You sound exactly like me. Honestly, the Nexium isn't going to help, and no PPI is going to take away the pain. You would be better off cutting down to 20mg twice a day so you don't strain your liver on such high doses. That will block virtually all acid.
I am in the same boat, I am in pain all day, varying intensity and eating certain things or drinking too much fluid is just excruciating. We need help but I think you will be wasting your time with gastroenterologists to be honest. They are usually out of their depth with people like us.
I know this is going to be difficult to hear, but I think this is a psychological issue. Now Im NOT saying this is in your head, or caused by stress. Your pain is very real, I know, I am in the same boat. For 4 years I have resisted accepting this, I have seen all sorts of Drs and gastroenterlogists and tried every supplement imaginable. Nothing worked, or it worked temporarily but the pain just blew through it again. You know when I felt best? When I stopped seeing Drs for a year and just got on with life. I still had pain but over that year it did reduce. But I didn't get fixed because I wasn't having proper treatment for psychological issues.
This is an illness, just like a virus or any other, many people will act or tell you that you just need to relax and de-stress. Well I can tell you that it is no where near as simple as that. I have been doing relaxation therapies for years, and whilst they are tremendously helpful with coping, they wont necessarily cure a psychological disease. Because it is an organic disease, your brain cannot interpret things properly, and the nerves in your esophagus are sending signals to the brain which it reads as PAIN, even when there is no real damage being done.
Many people dont even realise they are suffering major depression or anxiety because the pain comes before a lot of psychological effects. But they need to be treated in the right way, which is by a psychiatrist, with anti-depressents and therapy. Many anti-depressents also have the added bonus of reducing pain. I am on one which does this and it has helped take the edge off it.
It has taken me a very very long time to really believe that my pain is a manifestation of psychological issues, 4 years of suffering, and I am still in bad shape. I only started therapy a few months ago and still dont know whether I've found the right medication for me. I am still very depressed and anxious, but I hold out the hope that because there is nothing physically wrong with me, one day my brain may start functioning correctly and stop thinking everything is painful.
There are a couple of things that make me think I have a psychological issue. The first is that I get pain straight after eating. This is not typical of GERD, which is usually painful 30-180 mins after once the stomach has secreted acid etc. The second is that I have never been woken up from pain in the night. Yet I have woken up with reflux and a few seconds after waking the pain appears and then becomes excruciating. These aren't typical GERD symptoms.
Finally I will say this, even though it may be a psychological issue, you NEED to treat it also as real GERD, in that you should figure out what foods work best for you and what to drink etc. Some supplements can help, and following the usual GERD advice can keep the pain manageable.
GERD, Anxiety, Depression, Chronic Nausea, Chest Pain & IBS
Current medication: Nortriptyline 50mg & Esomeprazole 40mg