Fibromyalgia. I’m assuming that a good portion of readers have heard of it or know someone who has this diagnosis as more than 10 million people are diagnosed yearly in the US. You may think that the pain and exhaustion are all in their head. You may think they are weak or are exaggerating. Or you may even think they do it for attention. These are all thoughts I have had about the disease until I was diagnosed in 2014.
http://www.activebeat.com describes fibro as, “Fibromyalgia is a musculoskeletal disorder that amplifies the way the brain processes pain, often leaving the body’s pain receptors in hyper drive.
The condition causes widespread pain—and in turn fatigue, sleep deprivation, and depression—and typically begins following some type of severe physical trauma, such as an accident, surgery, or massive psychological stress.” For some this condition doesn’t affect their daily lives while it can be debilitating for others.
Often fibro comes in flares. Joints swell, headaches happen, exhaustion hits like a wall, and anxiety sets in. Those are the days where it’s hard to get out of bed.
I feel like I can pinpoint the exact moment my life changed. Just as the description above, my pain started with trauma. In January 2013, I was in a car accident where I accidentally ran a red light, was t-boned, hit by another car while spinning, and hit a pedestrian. I remember that moment so clearly and the next few months were filled with both emotional and physical trauma.
By October of 2013, I decided to leave the job I loved to take care of myself. Luckily I had an amazing fiancé by my side who helped fight for diagnosis. Originally I was diagnosed with garden variety depression and anxiety but we knew something else was wrong. I was in constant pain in my shoulders and neck, I was sensitive to touch when the slightest graze hurt, and my joints were always swollen and stiff.
Then my GP sent me to see my amazing rheumatologist who diagnosed me with fibro. It was the start of a long few year battle to see the right doctors for the right treatment. One doctor was so aggressive that she thought fentanyl was the answer and she even prescribed synthetic THC pills (synthetic marijuana)… that just made my pain cycle worse and made me a walking zombi. Then I had the opposite experience with my doctor at the pain clinic told me I just needed pain acceptance therapy which I rejected. I’m a 28 year old human, wife, and mother and wasn’t going to accept the rest of my life was just accepting that this was as good as it will get. I had never felt so hopeless leaving that appointment and cried the whole drive home.
Luckily my rheumatologist didn’t accept that conclusion either and put me on scheduled pain killers which changed my life.. that really helped with the bounce back pain and it helps keep me moving which can help prevent stiff joints.
After 3 years of searching for the right pain doctor, I found an amazing Chronic Pain Specialist. He did 6 weekly rounds of nerve blocks and it definitely helped. It consisted of 20 plus shots at every appointment in my shoulder, neck, and forehead that works to break the pain cycle. He also discovered I likely have a collapsed disc in my neck which we are currently exploring. This treatment has definitely improved a lot of things and after I’m no longer pregnant or nursing I can go back for regular injections again.
So how does this affect my life as a wife… well a lot. I couldn’t do it without my amazing husband. Part of fibro is extreme exhaustion (add in the narcotics I have to take). There are a lot of stereotypical wife things I can’t do and if I do too much my muscles feel like I ran a marathon the next day. Rob does the grocery shopping and the bulk of the cooking and he does it all with a heart full of love and a smile. I honestly don’t know how he does it all and how he is constantly so selfless.
Any hormone changes can cause a flare so pregnancy and postpartum is a challenge. We didn’t plan on that during our first pregnancy but this time around we have supports in place. I’ve learned I have had to take care of myself before I can take care of my child. We have an amazing nanny who comes to our house 4 hours a day so that I can rest. Taking that rest time makes me a better mom all the times I am with her. Rob is also one of the best hands on dads I’ve ever seen. He helps me avoid flares by making sure I get enough sleep, avoiding foods that cause flares, takes me to doctors appointments to stay informed, and he picks up the slack around the house that I miss.
I wanted to share this blog because I feel there is so much stigma and biases towards fibromyalgia and other rheumatic conditions. To many people, it is intangible what it would feel like from being and feeling “normal” to feeling like your body is rebelling against the “normal” and simple things you feel you should be able to do.
There is a lot more understanding around fibromyalgia and the treatments available. What was once viewed as a psychiatric illness is now recognized as a rheumatology diagnosis. New treatments are coming out daily to help people live their lives to the fullest. If you suffer, keep hope. If you don’t, choose humanity over judgement.