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.

Fibro Hell: Part 1 Thursday, June 26, 2008

The Beginning of the Battle

For years, I had difficulties with migraine and low back pain. I was 13 when I had my first migraine headache. My mom had decided to take me, my siblings, and my best friend to Raging Waters. We were all so excited to be going, but as we were standing in line, waiting for the park to open, I began seeing these odd spots in front of my eyes. It was almost a blurring of my vision, except that the blurry spots would block out my vision and they were dark. I also started to feel nauseas, and after a little while, my head started to pound and throb. I ended up spending the day laying in the dark of the first aid office, taking Tylenol, and just waiting for the hellish day to end. Meanwhile, my friend and my family enjoyed the park. I had no idea what was wrong with me, nor did my mother. But from time to time after that, I would occasionally come down with these really odd headaches. It wasn’t until years later after doing some research that I was able to identify these horrid headaches as migraines. Hooray. I’m a migraine sufferer.

The migraines by themselves have been hellish enough. At first, I would only get them occasionally. As the years have gone by, however, they have only gotten worse. Around the time of our wedding, they started getting really bad. I was getting several a week, which, of course, interfered with me being able to work. I believe I was originally prescribed Imitrex pills, although I did take Vicodin on my own a couple of times (left-overs from wisdom teeth removal). For a while, the Imitrex worked. Then it didn’t. I was then switched to the Imitrex injections, which kind of worked. They eventually would get rid of the migraine (or maybe it would just go away on its own), but first, it would make me feel 20x worse. Eventually, that also stopped working completely. Through the years, I have tried so many medications, all to no avail. I have tried Zomig, Midrin, Maxalt, Amitriptyline, Nortriptyline, Axert, Frova, Migranal, etc. I have tried so many different medications, including antidepressants and Toprol, all to no avail. My triggers are numerous: hormonal changes, weather changes, certain foods, bright sunlight in my eyes, lack of sleep, lack of food, etc. Trying to keep track of all those triggers becomes overwhelming. And I am not completely sure I have been able to identify all food triggers or allergies as of yet, either.

In September of 1996, I was in a car accident where I was hit from the side and my car was totaled. There was no acute injury to me, and I did not go to the hospital that day. However, over the next few days, I did start to experience stiffness and pain in my back and neck. I went to see a doctor, who then sent me to physical therapy, which had no effect. I then ended up going to see a chiropractor for a few months, until he told me that he could not do anything else for me. What a waste. Since then, I’ve seen numerous doctors and chiropractors over the years regarding the pain in my back and neck. However, for most of that time, the pain has only really acted up around my period or when I was overstressed. When it did act up, though, it was bad. I was never really able to get that fully under control either.

At the beginning of 2005, I was promoted to a new position at work, with a lot more responsibility and a lot more stress. I handled it well at first, but as I took on more clients and responsibility, my working hours grew to be anywhere from 10 to 14 hours per day, with some Saturdays. I was also attending school online, which required me to sit in front of a computer at home for a few more hours each night and a large portion of the weekends. This meant I was sitting in front of a computer for the majority of my days, with sleep being the main alternative. I have never really enjoyed exercise, so forcing myself to keep that as an important part of my life just didn’t happen. In May of 2005, my back, especially my lower back, began to hurt almost constantly. Towards the end of the month, I went on vacation to Hawaii, and what I remember most of all is the pain that I experienced the entire time. The flight irritated my back so much that I could not do anything that first day, other than get a massage. I was able to do some activities after that, but the pain shadowed everything.

After I got back from Hawaii, I went to see my doctor, who then referred me to see a Physical Medicine doctor. The doctor took x-rays, didn’t find anything, prescribed me muscle relaxants and pain medication, eventually gave me trigger-point muscle injections, all to no avail. The medications helped take the edge off, but the pain was still incredible. Eventually, it got to the point that between the pain and the migraines, I could no longer make it to work. I ended up on medical leave for months. The entire time I worked in this position, there was a lot, and I mean A LOT, of stress and change going on in the department. The entire department was overworked and underpaid and nearing burn-out. When I tried to return to medical leave, I tried to explain to my new manager that I needed to have less clients and less hours, at least until I could get back into the swing of things. I was basically told that she couldn’t do that, and I eventually ended up resigning from the company. I was sick, hurting, and just couldn’t deal with that. Because I resigned, I was able to change my health insurance from the Kaiser insurance I had with the company to the Blue Cross insurance offered by my husband’s company. This allowed me to start looking for new doctors.

 

Coming soon: Fibro Hell: Part 2, Multitudes of Doctors.