Fibro Zuly

My Fibro Story

When I was trying to figure out what was wrong with me, reading other people's stories helped me enormously. So, here's my contribution. I hope that reading what I went through will help you the way other people helped me. If you have questions, please contact me via email: [email protected]

My Fibro Medications and Supplements
updated 29 January 2004--

These are the medications I currently take to aid my fibromyalgia symptoms. Disclaimer: I am not a medical professional. I offer this list only as a resource for possible discussion with your certified healthcare provider.

  • Elavil: 30mg at night. After taking trazodone for a year and the doxepin for about six months, I'm now on Elavil, and it's working incredibly well for me. Many people who take Elavil gain weight while on it; I have not -- probably because of the migraine preventatives I take.
  • Lamictal: 100 mg/day, divided. I previously took Topamax for migraine prevention. I was on it for a year, but then developed a kidney stone, so now I take Lamictal. I've only been on it for about three weeks, but it IS helping.
  • Glucosamine: 1000mg per day, half in the morning, half at night. I started taking this when I was diagnosed with arthritis in my right knee. The pain and inflammation I was getting have been significantly reduced since I started taking it. Note, I do not take the combination Glucosamine with Chondroitin. My doctor told me that the research doesn't show that the chondroitin makes any sort of significant difference, and to save my money.
  • Calcium: 1000mg per day. Because women don't get enough calcium, and osteoporosis on top of fibro when I'm 70 is not my idea of fun.
  • Darvocet: Pain killer. I use it regularly for fibro pain and headaches. Darvocet only marginally helps fibro pain; it takes the edge off, but that's usually about it. It's certainly not a substitute for exercise and good sleep.
  • Ambien: 5 or 10mg as needed for insomnia. Ambien has been my life-saver. Whenever I can't sleep, I take it and get a good 6-8 hours sleep. Ambien helps me fall asleep quickly, and with no hangover-type effects. The Ambien is also helpful when I'm very anxious and can't get my brain to calm down enough for sleep.

My Fibro Treatment Plan

To treat my fibromyalgia, I take medications, stay active, get plenty of rest and try to track myself so I can control my symptoms. I'm learning what my triggers are (for example, my symptoms always get worse when I have my period).

Exercise is very important for me, even if it's only 10 or 20 minutes every couple of days. Remember, fibromyalgia is your body's reaction to stress. You can help your symptoms by workng to reduce your stress or, at the very least, learning how to control it through relaxation exercises, meditation, and/or recreation. Find things you love to do, and make time to do them. Ask for help from family and friends. And learn your limitations. For example, I was pushing myself really hard to get to the gym three times a week to workout. While I was keeping my pain levels very low, I also found that my fatigue levels were very high from day to day. In addition, I was running around on Saturdays doing errands, so I wasn't giving myself adequate rest through the week. When I was at the gym, the tv was always on either the news, which stressed me out, or something like Ricki Lake or Judge Judy, which also stressed me out. Something had to give.

About a month ago I stopped going to the gym for my workout. I took two weeks off to rest, then I started hiking in some of the local parks. I split my walk into two sections, taking some time to rest inbetween, usually writing in my journal, which is relaxing and helps my overall stress level. I actually look forward to getting my exercise, instead of the sometimes overwhelming stress I had making sure I got a machine at the gym, etc.

When I am at home, I use a combination of resistance bands, balance ball, a body bar, and some yoga, using props. Having this equipment at home makes it easier for me to stay active, even when I'm tired. A couple of simple yoga poses always helps me keep the stress level and pain level down. If you're interested in starting a yoga program, I recommend Gentle Yoga for Beginners. When I first started doing yoga several years ago, I found it very easy to follow, and filled with poses that were challenging, but not difficult, and perhaps most importantly, made me feel good. The Relaxation pose and meditative breathing at the end are also wonderful for reducing stress.

Also, keep in mind that some of the errands you run count as exercise. For example, on the day I do my grocery shopping, I don't do any other exercise except for some stretching. Walking around the grocery store is enough. Don't add more stress to yourself. Start simply. Add as you go. And be proud of the progress you make.

Fibromyalgia Links

There are many websites with fibromyalgia information on them. Unfortunately, I've found that many are not at all helpful. This list, then, contains only sites that I've gone back to over time to view updates or to re-read helpful information. A word about fibro mailing lists: There are a few. A couple are very high volume. When I was first diagnosed, I found them to be a great resource for answering immediate questions. After several months, though, I began to get frustrated with them -- I felt (and this is my own, personal opinion) that many of the participants were mired in a sense of futility, where fibro was the cause of all bad things in there lives. While it is true that having fibro really, really does suck, and while it is true that some people are truly disabled from the fibro, I found that too often people were using the fibro as an excuse for not dealing with some other very serious problems in their lives, such as abusive relationships, depression, obesity, etc. That being said, there are some very helpful people, too, so remember: Don't believe everything you read, temper information with your own experience, remember to use the delete key, and don't rely on the computer for all of your interactions. Go outside every once in awhile.

Devin Starlanyl's Site

This whole site is a great resource, but some of the information focuses more on Chronic Myofascial Pain (a condition that often coexists with fibro) so remember that as your reading.

Fibromyalgia Community

I've found this to be the most helpful of all the fibromyalgia sites.

Weekly Pain Chart (PDF -- requires Adobe Acrobat Reader)

This chart can be helpful when tracking your pain levels to discuss with your health care provider.

Living with FMS

A fellow fibro survivor's website.