By, Jennifer Miles
The last several years, my journey reminds me of much like being handed a life sentence in a prison and you did absolutely nothing to be given such a harsh punishment! When people ask me what it’s like to live with Fibromyalgia this is exactly how I describe it. I started to show symptoms around the age of 30 I believe, or at least that’s when I started to notice something wasn’t right. I was a very active person before all of this.
Suddenly I found myself so exhausted after sleeping 8 to 9 hrs. a night that getting up in the morning and getting my daughter ready and off to school became something I dreaded doing. I was waiting tables at night and in school to receive my MA license. That’s where it all came rolling downhill. I started feeling like I was coming down with the flu with aches and pains in my lower back that carried down both of my legs.
When practicing on each other in school how to locate a pulse I remember always excusing myself to the restroom because having someone press lightly on my skin drove me to want to scream it hurt so bad! I tried brushing these symptoms off months because after all the doctors said I didn’t have the flu or anything, so I figure I was ok and just over tired.
I will never forget the flare that came on within the first year of showing symptoms.
I was at work and my whole body hurt so bad that it took every bit of energy I had just to walk into the building. Before I knew I found myself on the bathroom floor not able to move. That night the E.R. doctor said to me that he could not find anything physically wrong with me, all my labs were normal. So, I spent the next week unable to move off my couch and started slipping into depression. I thought maybe I am losing my mind, or I am getting older and I am not a spring chicken anymore. A year goes by and I learned to cope with the everyday aches and pains.
I became a very cold and mean person but was afraid of being made to look crazy by going back to doctors until this time around this flare had knocked me down so bad that I ended up being rushed into the e.r. I got lucky this time and was given what I call a prison sentence by a doctor who knew exactly what had been going on with me. He then told me that he was diagnosing me with Fibromyalgia, and he apologized for all the doctors before who failed to realize what was going on with me. But then here comes the part that I can’t tell you since being diagnosed how many times I have been told this, “Unfortunately Mrs. Miles there aren’t really any Doctors that specialize in Fibromyalgia in our area!”
For the next few months I felt so alone and almost like I was living in prison. I once was so active and energetic and happy I found myself now worrying about if I did this or that I would cause myself to go into a flare. The pain everyday felt like I was wearing heavy chains that kept me inside and away from friends and family. All I could see was darkness around me and there was not one ounce of light no matter how hard I tried to find it.
After being sent to Doctor after Doctor and having test after test done, I was referred to a pain management group! I was super excited because for once in several yrs. I could see the light! Well much to my surprise after being made to undergo surgeries that I didn’t need, talked to like I was only seeking drugs, and just made to feel like these doctors were not listening to me the darkness came back once again. The more I went to my appts with pain management everything just seemed to become less hopeful for me.
Which brings me to the flare that lasted forever it seems like. I called all of my doctors to only be told the pain could not be that bad and just to sleep it off basically. This flare brought 5 E.R. visits because the pain had me throwing up at times. I don’t know what happened but I remember laying on my couch after several weeks of dealing with this flare and I said to myself “GET UP!” I then realized that I could not rely on my doctors to help me, that it was time for me to start making myself very knowledgeable of this prison sentence and try to get my life back!
Unfortunately, I still have yet to find a doctor to help me, but I have begun to take steps in helping myself. So again, I feel like I was handed a prison sentence because some stuff is out of my control but who I am today is all thanks to this lovely prison sentence. I have become so much stronger through all of this along with learning to tell people no and getting to know my body’s triggers! I hope this touches someone that is going through it right now because if I would of had known about the websites and personal blogs in the beginning it would have made the beginning of my journey not so dark!
Just remember to always listen to your body, and there are some doctors out there to this day that will tell you you’re crazy! BUT YOUR NOT…. So don’t give up keep pushing. If I would have listened to those doctors I probably wouldn’t be here today, embracing this prison sentence nor getting to watch my 14-year-old daughter grow up to be a wonderful and talented woman!!!