After being diagnosed with Fibromyalgia a couple years ago, I have been on a ton of different medications, with the most recent narcotic pain medications being Oxycontin and then Methadone. Throughout this whole ordeal, I have developed stomach issues, which have continually gotten worse and worse. I have been taking Zofran for nausea and vomiting for a long time now, and it just does not work effectively. I am nauseas all the time, puke often, deal with constipation on an almost daily basis, and have a lot of abdominal pain all the time.
I have been trying to figure out what is going on with my stomach. I have lost so much weight, it’s absolutely ridiculous. I am 5’6” and a healthy weight for my height and frame is around 130 pounds. At this point, I am now down to 92 pounds, which is scary. I can see and feel all of my bones, which makes it very uncomfortable to do ordinary things, like sitting on a hard surface.
I have had this feeling for a very long time that my medications have actually been making me worse. I did get this semi-confirmed when I went to see a gastroenterologist a couple of weeks ago. After reviewing my symptoms and history and feeling my stomach, his gut instinct is that I have developed what is called Narcotic Bowel Syndrome. Apparently, this is a reaction to narcotic painkillers, which causes the digestive system to be completely out of whack, causing the symptoms I am experiencing. He did schedule me for an endoscopy, just to make sure he’s not missing anything, but thought it would probably be normal.
I went on Friday for the endoscopy. That was an interesting experience, since they do it under anesthesia. I swear, that was the best sleep I’ve gotten in a while! But of course, the endoscopy was essentially normal. They did see some redness in the beginning of the small intestine, but thought it was probably just from rubbing together. I believe they took a biopsy, but chances are very good that it will also be normal.
This means my only option is to go off of my narcotic pain medication, which is fine, because it is not effective anyway. However, withdrawals are extremely tough on me, so I had to switch to a liquid Methadone, so that I could wean down on a much slower schedule, hopefully eliminating any withdrawal symptoms.
Anyway, after learning about this Narcotic Bowel Syndrome thing, I tried to do some research. Unfortunately, it seems like perhaps this is a syndrome they are still discovering, because I really could not find much about it. Most of the links I found were all to the same clinical study on this condition, which really did not give me very much information. I also mentioned this to my pain management doctor, and he had not even heard of it!
Oh well. Normalcy is apparently my hell, because even though I hurt all over, am extremely weak and tired, can barely eat 1000 calories a day, can’t stop losing weight, am dizzy and lightheaded most of the time, can’t sleep, and get severe migraines and tension headaches several times a week, ALL OF MY TESTS ARE NORMAL! Or close enough to normal apparently. But no matter what I do, no matter how closely I follow my doctors’ instructions, nothing gets better. I continually get worse. I don’t know. Maybe its not fibromyalgia. Maybe its something else that they just haven’t discovered yet. I do want to go see an endocrinologist to have my thyroid checked by a specialist. But that will most likely be normal as well. I wonder if there are any other conditions that are misdiagnosed as fibromyalgia. More research, I suppose…
