Hi, I'm really hoping someone might have some thoughts about this or have something similar. Anything at all would be hugely appreciated.
Just over a year ago, maybe early spring 2016 I noticed an aching pain behind my sternum, (upper abdomen centre just below the bone). It was there first thing in the morning when I woke up but it would fade after a while. I ignored it for a few months until it worsened then went to my gp. He eventually put me through to a gastro. Who did some bloods etc and said it was probably reflux or hypersensitive oesophogus. Anyway, he gave me some anti reflux tablets which did nothing. As time went on the pain got worse and led to me waking up in every night shivering with sweat and a very specific pain that felt like it was pushing down really hard on a point at the top of my epigastrum (if that's the right word) right at the top centre of my abdomen just below the central chest bone. This got worse and I hardly slept for more than 3 or 4 hours a night before being being woken up by this pain which started going round to my back as a sharp ache along the shoulderblade. I would be flushed, sweating, dizzy nauseous. It was really horrible, none of the meds did anything. I also developed a metallic taste in my mouth for several months and had extreme fatigue and skin irritation. Although during the day it tended to settle down. I was a total mess and my gastro ordered ct scans, bloods, colonoscopy and endoscopy. My BM's were also all over the shop. I was terrified that it was going to be something serious like pancreatic cancer. Anyway, after the tests my gastro came into the hospital room with the ct scan results and said they were clear and I broke down in tears, I'd just had a young son and the thought of not watching him grow up was on my mind. Anyway, he prescribed me with amitrypyline, ranitidine, esomeprazole, diazepam and a bunch of other sprays and pills. He suggested it might be reflux/ a hyper sensitive oesophagus. Anyway, my initial happiness turned to despair as nothing worked in any way and I kept getting sicker (this was around august 2016). Since then I've had acid reflux tests which haven't shown any acid reflux and the pain has been getting worse. Every time I saw my gastro he'd say why don't you try a bit more of this drug or a bit more of that. Nothing touched the pain and attempts at going dairy free, caffeine, processed meat, anything with high fat, chocolate free did nothing. This year the pain has been changing - getting worse and I've also noticed a fair amount of flatulence and wind/gas. The pain has also become less specific in time and location and started to drift into the daytime. My BM's go from constipation to explosive diarrhoea and now my whole epigastric area feels like I've been kicked in the abdomen from the second I wake up and then to a lesser extent when I go to sleep. My stomach aches as well (this is all on my left hand side I should mention). I've stopped working because of it and the last few months have been terrible. I kept asking my gastro if it could be something more serious or even ibs and he said 'no' and said they'd already run the tests and they were fine yet week by week I get worse. A couple of weeks back I broke down completely in front of him and asked if there were any other tests I could try. He said a PET/CT scan. I've had the scan today (June 2017) but am in terrible pain and discomfort with constant epigastric and left stomach and upper back pain. Also constipation/ diarrhoea and wind/ gas. This week I made the mistake of looking up my symptoms on line and after hours sifting through every potential cause, including IBS, the only thing that was identical was the stories of people with pancreatic cancer. I figured that it couldn't be that as I'd had a CT scan last year, however after some digging I found out that those don't always detect it, especially if the Tumor is small. Im 45 years old, male, I used to be a heavy drinker and smoker (which I now regret more than anything) and I guess what I'm hoping is that somebody out there might have a chink of light to give me some hope during a very worrying time. I should also add the pain doesn't seem to change based on eating or BMs. I've been tested for Crohns and Colitis and infections. Thanks so much for your help.