Fibromyalgia, Chronic Fatigue Syndrome

My daughter had been a competitive swimmer since age 6. Throughout that time, she dealt with chronic sinusitis and feelings of complete exhaustion at times, but nothing that she didn’t overcome with a day or two of rest and an antibiotic. Until the fall of 2004! She started 6th grade in mid-August and swimming work-outs in early September. By mid-September, she had a severe sinus infection and but tested negative for Mono. Her symptoms of extreme exhaustion, swollen glands in her neck, sore throat and achiness continued with no improvement through two rounds of antibiotics. During a period of 4 weeks, she went from an active, non-stop 12-year old A student, to a child who was sleeping 15-18 hours a day, constantly felt like she had a bad case of the flu, couldn’t get to sleep or stay asleep at night and who couldn’t attend school or concentrate long enough to complete work at home. By November, her knees, ankles, elbows, chest and back began hurting to the point that she could barely walk at times. She was retested for mono, tested for lyme disease, hepatitis, EBV, JRA, had numerous blood draws, scans, EKG’s, xrays, etc. She saw over 12 doctors and specialists at various locations throughout a 60 mile radius, and still nothing showed up abnormal. Finally in late January 2005, she was diagnosed with Fibromyalgia and CFS. At last a diagnosis, but where did we go from there. The Rhematologist at our local, well-known children’s hospital didn’t want to give her the tradtional meds, because they weren’t proven with children. Her pediatrician wouldn’t excuse any more days of school and told me to “make” her get up and go to school, she told me on two occasions that she just wanted to die because she was so tired of not feeling good and not being able to be a normal kid. We had to do something more than we were doing — which was basically iboprofen, stretching, and heating pads! A family physician who is a client of my husband’s agreed to see her when my husband and I were at an all-time low in dealing with our feelings of helplessness. Some of the trial and error meds helped, some didn’t. If they did help with the pain, it would only help for a couple of weeks, and then loose its effectiveness. Once again, we were all at the end of our rope with any treatment ideas. Massages and chiropractic adjustments gave temporary relief, she was exercising and stretching on a regular basis as prescribed, but still not getting over the “hump” or able to attend school on a regular basis. If she had a good day, it was quickly followed by 4-5 days in bed. She couldn’t walk in the mall without sitting down several times to rest and would choose to stay at home instead of going to a movie or a friend’s house because it was just too much “work”. In early May, I was emailing family and friends with an update on her condition (which wasn’t too positive) and trying to get an Education Plan initiated for 7th grade since she had missed over 60 days of school and on the days she did go, it was from 10AM to 2:30PM, because that was all she could handle before collapsing back into bed. Her 5th grade elementary school teacher offered to tutor her and I thought we were resigned to these limitations for the unforseeable future. I was depressed when reading about other children with Fibromyalgia and CFS and pictured taking care of my daughter like this for a long time after reading their stories and lack of treatment progress. The phone rang early one morning in mid-May and it was her 5th grade teacher who had offered to tutor her. Her husband had met with a woman whose daughter had an almost identical case when she was 12 years old. She is now 20, and had been on the AP treatment for 4 years. The girls had seen the same specialist and faced the same “live with it” attitudes from doctor after doctor. The same day, I called the woman, got the name of the doctor who was treating her daughter, and had an appointment for later that week. The physician was even amazed at the similarities between the two and was extremely optimistic that the AP teatment would work on Kathryn (my daughter) as well. She started on 100mg of minocin every other day and Paxil and Flexeril at night to help her sleep. Within a week, we saw an incredible change. She managed to attend school full time 6 of the last 7 days of May and hasn’t let up since. By June, she was roller blading, riding her bike, walking the dogs, getting up at 7:00 AM in the morning on her own and feeling refreshed from a good night’s sleep, not needing a nap during the day — basically acting like a 12-year-old again! Making a long story short — she has had a couple relapses over the summer, but they lasted a few hours, not several days like in the past. If she feels like she’s over doing it, lying down for a hour or so takes care of the problem. She attended volleyball camp for 3 days, and after coming home and sleeping for 12 hours, didn’t skip a beat! She traveled with our family to attend my son’s baseball games all sumemr, and again, bounced right back after we returned home. She has pain in her knees and now has Osgood Slaughter’s from growing so rapidly, but believe me, the complaints are minimal compared to what I heard from September to May! Her attitude is fantastic and she is excited to begin school next week. She plans to play 7th grade volleyball and then see how she feels at that point before returning to swimming again. Our entire family has grown so much during this ordeal. Obviuosly our priorities have changed with regards to sports, and we are thankful each day that Kathryn has made since an incredible turn-around with the AP. Her doctor recently increased her to 100 mg every day of Minocin (generic). She also takes 30 mg of Paxil and 10mg of Flexeril at bedtime. He added 100mg of Norflex in the morning as well. She takes acidophilis, a multi vitamin and an antioxident on a daily basis. All of this has been an answered prayer and a miracle treatment in our eyes. She keeps reminding me that she is fine, and that I worry too much about her health, but I have finally come to the conclusion that maybe she is on the road back!