The Invisible Mystery Illness: Fibromyalgia

Chronic pain is an unfortunate part of my life that I have been dealing with since I was 10 years old. I was in a really bad sledding accident at “Suicide Hill” and hurt my back. If you grew up in the same area as me, you will know what place I’m talking about. At one point, they started having an ambulance on site to deal with all of the accidents that would happen. You probably wonder why our parents let us sled there. Well, the front side of the hill was fine, it was the backside that was steeper and had poorly made jumps. One day, I decided to sneak over onto the backside. My sled came out from under me on a jump and I landed directly on my back; the pain was so bad I could barely move. My step dad had to drag me back to the car on a sled, turning it into a makeshift gurney, and then he carried me into our house. My back problems developed from there and I found myself in physical therapy at age 14.

From there my body just seemed to fall apart piece by piece. I re-entered physical therapy for my knees when I was 16 and then went back a few more times before I graduated. My doctors told me that I should stop doing gymnastics, but I did not listen to them. I loved all of my sports, no matter how much they made my body hurt. (See last week’s blog for more info on my sports history.) When I was in college, my upper back pain seemed to get worse. I was constantly going to my doctor with various complaints. I was depressed, I was having trouble sleeping and felt tired all the time, the pain in my body was spreading and my mood was terrible. Towards the end of my sophomore year, I went into my doctor and was complaining that my forearms were hurting. This was the day that she finally questioned whether or not there was something more behind all of this pain I was in. She brought out a book and started talking to me about fibromyalgia. I was not diagnosed that day, but she set the train in motion that led to my diagnosis.

In May of 2011, I went to my pediatrician and told her that my college doctor thought I could potentially have fibromyalgia. Fibromyalgia is a tricky illness to diagnose because there are so many symptoms and not everyone exhibits the same ones. There is also no known cause which makes it trickier to diagnose. There were a few different tests done on me to see if I had lupus or rheumatoid arthritis and when neither of those came back positive, they diagnosed me with fibromyalgia. Symptoms start after a physical trauma, an invasive surgery, or even a significant amount of psychological stress. The most common symptom among patients is a widespread chronic pain. There are 18 tender spots on the body that ache when touched; 9 on one side of your body and 9 on the other. At the time of my diagnosis, patients had to be experiencing pain in at least 11 of the 18 tender spots in order to be diagnosed with fibro. I was experiencing pain in all 18. After doing a little bit of research on fibromyalgia, this is no longer used as a form of diagnosis but can be helpful for treatment purposes. There are two tests used to diagnose fibromyalgia; the widespread pain index and the symptom severity scale. I do not believe I have taken either of these, so I am going to talk to my doctor about this at my next appointment!

In addition to widespread pain, a main symptom of fibromyalgia is fatigue. Even if I sleep for a long time, I can oftentimes wake feeling exhausted. The pain can be so bad sometimes that it is hard to fall into a deep sleep. For me, it is my legs that keep me awake. I can be so restless that sometimes I will have to get out of bed and do 10-15 minutes of yoga for my legs in order to be able to go to sleep. Feeling tired can make my whole day more difficult. My students can tell something is off because I am not quite my usual energetic self. Sleep is so important to how we function which is why I try to take care of my body and get a restful night’s sleep as often as possible. One of the easiest ways for me to do this is to finish my night off with restorative yoga or a long hot bath. “Fibro fog” is also a lesser known symptom that refers to feeling mentally foggy on certain days. This is ABSOLUTELY true for me (and I don’t drink coffee, so I feel it is even worse). On foggy days, it is hard for me to focus and concentrate on my important tasks and it is hard for me to recall answers to simple questions. There are also a handful of illnesses that coexists with fibromyalgia; not surprisingly, two of them are anxiety and depression. It can be anxiety inducing and depressing from just being in so much pain all the time!

I sunk into a deep depression after my diagnosis. On one hand, it was comforting to finally have a label for what was wrong with me, but on the other, it was hard to deal with the fact that I could potentially be dealing with a lifelong illness that has no known cause or cure. The first semester of my junior year of college was spent in mental turmoil trying to decide how to handle this diagnosis. The pain was so bad it interfered with my everyday life. I wound up quitting Ultimate Frisbee because I did not want to make the pain worse and I also received my first D in a college class. For a while there, I let being diagnosed with fibromyalgia turn me into a victim. One day I finally woke up and decided that I needed to fight to make my life better. Fibromyalgia is not a death sentence and I was not going to let it ruin me. Besides, I was only 19. Could I really let this ruin the rest of my life?

I was on a lot of medications to control my symptoms and I decided that was not how I wanted to live the rest of my life. I started to look into how I could fight fibromyalgia through more holistic means. I began fighting fibro with yoga, weight lifting, and generally not treating my body like shit. It was easy to neglect my body while in college. Drunken nights that would lead to fast food binges, lack of sleep, or both; stress inducing midterms, group projects, papers, and finals; and trying to balance work, friends, clubs, and a relationship. Food is fuel and since I was feeding my body crap, it makes sense that I would feel like crap. Discovering a need to feed myself in a more balanced way was only once piece of the puzzle towards fighting fibromyalgia. I also discovered that the stronger I was, the less pain I was in. Who would have thought that having stronger muscles would make me feel less pain!? Apparently, not me, but I am so happy I discovered weight lifting as a form of medicine. It is funny reflecting on all of this, because looking back, my physical therapists were basically just having me GET STRONGER to fix my back and knee problems. I am coming up on 8 years of being diagnosed with fibromyalgia and I truly feel that one day I will be able to remove that diagnosis from my medical chart.

We are often convinced that we need to take a pill to heal ourselves when really we have the power to heal ourselves (most of the time). Eating better, moving your body on a regular basis, sleeping well, and managing stress can go a long way in improving your overall health. I am hoping this blog will give you some insight into how I have done that for myself. Maybe what I am doing won’t exactly work for you, but that is because we are all different. I am here to tell you about my journey and how living a more holistic life has helped me to battle fibromyalgia, depression, anxiety, and PTSD. You may need to find your own way, but I can help be a guide on where to start looking. Battling a chronic illness like fibromyalgia is hard work, but it is worth it to minimize the intense pain I have felt over the years. I hope this can shed a little bit of light on what it is like to have fibromyalgia. Let me know if there is anything specific you would like more details on!

#PTSD #yogablog #fibromyalgia #depression #anxiety #mentalhealthblog #mentalhealth