Fibromyalgia & Narcotic Bowel Syndrome Tuesday, August 26, 2008

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…

The Curse Sunday, June 29, 2008

I feel that fibromyalgia is a definite curse. I know some people who have fibromyalgia don’t necessarily feel it as severely as I do, or maybe don’t have as many other disorders going on at the same time. I don’t know. But I actually find it discouraging to hear from people who say they had it and exercised and got all better. Sorry, that one just isn’t going to work for me.

One of the worst parts of this whole mess is the stomach issues I have developed. I don’t know if it’s due to my medications or if it’s actually another disorder or condition, but it is so hard to eat. People don’t understand how depressing it is to know that you NEED to eat, for the sake of your health and body (and for fear of disappearing otherwise), but are just physically unable to eat. The nausea is horrible. I take nausea medication usually given to chemo patients, and even that is really not enough. It’s extremely stressful to try to force food down your throat every hour or couple hours throughout the day.

I have an extremely difficult time trying to get enough calories into my body. I’ve been doing research and based on my current weight (about 98-100 pounds, which is extremely scary to me), to keep from going into starvation mode, I need about 1200 calories. To maintain my current weight, I need about 1500 calories. To gain a pound a week, I need to consume over 2000 calories. It’s really a struggle just to hit 1000 calories. I’m finding that in order to hit the 1500, I need to be eating almost every hour. I’m trying really hard not to eat junk food, but instead to eat foods that will actually nourish  my body. I know at this point that I’m probably malnourished. So I want to eat only those foods that will most effectively nourish my body. Unfortunately, eating healthy foods makes it even harder to meet that 1500 calories (or the 2000, which is what I really need). Fruits and vegetables just don’t have that many calories. I’m not that big of a meat eater. And I’ve been having difficulty with breads and cereals for months. Plus, I really want to avoid ANYTHING with High Fructose Corn Syrup, because that stuff is the devil.

I truly believe that most of us have been poisoning our bodies for years, if not our entire lives. I don’t know about the rest of you, but I grew up eating stuff from boxes, cans, bags. Of course, my mom is a pretty good cook, and she did make meat and vegetables all the time, but our breakfast on the weekdays tended to consist of sugary cereals. Lunches were typically sandwhiches with chips or something. Maybe an apple. And side dishes at dinner were typically out of the box. After I moved out and got married, my diet went downhill fast. Between work and school, it can be so difficult to eat healthy. In comes junk food, fast food, anything in boxes with “Just add water,” on the side. All of that stuff that contributes to the downfall of one’s health.

Once you get to the point where everything you’ve been poisoning your body with starts to affect you, its extremely hard to get back. And I’m really at an extremely low point. Because I’ve had problems eating for so long and am now malnourished, my energy levels are SO low. My muscles are weak. It’s extremely hard to function. I hate this. I want to feel good again. I want to be able to eat a normal meal. I want to feel human again.