My Fibro Story

“I’m dying to be alive, not trying to just survive”. That’s a lyric from “Dying to Be Alive”, a song by my all-time favorite band, Hanson. (Yes, Hanson). Those words have never rang more true to me than right now. I’ve been in survival mode for the past four years. I’ve had ups and downs with work and changing careers during this time, but it’s mainly been due to my health. It’s been four years since I’ve been without pain and for over 2 of those years, I didn’t know what was causing it. I went to what felt like a million doctor’s appointments and had many tests done, including X-Rays, MRIs, blood work, and even a nerve test. The tests all came back “normal”. I told one doctor that there was nothing normal about a woman in her mid-twenties experiencing constant pain. All he did was shrug and sign me up for physical therapy (which didn’t help, by the way). It wasn’t until 2014 when I was finally diagnosed with Fibromyalgia. Since there is no test for Fibromyalgia, doctors have to rule out everything else before a diagnosis is made. I was happy to finally put a name to this pain that I had, but I was certainly disappointed to learn that at age 28, I have a chronic illness with no cure, that is difficult to treat, and is very misunderstood.
There are many people that don’t understand what Fibromyalgia is or don’t believe it exists. If you are one of those people, then buckle up, because I’m going to tell it like it is. Fibromyalgia is a chronic pain condition, which unfortunately means I’m not going to “feel better soon”. I don’t feel one type of pain. Sometimes I feel throbbing pain, sometimes I feel shooting pain, and sometimes it feels like part of me is on fire. The pain is in my joints, muscles, and nerves. People with Fibromyalgia have what doctors call “tender points”, which are the areas of the body that are the most sensitive and painful. The worst ones for me are the knees, back, elbows, neck and shoulder blades. I also have what are called “flare-ups”, which are periods of time when the pain is at its highest and it is absolutely unbearable. Those times are when literally everything hurts, even my skin. Flare-ups can last for a day or several days and usually occur during periods of stress, overexertion, or hormonal changes. There are days which I refer to as “tolerable” when the pain isn’t severe, but it never goes away. Aside from pain, fatigue, difficulty sleeping, anxiety and migraines are other common symptoms of Fibromyalgia, all of which I deal with as well. I manage my symptoms with medication, but because I’m constantly overexerting myself, I likely don’t feel as much relief as I should. Like any condition, each individual’s experience may be different so pain levels, response to medication and treatment, and other symptoms may vary. It is hard for people to believe that I’m in chronic pain. I’m 29 years old now so I’m young and I “look fine”. Not every condition calls for a cane or a wheelchair. Millions of people suffer with depression and anxiety every day. Those are real illnesses, right? So is Fibromyalgia. Just because you can’t see it, doesn’t mean it isn’t there.
The reason for my “constant overexertion” that I mentioned before is my job. I’m a certified pharmacy technician in a retail pharmacy and I work full-time. In addition to the job being mentally stressful, I’m on my feet between 8 and 9 hours each day. I don’t have a typical Monday – Friday, 9-5 schedule. It varies week to week and I don’t have consecutive days off, so getting into a routine and getting enough rest is difficult. My husband and I live paycheck to paycheck to make ends meet so I need to work and can’t reduce my hours. I will admit that there are days when the pain is so bad that I know I can’t last the day. I’m ashamed when I have to leave work early because of pain. I end up feeling guilty instead of being satisfied that I’m taking care of myself. I hate letting down my team, and I feel like they don’t believe me. I know my job isn’t exactly “Fibro Friendly”, but there aren’t many options out there for me. It’s tough to find work in general so this is all I have right now. Overall, I push through because I know I have to, but it is a struggle every single day.
Fibromyalgia has most definitely turned my life upside-down. Most people my age get home from work and cook dinner, go out and run errands, maybe do some cleaning, or even meet a friend for happy hour. Once I’m done with my shift, I’m in severe pain and my body has shut down. I immediately get changed and get into bed. Sometimes I don’t eat dinner because the pain and exhaustion have taken away my appetite. Aside from work, daily tasks are difficult to manage as well. Taking a shower is like running a marathon. It takes so much out of me that when I’m done, I have to sit down for a while in my towel before I get dressed. Regular household chores like laundry, vacuuming, and making the bed are draining. Shopping is avoided at all costs. (Yes, I’m serious). Cooking doesn’t happen too much either. My social life is pretty much non-existent. I have family and friends but I don’t see them much. I tend to only go out on special occasions. I use up all my energy at work and after that I have nothing left in the tank. Trust me, it’s not how I want it. I’d much rather be having fun than be stuck in bed.
Having a support system is important when you live with chronic pain. Mine isn’t a big group, but I’m fortunate to have the support of a couple people. My husband has learned more about my condition as time went on and he knows what my limits are. He’s there to listen and will do what he can to help, like the grocery shopping and other household chores I’m unable to do. My mom has been very supportive as well, but that’s nothing new. She’s been there for me my entire life, but I’ve never needed her more than I do now. She can relate to me due to her own condition which is similar to Fibro, so it helps to talk to someone who truly understands. Mom’s always just a phone call away and I’m grateful for that. I’m lucky to have them in my life and I am dead serious when I say that they are the reason why I’m still here today.
The main reason I want to share my story is to make more people aware of what Fibromyalgia is and the major effect it can have on someone’s life. I want others with Fibro to be believed by their family, friends and physicians. The more people who are educated about this syndrome, the more likely that more research will be done, and eventually better treatments will become available. I know that people who don’t have Fibromyalgia will never truly be able to understand, but an acceptance of our condition would go a long way. The judgments need to stop. The invisible illness that is Fibromyalgia needs to become visible. Writing this post wasn’t easy because I mostly feel embarrassed to say I’m in pain. Many people immediately think “drama-queen”, so I try to keep my Fibro conversations limited. I want to put this out there for others who are going through a similar situation too. Make sure you have some good distractions. Keep fighting, even when you feel like giving up. It’s not easy, but I hope someday we won’t have to fight as hard. 

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