Hi all. I am amazed - and pleased - to have finally found this site, with so many stories that sound exactly like mine.
My pain tends to begin first thing in the morning with a feeling as if my stomach is empty or a tingling sensation. As soon as I feel this, I know what's coming. For the rest of the day the pain will build and build. Late at night the pain will usually reach the point where I can't sit still (I would rate it as a 7+), with my upper abdomen completely rigid for minutes at a time with just a few seconds of relief between each "contraction". The pain occasionally spreads across my back too. The pain continues to get worse and worse, eventually hitting a 10 (if it's not a 10, I would hate to feel pain that is 10!) with almost continuous muscle spasm and swelling of my upper abdomen - it looks like I have a balloon in there. It will stay this way for up to 6 hours, but by then I have eventually gone to A&E (I live in the UK) and been dosed up with IV morphine and IV buscopan. I cannot find the words to describe how severe this pain is. Morphine only just touches it and I have even begged the A&E nurses for an anaesthetic to knock me out so I can no longer feel it.
The pain used to come every couple of months since I was around 17 years old. I'm now 32 and am having an attack at least once per week, with after-effects of transient pain for several days. Needless to say I have visited numerous doctors, had multiple tests (ultrasound, CT, barium meal, gastroscopy, oesophageal function and pH, blood tests, bone mineral scans, etc.) with no abnormalities found, and have tried many different med's. I currently take baclofen (an inhibitor of skeletal muscle contraction), tramadol, and diazepam. A very high dose of diazepam with tramadol really helps to keep the pain at a just bearable level and I haven't needed to visit A&E for quite a while. But I am taking more and more medication to control the pain and I still haven't had a diagnosis - my gastroenterologist currently thinks it's severe muscle spasms of unknown origin.
I've never been able to find a trigger for the attacks. I have tried keeping food and daily diaries, but could find nothing specific that causes the pain. The only thing I have found that sets it off is tiredness and stress - I started my own company last year and since then the attacks have become much more frequent. I had to go to a conference in Barcelona last week and got up at 3am to get my flight. As such, I was tired and stressed about being at this important meeting on my own, and the pain was with me for the whole time I was away. Luckily, I could manage it with a few tramadol during the day as it built, but I had to miss dinner in the evening when it got really bad and I had to take all my med's.
The huge problem for me is that it is obvious that the doc's are getting frustrated and bored with seeing me. It feels as if they don't believe what I am telling them is true and that I am wasting their time or am just after pain-killers. The last time I vistied my GP to increase my dose of pain med's he recognised me and said "Oh...what is it THIS time?". They will never be able to understand how it feels to have this almost constant pain, to lose a couple of night's sleep every week due to pain, and spend the next day feeling with too drugged-up or sick to work (bearing in mind I own my own business, I work hard and long hours, and have a family to support). It also significnatly affects my quality of life - if I have pain I can't eat so miss out on a meal with my wife, I rarely feel like going out with friends, I've given up alcohol in case it's a trigger (we used to enjoy a glass or two of wine together), and whenever we go anywhere I need to make sure I have enough med's just in case of an attack. I suppose that the stress of worrying about attacks could, in fact, set them off.
Put simply, I've had enough of living like this. And I've got no idea what I can do about it.
I would really appreciate any suggestions that anyone can share!
Thanks for listening and it's nice to meet you all.