I spent an incredibly informative half hour with one of our psychologists this afternoon. See, I was diagnosed with Fibromyalgia in 1997. To date, I still don’t believe that I have a disease.
I feel guilt. I believe that my symptoms are because of aging and bad life habits. I can’t be treated with any of the currently popular drugs for this disease, so I’ve tended to try to ignore it.
And then I talked with this woman, a sufferer herself of Fibro, and someone who has done an incredible amount of research into the disease. I thought I would share some of what I learned so that sufferers and family members will possibly become more informed about this mysterious, but very real, disease.
First of all – Fibro has many of the same traits as MS. It is a neurological disease in which the pain response is greatly enhanced due to stress and exhaustion.
Like MS, one of the primary symptoms in Fibro is what’s called “Fibro-fog”. That’s an attentional problem in which we lose word and memory recall. (Until today I truly thought I was getting senile, because I’ll reach for a word or memory and it’s just not available to me.)
One thing most of us who have Fibro suffer from is overwhelming guilt. “I should be able to push through this.” “There’s so much work to do and I can’t drag myself out of bed.” “What must people think of me?”
Caring, but uninformed family members contribute to the guilt by insisting that the sufferer just needs more exercise….that it’s probably just a little depression…that they’ll forget the pain if they just stay busy, that they’re really suffering from self-pity and laziness.
For those who can handle the side effects of treatment options, the typical course is to suppress the nervous system at night since exhaustion levels are so critical in controlling the pain. Sleep is a healer for Fibro. Then in the morning, (the absolute worst times for Fibro people) many of us take some form of a stimulant so that we are fully awake and our brains are firing at a good rate. (I can’t take the stimulants, but learned today that the B vitamins will help with energy and concentration.)
Self care and balance are crucial for Fibro patients. During what are known as ‘flare-ups’…times when the pain is like a burning fire throughout the body and muscles just don’t want to work…patients must rest….WITHOUT GUILT. This can be very disturbing for family members, who are burdened with the chores and tasks that the patient “should” be doing.
In my case, since I’ve refused to accept this disease as part of who I am, my tendency is to push through for as long as I can, and then crash and have to spend a day or two in bed. Guilt! Guilt! Guilt! I only know I’m at the end of my very painful rope when I can no longer hold back the tears.
So, I’m about to travel (trudge?) a new path. I’m going to work to take care of myself, and make whatever life changes are needed, without guilt, so that I can continue in my job and enjoy the good moments in my life.
Thanks for reading, and if you’re a friend or family member, thanks for caring enough to accept that I have Fibromyalgia, which means that life for me is going to be organized around pain, stress and exhaustion levels.
Peace to all!
Pat
