Dealing with the day to day
Days like today I truly truly wish I could have had just a fleeting moment like that. Unfortunately today was one of those LMA days for those that know the purple pain scale. Yet I wasn't exactly able to tell anyone to leave me alone. Instead I had to work all damn day. Yeah. Seriously I could have died this morning, at least that's the way that it felt to me. I know many of you probably think that I am being melodramatic, but if you could live one day in the life of a #spoonie patient you would possibly have a better understanding of the type of pain i am talking about.
I've tried to explain fibro so many times, and haven't done a very good job of it to be honest. I'm studying everything I can get my eyes and hands on though, so hopefully I'll one day be able to whip out an answer with barely any hesitation. Here is a really good explanation I found on another fibromites blog though and I'm going to share it with you;
This can be found on Felicia Fibro's page at www.feliciafibro.com
I remember the first time a doctor mentioned the word fibromyalgia to me. That doctor admittedly did not know too much about the condition, but he knew enough to think I might have it. I had never heard of fibromyalgia and neither had any of my family or friends. For years afterward I would mention having it and the response would always be, “What is that?” Nowadays when I mention it I usually get a response of, “I know someone who has that.” From further discussions with those who know someone with fibromyalgia I have found that most don’t really know what Fibromyalgia is or what the person they know experiences.
So, how should we explain fibromyalgia to others? I usually start off by asking the person I’m talking to if they know the all-over body aching with completely no energy feeling they have when they have the flu. When they say they do I tell them that having fibromyalgia feels like that every single day, except add in shooting shocks of pain and sometimes extreme dull, radiating pain. Sometimes I mention that the shooting shocks of pain feel the same as when a dentist hits a nerve while working in your mouth. I hope that by explaining what fibromyalgia feels like the person will have something to relate the information I’m giving them to without being confused with medical terms and processes they’ve never heard of before. If I continue on about mental aspects I also say there is this thing called Fibro Fog which makes it hard to recall words and keep trains of thought. I usually don’t go into further details unless the person asks for them. I know this is not an all-encompassing description, but it covers a lot in basic terms that I hope they will remember. I hope my explanation will raise awareness and enhance their relationship with those who have fibromyalgia – including me!
There are two good analogies that explain the amount of pressure that can cause pain in people with fibromyalgia. They both explain what 4 kg of pressure, the amount doctors apply to pressure points when diagnosing fibromyalgia, feels like. The first analogy is the amount of pressure used to close a Ziploc bag. The second analogy is the amount of pressure that will cause your nail to turn white when you push your thumb and another finger together.
Lynne Matallana, the founder and president of the National Fibromyalgia Association discusses how to explain fibromyalgia in this video.
What is your approach to explaining fibromyalgia to others?
I couldn't say it better myself. Anyways I'm done for the night.....but I'll be blogging again soon.