Any illness or disability has the potential to completely upend your life. When it’s an ‘invisible illness’ it can be extremely isolating. I have decided to be open and share a difficult part of my life: I have Fibromyalgia.
While it isn’t completely understood (and should be studied more), it is thought that fibromyalgia is caused by the way the brain receives and sends pain signals. Often times there are ‘triggering’ events, or something that a person can look back at as the beginning of their health issues, such as an accident or traumatic injury. For me, it all started after getting my finger caught in a door that was then pulled by a gust of wind that took me with it and broke my wedding ring in the process. The ring was an easy fix, but x-rays, MRIs, and blood tests couldn’t explain the lingering pain that I was experiencing. Everything appeared fine. Months of physical therapy with no improvement led to getting a steroid shot in my elbow (did you know they can put a needle there?!) and then carpal tunnel surgery. That gave me a brief period of relief.
Over time the pain has moved from my hand to my arms, head, foot, back, and is now causing problems like spastic colon and acid reflux. Test after test comes back normal, which is a hallmark of fibromyalgia. There is nothing definitive that a doctor can do to prove you have the condition. A diagnosis is generally made based on your symptoms, and it’s very important to advocate for yourself and be honest about your pain with your physician. Fibro also looks like many other conditions, like lupus or rheumatoid arthritis, and that makes it even harder to pinpoint and get an actual diagnosis.
This has led to some interesting interactions with medical professionals. Many may be aware of the disorder but do not treat it, while others do not even believe it exists. I have seen a doctor’s eyes glaze over at the mention of fibro, and from then on I could tell he wasn’t listening to a word I was saying. On the other hand, I have seen doctors narrow their eyes and hang on every word, looking for evidence that I’m just addicted to pain killers and asking for a prescription.
The main symptom of fibro is widespread pain, and it includes every type of pain you can think of: sharp pain, dull aches, numbness and tingling in the extremities, shooting pain… you get the picture. The accompanying symptoms can be different from one person to the next, and I have experienced a wide range of those, too. Sometimes I find that I have sensitivities to light or sound and need to find a quiet place to be alone. Odors and scents really get to me; something that smells good one day may make me nauseated the next. Sometimes I have random bouts of nausea that seem to have no cause. IBS (irritable bowel syndrome) is another condition that fibro sufferers often have, and I’ve recently had spasms so bad that I ended up in the ER. I have developed food allergies that are so severe I have to carry an EpiPen with me in case I accidentally eat something that causes an anaphylactic reaction. My sense of taste is altered some days, with foods tasting metallic or sometimes like nothing at all. My coordination is out of whack, and I stumble and trip and bump into things. Sleep is difficult because getting comfortable is a near impossible task, and the restlessness aggravates the pain. It’s hard to catch up on sleep once you miss it, and that adds up over time. There are days that I sleep for 11+ hours, and days I’m lucky to get four. Like everything else, it’s very difficult to tell what my body needs in order to function. It is very common that I overdo it one day, only to suffer the next.
One of the most frustrating symptoms for me is what we refer to as ‘brain fog’. People with fibro experience feeling a sense of fogginess in their thoughts and sometimes speech. I find myself having trouble grasping what I read or hear, and I can’t always find the word I’m looking for. Sentences come out garbled and I need help piecing together what I’m trying to say.
All of these symptoms come and go. Sometimes I have multiple problems going on at once, some days it’s just the pain. A good day is when the pain stays around a 3 on a scale of 1 to 10. Those days I usually have chunks of time where I feel ok enough to tackle projects, or show homes, or go grocery shopping. The majority of the time I’m hovering between a 4-7 and trying to ‘fake it til I make it’ by smiling and carrying on with my day. Ignoring the pain and other symptoms is impossible, but I try to hold them at bay the best I can and push myself to get through. On the worst days the pain is beyond a 10, to the point that it hurts to blink. Those days are spent in bed lying as still as possible, simply existing.
This post is extremely personal. For some I may be over-sharing, but being open about my health has been one of the most beneficial things I have done for myself. There is an emotional toll that comes with any chronic condition; anxiety, frustration, sadness, and a sense of loss of the person you were before. I’m very fortunate to have family that is beyond supportive, and friends who are understanding and care for me. Some of my friends are facing their own health battles, and sharing in the struggle instead of going it alone makes the journey much less frightening. A chronic condition is one that isn’t going to go away, and that means it will affect you every day for the rest of your life. I plan on sharing more of my story with you. If you or someone you know is struggling with chronic illness, I’m here for you! Sometimes knowing you aren’t alone makes all the difference.
I want to thank Derek for, well, everything. He is kind and caring, and compassionate beyond measure. He is always there for me. It’s hard to find the words to describe how grateful I am for his support and love. We are a team in work, and a team in life. I love you!!