Burning that NEVER goes away now?

Hi, I'm around on many different forums here (I have a host of health problems and conditions-- some of which seem autoimmune-related, which have not been diagnosed yet because I have no insurance).

Anyway... I am diagnosed with Fibromyalgia, I am thought to have IBD (Ulcerative Colitis or Crohn's), Sjogren's Syndrome, possibly some others.. or maybe NONE of those! Who knows!! BUT one thing is for sure... I have very serious gastrointestinal and bowel issues, and I've also had GERD for years.

My question to anyone here is: Does anyone know anything about burning that NEVER goes away? It used to come and go, of course, as the burning from GERD usually does. But now it stays. It's stayed constant for about 5 months now, maybe longer. (I have no insurance right now)!!!!! It seems to lie right in-between the bottom of the ribs-- right underneath my breasts and right around where the esophagus meets the stomach. And it seems to spread upward sometimes. It burns more when I breathe in. It also burns more when I haven't eaten for a while. Sometimes it prohibits me from sleeping, or wakes me up out of sleep.

Nothing OTC has ever helped, although zantac can help a real teeny tiny bit.

I stay away from all of the no-no foods, don't take any medications or drink coffee, etc.

Why does the heartburn never go away now? Has anyone ever had experiences with this?

Thank you in advance.

Eden

Sounds like erosion of the lining at the junction between the esophagus and the stomach. Once the acid burns through the protective lining of the esophagus, it starts to work on the unprotected tissue underneath, which has pain sensors telling you it's being damaged. So it's kind of like having a raw wound that is never allowed to heal because the acid keeps damaging it faster than the body can heal the damage. This happens when your LES valve stops working and stays open all the time. One sign of this is if the pain increases when you take a deep breath, since as the lungs expand, it presses on the wound just like poking your finger on a cut makes it hurt more.

A stong PPI medication to reduce the acidity of the stomach acid is usually the first line of attack against this. It won't fix the LES valve, but will weaken the stomach acid to reduce the pain over time.

The dosage is usually something you have to experiment with. I tend to put the dosage into three categories. First is the dosage you need to allow the wound to heal, which reduces the strength of the stomach acid enough that the body can repair damage faster than the acid causes new damage. At this high dose, the wound can slowly heal over a several months and the constant pain will slowly subside.

Once it has healed, you can reduce to a maintenance dosage, where the body will heal damage at about the same rate as new damage occurs.

Then there is the losing battle dosage, where you aren't taking enough PPI, and the wound slowly gets worse over time.

For me I take generic timed release Lansoprazole in 15 mg capsules. A healing dose for me is three capsules a day. The losing battle dosage is two capsules a day. The maintenance dosage is somewhere in between, so I usually take three on one day, then two the next day, and alternate. When I get a flare up of pain, I take three a day until the pain starts to reduce. I don't like to take three a day since I get some side effects, like dry mouth, etc., but you have to make tradeoffs sometimes.

You also need to do all the usual GERD lifestyle changes too or all the PPI medication in the world won't help.

I don't know about some of the other comments. People with Non-Erosive Reflux Disease generally have more symptoms, and symptoms that do not respond as well to PPI's. The non-erosion part means that nothing is being eroded. There can be a number of causes, from true acid reflux to functional heartburn to hypersensitivity. I am in the same boat my friend.

@ Speden...I hear you, but we do what we can with what we know.