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I’m a married 31 year-old who has been diagnosed with fibromylagia for 12 years. I am on a quest to raise awareness and help others by sharing information and staying positive. Read more
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Arthritis Foundation Conference

Last month I attended a half-day conference about arthritis and chronic illness, put on by the Arthritis Foundation. Before the event got started there were information booths covering everything from gout to magazines. Dr. Stanford Peng started off the presentations by discussing arthritis research, in great detail. He covered the types of arthritis, medicines and many research statistics about treatments. In closing, he stated the following as the current “issues/needs for arthritis:

  • Current therapies are realistically only about 50% effective, and efficacy is poorly predicted
  • Several treatment options exist with no clear medical rationale for prioritization
  • Treatment of early and/or residual disease is important, but often difficult to assess definitively
  • Side effect risks, especially immune suppression, remain concerning”

He noted the following advances in 2011:

  • Some difficulties with effectiveness of drugs may be dose-related (pharmacokinetic) and therefore surmountable
  • Assessment of disease activity is improved by novel radiographic techniques (e.g. ultrasound)
  • Some drug combinations safely improve effectiveness”

After a short break a physical therapist gave a brief presentation on how physical therapists can help and the proper postures for standing and sitting at a desk. Dr. Steve Overman spoke next and much of his presentation discussed ideas from a book he co-wrote with his patient who has fibromyalgia, You Don’t Look Sick: Living Well With Invisible Chronic Illness. (After I read his book I will share a review) He pointed out that, “‘there is no cure’ does not mean that you cannot be well.” That is something that I whole-heartedly agree with. One of the most important focuses of what he spoke about are the “four phases to chronic, invisible illness:

  1. GETTING SICK: includes the crisis of the onset of illness and a person’s fear of the unkown. A time to diagnose, find treatments that work, find hope, and help you let go of fear.
  2. BEING SICK: requires treating the patient so that inflammation and pain are controlled. The physician empathizes with the patient’s natural feelings of frustration, anger, resentment, and loss. A time to stabilize medications, improve your home program, and increase social activities.
  3. ACCEPTANCE: requires working through the grief that occurs when it becomes clear that “The illness is not going away.” A time for mourning losses. A time to find new ways you can give of your gifts.
  4. LEARNING TO LIVE WELL: occurs when a person finds meaning in her/his illness, and uses this understanding to rejoin and give back to family and society. A time for reducing medications, increasing activities and finding meaning.”

Which phase do you find yourself in?


Listening carefully & taking notes!


Comment from Mamatiara1
Time August 1, 2011 at 1:28 pm

Really interesting post. My physio told me I would not feel better until I had accepted the illness. Unfortunately, I seem to be stuck in this phase. It’s the first time I’ve seen the term “mourning” used in regards to this – but it is exactly how I feel right now. Thanks for sharing. Keep well as you can be x
Mamatiara1 recently posted: LOST FOR WORDS


Felicia Fibro Reply:

I think one of the things that happened for me during acceptance was the realization that although things had changed, deep down I was the same person and that didn’t change. Although I needed to adapt the way I do some things, I hadn’t changed. It was all about finding a new way to be me. Good luck on your journey of acceptance!


Comment from Annie
Time December 22, 2011 at 6:34 am

I think I’m between phase 3 and 4. Although I having difficulty “digesting” the last sentence of #4. I really need the medicines I’m on. I am looking to increase my activities, although I am in a strange 10 month flare (or is it just the way it is?). I’ve limited my activities to what’s most important to me: my family and my church. I do try to keep active through the days, even if I have to push…does that count?….now I’m even more intrigued to read the book!
Annie recently posted: The Christmas Shoes – Based on a book and song by Robert Layton


Felicia Fibro Reply:

Luckily, I think they mean reducing medications without that causing issues.


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