Hi there! My name is Rick, but I think most of you knew that already. I’ve been asked to share my fibro story with you through the Ravyn’s Doll Awareness Campaign developed by Brandi Clevinger and Melissa Swanson of the International Support Fibromyalgia Network. It’s taken me some time to get it done, but here it is. (Sorry Ladies) #RavynsDoll
For those of you that don’t know, I am a single father to an incredible young man…and I have fibromyalgia.
How does fibromyalgia affect my life?
I’m no longer able to do many of the things I used to do with ease. Pain and fatigue are the symptoms I struggle with the most. Simple everyday tasks take more energy and leave me feeling worn out, meaning that I must take breaks more often making these tasks take much longer to do that normal. It has caused several losses in my life as well like my job, social interaction with the friends I care about and want to spend time with, and to a degree it also limits what activities I can participate in with my family. One good thing it has brought me is a better understanding of chronic pain and empathy towards those that are experiencing similar situations.
It is most difficult for me when I would love to be able to take my some someplace, but I am either in pain or lack the energy to do so. I know my son understands, but I know at times he can also become disappointed because he would really be looking forward to doing some of these things with me. He’s not disappointed with me, just with the circumstances. He would love nothing more than for me to get better.
What helps me cope with fibromyalgia?
Medication help some, but not much. I try to walk at least a mile throughout the day, but there are day where I fall short on that goal. What I find most helpful is knowing that I’m not alone in this battle. I’ve met or communicate with others that have fibro or similar conditions, some of which are further along in finding what helps limit flare-ups, reduce pain, and coping with the mental aspect of dealing with a condition that can be quite unpredictable. Trying to be involved in the community helps as well, but there are still may times I am struggling with just getting through the day. Reading some books (when I’m not feeling foggy) & trying to make my patio into another living space also helps a great deal.
What would I like to have changed in the medical fields regarding fibromyalgia?
It took nearly 10 years to reach the diagnosis. That is too long to be dismissed by doctors when you are struggling with pain every day. I would love it if there was some way to know what doctors really do have up-to-date information regarding the condition and treatments. I didn’t go to a different doctor on a consistent basis mainly because I didn’t feel like doctors really listened. It wasn’t until a couple of years ago when I actually found a doctor that did listen. She wasn’t a specialist, but when she reviewed my records and the list of complaints I’ve had over the past 10 years she started running the tests needed to rule out other conditions that share similar symptoms. That was approaching 3 years ago. Since then I have been to a rhuematologist, a pain management specialist, and a chiropractor/physical therapist with minimal success in controlling my symptoms. Sometimes it felt like they were listening, and other times not so much.
I guess continued education regarding invisible illnesses would be a priority for me. Getting doctors to understand that many chronic pain patients aren’t there for drugs, but rather to find out what is going on with their body and the most effective way to cope with our condition. While doctors may know more about how the body works, but we know how our bodies truly feels