Thursday, February 24, 2011

Chronic Fatigue Syndrome And Me

I am frequently asked how I got better, recovered, managed, etc. from Chronic Fatigue Syndrome and Fibromyalgia. Before I launch into a detailed account of my experience I am giving a few disclaimers:
  1. This is my personal experience and what worked for ME specifically. I was under the care of a doctor the entire time. Do not assume the same results for yourself and ALWAYS consult your doctor before beginning or stopping any treatment.
  2. I believe there may be a few different diseases that share symptoms and are bunched under the diagnosis of CFS and FM. I also believe they are separate diseases from each other and subscribe to the "suppressed immune system as the point of entry" school of thought.
  3. I currently consider CFS in remission and FM managed. Unfortunately they don't just "go away", and learning to live at a diminished capacity is a very frustrating experience.
After seeing many doctors, taking a multitude of blood tests and undergoing oodles of scans and imaging I still turned up as healthy as an ox on paper. Most of you have been through this. Yet I was sick and disabled and emotionally spent. I had limped along living half a life while still trying to fulfill my full-time obligations. It about took me under and after I had a complete emotional breakdown and went out on disability I started researching outside the confines of modern medicine. The book From Fatigued To Fantastic was a Godsend to me and opened my eyes to the truth of what was going on with my body. The symptoms he described, the wide breadth of their consequences on my health, oh the reality of what was happening to me was staggering! I was game, I was ready to try all the methods he recommended but needed a doctor to walk this walk with me. I need blood tests and prescriptions and a physician that knew more about this than I did! After a search for one that took my insurance in my area turned up nil I decided to go with The Fibromyalgia & Fatigue Center in Las Vegas. I knew it was going to be expensive. I knew it was horribly inconvenient, for I was living in San Francisco at the time. But I had to go, could not face one more "audition" with a doctor that knew nothing about what was happening to me. I could not listen to one more tell me I was fine. I needed the best of both modern and holistic medicine and that is what they offered.

31 vials of blood! That is what they took on my first visit. My appointment was a full hour long of questions and answers and poking and prodding and inspecting my eyebrows and fingernails, thumping on my reflexes and actually listening to me as I explained my symptoms and the destruction of my life. The first order of business was a bag full of expensive supplements and prescriptions for bio-identical thyroid medication and cortisol to treat my exhausted adrenal glands. They explained what had happened to me. Long-term sleep disturbance + severe Pancreatitis = Depressed immune system + Genetic pre-disposition = an open door for a multitude of viral, bacterial and fungal infections + trigger event = CHRONIC FATIGUE SYNDROME! I spent that first month boosting up my immune system and immediately felt a bit better from the bio-identical thyroid. At my next appointment I learned I had the Human Growth Hormone level of an 86 year old (I was 29), was suffering from a bad fungal infection, had pretty much NO testosterone (my husband was glad to hear that as explanation for our compromised sex life) and all sorts of other problems. I was extremely immune suppressed and spent the next few months building it back up. My regular doctor threw a fit when I told him all about this.

My immune system improved yet my symptoms of fatigue and pain were still extremely debilitating. I was tested for a variety of viral and bacterial infections and switched from Diflucan for the candida to Ketoconozole because what I had was strain-resistant. The tests came back and my infection numbers were off the charts! Viruses are tricky. Once you are exposed you always have it lying dormant in your body. Standard blood tests check for a "new" infection, but I had these viruses for a while and they were not showing up. Its the latent infection that was causing symptoms, the infections were on top of my immune system, and that is what the FFC finally uncovered. I was suffering from Epstein-Barr (EBV), Cytomegalovirus (CMV aka HHV-5), Human Herpes Virus-6 (HHV-6), a bad bacterial infection and I am sure more. I would just have to dig through all my paperwork to be exact and that ain't happenin' today. But don't let the word herpes fool you, none of these are sexually transmitted.

I was started on Valtrex for the viral and Zithromax for the bacterial. OHMYGOD I hurt! I was back at work at this point and could feel the infections and medication battling for control inside my body! HHV-6, a little bugger that inserts itself in the nucleus of the cells and is darn near impossible to get rid of, was a suspected culprit of CFS at this time. Stanford Hospital was running a clinical drug trial on Valcyte as treatment for a CFS subset called Viral Induced Central Nervous System Dysfunction (VICD) and I was evaluated and tested there as well. I did not participate in their clinical trial because I was using Valtrex for cold sores and shingles (HHV-1 and 3. How much HHV can 1 girl have?). However, my doctor at the FFC prescribed it and by the grace of God my insurance paid for it. Then came another Pancreatitis hospitalization, another month on Valcyte, weekly blood tests on my liver and low and behold my immune system jumped on top of those viruses and I had (most of) my energy back! The Stanford drug trial did not turn out the way they had hoped, but when I was tested again my numbers were significantly lower. It had worked for me.

But all was not over in this 7th circle of hell I was for some reason chosen to walk through. HHV-6 infected my central nervous system for so long before I was treated that it left me with good old fashioned Fibromyalgia from nerve damage as a friendly reminder that this was far from over. That took another few years to get under control and still plagues me to this day. I had 2 strokes at the end of July last year and the treatment has sent Fibro into a tailspin! So I am working on getting back to "managed". I have found if I respect my 5 pointed star of health; sleep, diet, exercise, stress management an hormonal balance, Fibro is weak. If I slack off, Fibro is strong. So the journey is never-ending. This is my story. Each and every one of you out there have a story to tell too. Keep searching for answers, educating yourself, seeking treatment from supportive doctors and believing they will one day find the source of our pain, and then find a way to treat it. If I can share any wisdom gleaned from this experience it is to take yourself seriously and not push through or power it out. I firmly believe if I had realized the gravity in the beginning and had gotten off the hamster wheel of life I would have saved myself years of pain and anguish. Your symptoms are real. Find a doctor that believes that and will go the distance with you. And may God bless you on your journey.

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  1. So do you credit the FFC with feeling better? My husband and I have debated trying to go to the Vegas center if my Rhuemy can't get me under control in the next year.

  2. I went for years and years from doctor to doctor and I could not get anyone to tell me why I was in such pain everyday. Test after test. I even had one older doctor tell me it was in my head. I found a blog one day when I was laid up in bed with my laptop(couldn't even stand on my feet) pointed me to towards Herbalife products. You know how you get to the point of "I'll try anything", so I found a site ordered their basic package it was $99.00 for a month's supply.Shake,tablets and tea in the morning and lunch, then an ordinary dinner.....its now been four months I AM pain free and have so much energy, I'm 56 and feel like I'm 26. I challenge everyone with this dreadful disease to at least try it for a month it has changed my quality of life. I can give you the site - and I had to use passcode to get in which is "liftoff" don't know if it will work for anyone else...I know we are not all the same but even it helps a little I think $100.00/month is nothing compared to all the drugs I was taking. I really don't take anything else now. I hope I can help someone get relief by telling my story