Friday, August 13, 2010

Fibromyalgia Support Group

When I first became ill in 2005 I was so confused and misunderstood. No doctor could tell me what was wrong with me besides depression (yeah, that's all...) and treated me like a mental case for even asking for legal modification to my work schedule in order to keep my job. I was sick and getting sicker and did not quite believe myself, that it was not all in my head, or my pathetic excuse at laziness to avoid having to be an adult and move forward in my life, or some physical manifestation of my myriad of genetic and depressive disorders. So blame and question myself I did. Thank God my husband did not. He believed in me and loved me enough to stand beside me the entire time. The entire mentally-unstable, bitching, moaning, complaining, lashing-out-at-him because there was no-one-else-to time. I know how truly lucky I am. I also know that I would not have made it through if not for his unquestioning love and support. I hear tales of spouses leaving, sick and tired of their sick and tired they vowed to love in sickness and health. As money, work and lifestyle all flush down the rabbit-hole of normalcy into chaos, they bail. Leaving a person already so raw and stripped bare completely alone. Shame on them! Those sins will be answered for, if not in this life than surely in the next.

I searched for support groups, someone to tell me I was not loony, there were others that understood and had been there, were there, for crying out loud! But every attempt, every turned-over stone left me so very alone as no real network ever revealed itself. So I just gave up, and got desperate, and threw my credit-card at any doctor that would promise to make me better, and set out to get over it. This still-unnamed disease that was quickly disintegrating my body into a mush of pain, exhaustion and fear did not hold a promise of any kind of future. I was 28 years-old and had too much to live for and feared my eminent demise if I did not at least try to get better. Better from what, I still did not know. The Fibro & Fatigue Center in Las Vegas was my high-priced saving grace. They diagnosed my virals of CMV, EBV and HHV-6 as responsible for the Chronic Fatigue Syndrome, along with many other infections caused by the breakdown of my central nervous system from the viruses. They understood and had success in treating patients with this condition. They exploited the best of holistic and modern medicine to their advantage and I did recover from the viruses and built my immune system back from the ground-up, keeping it on top of the now-dormant but never-gone viruses. I took a drug that was a major risk, Valcyte. A cancer-causing carcinogenic, it was a powerful anti-viral and no joke. I had to make a decision; was quality of life now worth potentially cutting my life short at the end? Hell yeah it was! And it worked, after two rounds and tons of other drugs and a bunch of other stuff. But by then the Fibromyalgia had settled in, my nerves damaged from such a long journey of untreated infection. And that is where I sit today. Recovered from CFS and managing my Fibromyalgia. My life is not what it was before, but is so much better than what it had been.

If I can offer any words of encouragement to my fellow-Fibro-friends it is to keep searching. Search for the support of those you know and love, search for the friendship of others that understand and are in the trenches with you. Search for doctors and drugs to heal and manage your daily life, work and responsibilities. Search for a way to laugh a little bit every day and DO NOT LET YOURSELF SUCCUMB TO THIS DISEASE! Oh so much easier said than done, I know, but as long as you are living a life, it mine as well be a life worth living.

Thanks for joining,


  1. I really appreciate your comments. You would not believe what I have been diagnosed with since 1975. That is when the symptoms started and eventually made me totaly disabled. I also have a very loving wife and she has stood by me for all these years. I am also blogging my experience on

  2. Thank you Jerry! I just survived 2 strokes at 33! Of course no neurologist will link it to fibro, but I have pancreatitis and SI Joint Dysfunction and have recovered from CFS and all sorts of other maladies. Stay strong and God bless!