP also gave me an antibiotic for a rash around my mouth.

The shortness of breath progressed to chest pains and very bad reflux-type-pain. I took gaviscon and made another appointment. I had been taking Tetracycline antibiotic for peri-oral dermatitis so thought it must be that. The day before my appointment, whilst still on the antibiotic, I felt quite ill. the right side of my body felt weak and I just wanted to lie down. Had to cancel all my plans for the day, family had to care for DD. GP checked me over, said it must have been a reaction to Tetracycline and I would start to feel better in a few days.

A few days later, the chest discomfort and weakness progressed to right sided rib pain. Back to the GP, convinced that something more must be going on. GP examined my abdomen, thought it was muscular but could be gallstones. Told me to try relaxation techniques as I could have been holding my body in a 'stress' position and referred me for a gallbladder scan.

Toward the end of May, I had what felt like a gallbladder attack. Extreme pain just below my ribs on the right side, pain going around and through to my back, right shoulder, neck and shoulder blade pain. DH took me to A&E. Bloods were normal, I was advised to wait for scan as surgeons were busy, told to go back if it happened again. It happened again, I went back, a different Dr examined me, thought gallstones as my right abdomen was 'guarding' and the pain was spasming/burning. A scan was set up for the following day, he offered to admit me but as my bloods were, again, normal, said I could go home.

Went for the scan, pain had subsided but was still smouldering. Gallbladder clear apparently, all abdominal organs looked ok. The only thing the scan picked up was that my common bile duct was measuring at the top end of normal (7mm). I was sent to surgical ward for a chat wit the 'experts' who said it was possible I had passed a stone, hence the CBD dilation. Following an examination, they diagnosed a probable ulcer an prescribed 4 weeks of Omeperazole (at a huge dose) followed by an Endoscopy if symptoms hadn't improved.

During the following 4 weeks, I had constant pain. It would peak and trough but was always there. It felt as if it were emanating from my right ribs, into my back, up through my shoulder blade, into my neck, into my armpit, down the inside of my arm, in my chest, even down through my hip and down my thigh. The whole right side of my body was suffering. I had severe constipation and nausea. I would wake at 3-4am in severe pain. Codeine made things worse, Tramadol made me feel very strange so had to discontinue, Buscopan helped a little, paracetamol was pointless and I couldn't take any NSAIDs as everyone was telling me I had an ulcer.

Through June I suffered, I have visited the GP almost weekly. I became increasingly desperate so they contacted the surgeons to set up an endoscopy. The surgeons refued and said I needed a stool test for H.Pylori bacteria. I had to come off the Omeperazole for two weeks prior to the stool test. It made no difference. The pain was the same, never letting up, I was becoming less able to handle it, weak from exhaustion and too scared to eat. I was devastated at the surgeons U-turn, I felt as if everyone thought I was exaggerating.

The stool test came and went, negative. Here I hit a low point, weeks of non stop, fluctuating pain, home life suffering, relationship suffering, exasperated and frustrated. GP referred me for urgent endoscopy which took another few weeks... in the meantime, I found a swollen lymph node above my right collarbone. I made the foolish mistake of googling, lymph nodes here are bad news. GP took bloods to check for inflammation and a full blood count to try and abate my fears as by this point I am extremely worried that something malignant is causing my prolonged pain.

I was also sent for an MRI on my spine as one of the GP's thinks I could have a trapped nerve/disc problem due to the - sometimes extreme - right hip pain i've been experiencing. I am waiting on the results of this. The hip pain seems to have come after the rib pain. if I stand for too long or walk for more than a few minutes, I get a searing pain in my right hip and down the inside, or front, of my thigh. I made the mistake of going for walk a couple of weeks ago and spent the night in agony with a leg that felt swollen and boiling hot but looked normal. I dont know if it is linked or as a result of my right side pain.

I had the endoscopy almost two weeks ago. Traumatic. And also negative. No ulcer, no gastritis, no cancer, no reason for this pain. The only thing it showed was some mild inflammation of my oesophagus. The Dr doing the exam said that would not be causing the pain that i'm suffering. The nurse looking after me said all my symptoms sound like my gallbladder. My bloods came back normal apart from a low Fibrinogen level which wouldn't be causing my pain (dr wants to investigate further but apparently it was low in 2013 too so isn't a new issue)

Last week I went back to the GP, with DH, to tell him that im struggling with life. I can barely look after DD, she requires constant care and I can barely function. Everything is an effort. I am in constant pain, couldn't sleep, hadn't slept in three months. He was very understanding, asked me to go over my symptoms and prescribed Mebeverine to take before meals and Mirtazapine to help me sleep, increase my appetite and 'lift my mood'. It certainly does help me sleep, it knocks me unconscious. And im eating everything in sight so at least I might put some weight back on, I lost a stone during this nightmare. He thought it could be Sphincte of Oddi dysfunction, which I've read is untreatable.

I have been urgently referred to Gastroenterology, it will still take a couple of months. A couple more months for me to google, to try desperately to figure out what the problem is and to worry myself sick. My worst fear is that it isn't going to go away, that this is my new normal. I cant stand up for long, some mornings I feel as if my pelvic bones have fused it hurts so much. The rib/abdo pain is constant but flares, the flares last days, it feels like there is something in there that shouldn't be or that something is inflamed. I am constantly bloated, sometimes painfully distended. Eating vegetables and meat seems to make things worse. My skin feels sore on my torso, possibly as a result of constant pain?

I do have Endometriosis but it has never felt like this. My gyne has agreed to do a laparoscopy to see if any has re-grown that could be exacerbating my pain, that op should be toward the end of the year. I am desperate for some relief, desperate to be a proper Mum and carer again. DH and I are arguing, we are both very frustrated. I am obviously depressed, I see no light at the end of the tunnel, whatever this is it has stolen our summer, it has stolen my ability to live my life. We have had to ask our disability social worker for a carer to help a few hours a week but DH is having to do the rest of DD's cares whilst working (from home, thanks to a very understanding boss) until she goes back to school. The holidays have been hellish.

I did book a private appointment with a gastroenterologist but realised we woudn't be able to afford any tests they requested so i'm having to rely on he NHS.

If anyone has made it to the end of this post, do you have any idea what is wrong with me? My life is falling apart, I am desperate.

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lougle · 29/08/2015 14:12

Have you had your vitamin D levels checked?