Having a chronic illness, period, is beyond difficult. Then throw in trying to actually have a life on top of it and there are no words to describe how hard it is to keep up with everything. There are numerous chronic illnesses that can affect you in a number of ways, but the one I have is fibromyalgia. I have decided to share my journey with fibromyalgia thus far in the hopes that it may help others who:
– Think they may have fibromyalgia
– Are going through their own fibromyalgia journey
– Have a loved one who has fibromyalgia
– Have any other type of Chronic Illness
– Want to learn more about fibromyalgia or Chronic Illnesses in general.
What is Fibromyalgia?
Fibromyalgia is characterized as a chronic illness that causes pain to muscles and joints. But in reality, it is sooo much more than that. Lets just say, every fibromyalgia patient has different symptoms and no fibromyalgia patient feels the same. As for me, here are the many symptoms I have felt:
- Widespread muscle and joint pain
- Nausea
- Dizziness
- Difficulty with memory and concentration (AKA “fibro fog”)
- Irritable bowel syndrome (IBS)
- Restless legs syndrome
- Extreme fatigue
- Anxiety
- Sensitivity to weather
- Sensitivity to light
- Difficulty falling asleep
- Tingling and numbness in the hands and feet
- Painful menstrual periods
How I Got Diagnosed
It took quite a while before I realized what was going on with my body. I knew that I had started to feel differently. I knew that it was odd that I would come home from a normal day of work and feel like I couldn’t do normal activities that I used to be able to. Lets just say, the denial was real. I started to grow accustomed to the pain that I slowly started to feel. In my mind, they were normal aches and pains and everyone sucked it up on a daily basis and lived their lives, so I should be able too as well.
Random symptoms were hard to go off of when trying to decide if/how I should tell the doctor. I felt like I was going insane. The symptoms seemed to worsen at certain times and I couldn’t figure out why. It didn’t help that all of the symptoms I had were odd and I didn’t think to put them together in my mind as one diagnosis. It got to the point where I was missing a lot of work and slowly slipping into a dark place. I felt like a failure. People didn’t understand that I wasn’t faking, something was actually wrong. My family didn’t understand and thought that I was just being lazy and missing work for no reason. My fiancé at the time, now husband, doubted me. It was one of the toughest times in my life. That is until one morning when I was already at work and I received a phone call from my then fiancé. He explained to me that he had been listening to the radio on the way to school and thought that he finally figured out what was wrong with me. Fibromyalgia was described on the radio station that he was listening to and when they named some of the symptoms, he knew right away that it was what I had.
Shortly after, I went to the doctor and got the nerve to tell them all of my symptoms and that I thought that it might be fibromyalgia. Fibromyalgia is a fairly new diagnosis and because it is difficult to diagnose, not all doctors recognize it. The worst part is, in order to diagnose it you literally have to rule out everything else that it could be. What does that mean? Well lets just say it ended up costing me a ton of time, energy and money because of all of the many tests I had to endure. Turns out, I was right. All that time I thought I was going crazy. I felt relieved that I finally knew what it was but worried about my quality of life. Then began the many doctor referrals to find a doctor that would actually recognize fibromyalgia as a real chronic illness and try to treat me.
Once I found a pain doctor that would treat me, I learned that the main treatment for fibromyalgia is medication. Most of the medications are highly addictive pain meds. Turns out, I don’t react well to any pain medications. I either get extremely nauseous and dizzy or they have no affect on me at all. I found that muscle relaxers allowed me to get a few hours of sleep at night.
The pain doctor that I ended up with was great at helping me try a variety of things to see what would work for me. I even tried Lyrica. You know the medicine commercial you always see about Lyrica helping with fibromyalgia and joint pain?Well guess what… that didn’t work for me either. After more than a year of trial and error with medications, a year in which many days I ended up succumbing to the pain, or tiredness, or depression and decided not to go to work, I finally decided to just give up with the medications. I am now only on a muscle relaxer at night. But, I have come to realize that a muscle relaxer is not good enough. I have had to turn to massages from my Husband, icy hot patches, a tens unit, heating pads and any other massagers that I can get my hands on.
I am now at the point of my life where my Husband and I are trying to start a family, having fibromyalgia makes that difficult. Numerous doctors have told me that woman who are pregnant and have fibromyalgia have significantly more pain throughout their pregnancy. This of course terrifies me. Not only the notion of the pain being worse, but also that I will not have many options to help the pain. I have been told that pretty much the only thing that I will be able to do to help my pain is to get massages.
Where I Am Now
I try to continue to be strong. Weakness is probably my biggest fear/ pet peeve. I hate how people look at me. I hate how fibromyalgia is such a lonely illness. I hate that I know what most people are thinking about me. I hate that I used to be them, judging those who would call out of work without really knowing what they were going through. I hate that I actually care about what people think of me. I hate that I still have phases where I am in denial and think that I can do anything and everything that I used to be able to do. Most of all, I hate that it is a silent illness, that you cannot visibly see the pain and suffering I am in on a daily basis. Most days I just plain old feel like a failure. There are so many days where I just want to give up and not do anything. But giving up will not make me stronger. I have decided to fight through this dreaded silent illness. I will not let it win. I will not let it rule my life. I will learn to tame it.
Fibromyalgia complicates everything, but I will not let it define me.
Kirsty Conway 