Wednesday, July 30, 2014

I am starting a blog to document my research and experiences with trying to find a treatment for my daughter with fibromyalgia. This has been a roller coaster of an experience. The journey began in the Fall of 2013 when Lily was sick every 2 weeks at least and then in February became so sick that school was no longer an option. She was in a lot of pain in her chest which we first thought was asthma. Now we realize that instead it was chest wall pain that made deep breathing very difficult. Lily has not slept well, deep sleep since September of 2013. Her symptoms vary and the pain moves around her body sometimes minute by minute. She almost always has pain in her ribcage in the area of her spleen. I have come to believe that that is Costochondritis and Tietze's Syndrome, not uncommon for FMS sufferers. She has frequent nausea which we can usually control by limiting or completely cutting out gluten. Her nerve sensitivity is on hyperdrive! A light touch produces either a tickle or pain. Many times her clothes cause her pain. She also has developed an extreme sensitivity to smell, sound and light. All the research I have done has lead me to believe that this syndrome has been in the works for a while now. Her "growing pains" that did not precede growth, her difficulty falling and staying asleep- progressively getting worse, her sensory issues, etc. I think were all precursors to this full blown manifestation of FMS. So in this blog, I am going to keep track of all that we are doing to try to help her and also attach links of useful websites. I feel like I am doing all this time-consuming work and it would be nice to share!  The hardest part of Fibro though is that every person has it manifest differently and is helped or not helped by different treatments. Oh yeah, and seeing your kid not be able to function to the level she used to and be in pain all the time. That is really difficult! Here's to a successful treatment plan!!