News of fibro

Discussion in 'Fibromyalgia Main Forum' started by Sissy123, Apr 22, 2003.

  1. Sissy123

    Sissy123 New Member

    I watched the news from K.C. MO, about 70 miles from my home, and the topic was fibromyalgia. As we know already science has proven that we actually hurt, dont sleep, fatigue,...but they did the MRI's on us and our brains are working different. The doctor said it is like our brains turned up the volume when it comes to pain. At least I am starting hear things on TV about it now. It just seems like we are so "left in the air". I seen the doctor yesterday, a new internal medincine doc, and I ask her if she knew about fibro/cfs, and she told me, yes but there is not cure. I knew that. I felt like once again I was a pain in their hinnies. I get so tired of that, but then again I have thought about it, and what do I expect when there is so little research on it? Anyway, there is a continuation on the news tommorrow at 5:00. There is supposed to be a drug already on the market that may help. I am problably already taking it, but will keep you updated on anything I hear. Could you please do the same? I want to hear everything I can. I have already learned a great deal about it from you all. Have a great day, and a better night. Ha ha...I rarely sleep.
  2. EllenComstock

    EllenComstock New Member

    Yes, I think it is encouraging that we are starting to hear more about FM and CFIDS. Maybe this will help the average person to realize that these are legitimate diseases-not just a throwaway diagnosis or that we are all just a bunch of hypochrondriacs who want people to feel sorry for us. And also this will help spread more awareness of these conditions.

    Keep us informed about anything you hear. Yes, I have heard about a new medication, but can't think of the name of it. I'm thinking that maybe it won't be available yet until maybe the end of this year? I think most of us here are constantly reading and sharing information. That's what makes this message board so great.

    Ellen
  3. layinglow

    layinglow New Member

    Although MRI's and CT's have shown minor brain anomalies, our greatest advances I believe will come through scans such as PET and SPECT.

    I have been concentrating my research, lately on the Central Nervous System, (CNS). I believe that is starting at the top, and that all our symptoms fall under dysregulation of this system. PET and SPECT have shown many areas of the brain and brain stem, that are abnormal, as if injured. I believe this injury takes place when a trigger such as trauma, viral, bacterial...or the many others that we can list at the onset of CFS and FMS.

    The CNS controls all of our body and its systems--which we know due to our symptoms are dysregulated, or dysfunctional. This includes immune systems, adrenals, digestive system, neuroendocrine, cardiovascular, sleep cycles, mood and cognitive dysfunctions, thermal regulation, hormonal regulation, dysautonomia.....
    myalgias and neuralgias occur.

    There are also findings that as in other brain injuries we have EEG slowing. in FM patients the most powerful electrical activity in the brain was inappropriately in the slowest brain waves (i.e., delta, theta and alpha), a condition known as "EEG slowing".

    I believe as the brain becomes more understood with better imaging, and mapping---we will begin to have answers. The fact that PET and SPECT are showing areas of injury, could make them valuable tools in the future for diagnosis on FMS and CFIDS.
    LL