I thought it would be interesting and inspiring for us to read each others' letters to Montel Williams.

For those of you who have not written yet, PLEASE, PLEASE, take just a minute and write as long of short a letter as you would like about your personal story. No letter is bad. You are simply telling it like it is.

This was Melinda's idea and I think it was brilliant. Let's all remember to thank her, and I want to thank everyone who participated.

Here's mine:


Dear Mr. Williams, 11/23/07

Today is a moderately good day for me. My pain level is about 6 out of 10 and Im not too fatigued. The trigger points and myofacial pain in my neck, back, and hips are very prominent and painful to the touch. Its important for me to try to keep my stress level down or it could cause a flare. A flare feels like the worst flu you can imagine and normally last anywhere from 1 to 5days. Some flares lasts for weeks or months. Not too much fun. I was fortunate that I slept 6 hours last night with only 2 interruptions, and I didnt have as much muscle twitching as I normally do. Sometimes I dont sleep more than 2-hour blocks. No one has hugged me yet so Im not sure how much being touched will hurt. The tender points are always painful but my family knows not to touch me there. All of my 5 different meds have been taken for the morning. I need to eat something now to take my supplements. Then there is no more medicine until dinnertime, and then bedtime. Its important for me to write things down since my memory doesnt function as well as it should. Im having trouble concentrating and getting out the words that I know in my head; and I do have to laugh at myself when I repeatedly get halfway through a comment and am stopped dead in my tracks because Ive totally forgotten what I was talking about. After dealing with all of this for so long, my family laughs at it too. Its not so easy for any of us to laugh at the other symptoms, especially when my pain is a 9 or 10.

Youre probably wondering what could possibly be wrong with me to have this combination of complaints. For longer than I care to remember, I have been suffering from Fibromyalgia. Some of you have heard of this disease while others have not. Fibromyalgia is a central nervous system disorder that affects how I feel pain. A stimulus that a normal person would think nothing of is terribly painful for me. Because of the complex balance of neurochemicals that are off balance, my brain does not get enough seratonin so I suffer from depression. Seratonin also helps to control pain. Too little seratonin, more pain. A chemical called Substance P is present in abundance in my spinal fluid. This chemical also determines how much pain I feel. Too much substance P, more pain. If I could sleep better, my pain, fatigue, and muscle weakness would certainly be much better. Sleep, in particular Delta sleep, is the restorative phase where muscles are repaired, etc. Since I rarely make it to delta sleep, the microtears, etc that occur, do not have the ability to heal, therefore the muscle damage just builds upon itself, causing more and more pain, fatigue and dysfunction. Scientists are not exactly sure what causes the brain fog, or fibro fog, as we call it.

Recent studies at the University of Michigan, show distinct differences in SMRI scans of the brains of Fibromyalgia sufferers and normal people. These same brain scans also illustrate differences in pain perception between the two groups. People without Fibromyalgia have light pressure placed upon their thumb. The brain scan shows no stimulation of the pain centers. Next more pressure is applied and pain centers light up on the scan. When the same procedure is applied to Fibromyalgia patients, their scans light up after light pressure, demonstrating that this group is definitely feeling the pressure as pain. This experiment has scientifically proven that Fibromyalgia is a real illness and not all in our heads, as many doctors today still believe.

I have been suffering from this horrible disease for over ten years, Fortunately, I have had excellent doctors to work with but many people do not have this access. I have tried every medication and alternative treatment available and am still suffering. I recently joined an online support group called Daily Strength. I was leary at first because the last thing I needed was to listen to a bunch of whiny people. When I found DS though, I was pleasantly surprised to see a good balance of venting, humor, advice, light conversation, posts asking questions, and lots of empathy and support from members. After three weeks of visiting this site, I have made many good friends and feel emotionally stronger and more empowered to work for a cure.

Thank you for listening to my story, which is the same story of six million other people just in the United States. Research is being done but not nearly enough. Now that you know how we suffer, I hope that you will spread the word to friends, family, co-workers, congressmen, etc. The more that people know about us, the more research will be done to help us, and the closer we will be to a cure.


Sincerely,

Janet L. Reutcke