Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?
Because of the commercials, people think if we just take the magic "pill" we feel fine. That is so far from the truth. There is NO magic pill! and the pain is EVERY DAY 24/7. The process to diagnosis is long and it is achieved by eliminating other issues. Like I had EEG on legs and arms to determine if I had nerve damage.that was causing pain, nope. Fibro is in the neurotransmitters and will not show on a test. But the pain remains.
Has any one told you that "you don't look sick?"
I had a friend of a friend, and I responded with, imagine the worst flu you have ever had, now have that All the time, especially the fatigue.It is the best way I know how to help others understand as we have all had the terrible achy and I can't move type of flu. I was then told to get the pills on TV and my response was, I do. There is no CURE, I explained how our fight or flight response does not shut off. He said, "Hm" and walked away. Later I was frustrated I had not explained it all better, but eventually I realized, it did not matter, because some people just do not want to understand it.
Tell us, who is your biggest support system while coping with fibromyalgia?
It always has been my husband. Because he saw me when it all began and getting through the day hour by hour was the only way. I could not get out of bed or walk. He encouraged becoming my own advocate and getting educated the best I could. I am very very lucky he understands and has remained by my side. He will help cook dinner on my bad days and now understands I have to pace myself and lay down and rest every day.