The day I received my fibromyalgia diagnosis is also the day I formed a love/hate relationship with it.
It was a hot summer day in Arizona when I received my diagnosis.
I entered my doctor’s office with hope of finding out why I felt like crap and what could be done to make me feel better. Little did I know that only one of those would come true.
*Disclosure: I am not a medical professional and nothing I share is to be considered medical advice. Through this blog, I share my personal experience of living with multiple chronic illnesses including but not limited to fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, and abdominal adhesions. This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links.
Loving feeling
Unlike others, I didn’t have to wait long for my diagnosis of fibromyalgia.
I do not believe that it was because my doctor was better than the ones they saw. Nor was it dumb luck.
It is my opinion that the reason my doctor was able to identify it so quickly is because I didn’t seek a diagnosis until pain, fatigue, and inability to function took over my entire body and minute of my life.
Do I recommend waiting as long as I did? Of course not.
Why I waited
The reason I waited for so long had to do with medical care I had received in the past.
I had TMJ surgery when I was 13 years old. The pain in my jaw was ignored until I was no longer able to open my mouth properly. When finally addressed, the surgeon had to reconstruct the tendons.
In the spring of 2002 I had laparoscopic surgery to remove loose cartilage and bone fragments from my right knee. For eight years my knee would without warning go out, causing me to fall often.
During that time my pleas for help fell on deaf ears. Doctors refused to listen to me. Instead of running scans, they told me to go home and exercise. A little FYI, walking with bone and cartilage fragments lodged into the joint of your knee is impossible!
What did this have to do with my fibromyalgia diagnosis?
Unbeknownst to me, I had been experiencing symptoms of fibromyalgia for many years. In fact, my first recollection of a fibro flare occurred when I was ten years old.
Back then my flares were short-lived and they didn’t occur often. Because I felt fine in between flares, it was assumed that I was coming down with the flu each time. Once or twice a year didn’t seem all that odd.
It wasn’t until my late twenties that my flares began to increase and that minor pain began seeping into my daily life. During this time I was also pleading with doctors to figure out what was wrong with my knee.
Frustrated by their refusal to acknowledge a very real problem, there was no way I was going to risk further humiliation by sharing that I was exhausted and felt like I was constantly coming down with the flu!
Enough is enough
It was in my early thirties when pain and fatigue turned my world upside down. When I really needed an answer. That was when I became desperate for that answer.
Receiving my diagnosis of fibromyalgia was a joyful moment.
It wasn’t that I wanted to be ill or in pain, but that I needed a reason for how I was physically feeling.
Having a diagnosis validated my pain and suffering.
Fear and loathing
Unfortunately, the love of receiving my fibromyalgia diagnosis was quickly replaced with fear and hate.
Seconds after my physician diagnosed me, he shared that there was no cure.
Although he assured me that we would be able to reduce the pain it caused, I couldn’t shake the heaviness of what living with an incurable illness would mean for the rest of my life.
Little hope
The moment I arrived home I hopped on the internet to do some research.
Instead of reading about people who were able to reduce their pain and regain the life fibromyalgia stole from them, all I saw were stories of people who were in agony.
Now mind you, this was in 2003. A lot has changed since then. In fact, I didn’t have access to the pain relieving tools that I do today. Had my pain management plan began with what I am successfully reducing chronic pain with today, my life would have been very different.
Instead, all I had access to were pharmaceutical medications that made my life worse. My body hates medication. I am one of the .01% of people who experience the opposite effect of a medication. For example, sleeping pills. Instead of helping me sleep, they kept me awake for days! Muscle relaxers did anything but relax mine, instead I experienced an increase of spasms and pain.
For ten years I hated that I wasn’t able to achieve any level of relief.
I hated never knowing how much pain I would be in from one day to the next.
Waking up feeling fairly decent only to fall victim to pain a few hours later was frustrating to not just myself, but to my family as well.
There is more than pain to hate
I despised not having the energy or strength to do what other moms and wives were doing.
Hearing a jackass tell my daughter that they felt sorry for her because she didn’t have a “normal” mom broke my heart and is why I began hating my body and self.
Fibromyalgia became an excuse for doctors who didn’t want to treat me.
Instead of figuring out the cause of my excruciating abdominal pain following my hysterectomy, they blamed fibromyalgia. Which if you know my story, isn’t true. Click here to find out what the real culprit was.
Fibromyalgia became an “F” word that is far worse than any other one in the dictionary.
Love/Hate
Prior to 2013, I never thought it would be possible to be okay with my fibromyalgia diagnosis. But here I am in 2019 and I am at peace with it.
Why?
Because of everything it taught me.
I still hate the pain and inconsistency of flares, but thanks to the lessons I have learned since my initial diagnosis, I have learned how to make living with it less painful. Fibromyalgia no longer controls my life. I do!
Thanks to this awful diagnosis I have learned to question everything and everyone. I became my own advocate when the medical community failed to fight for me.
It made me stronger and wiser
My diagnosis made me both physically and mentally stronger. I have learned so much about my body and how to treat it.
I learned that fighting fibromyalgia was futile and fell in love with studying it and my body.
There’s still no cure for fibromyalgia on the horizon, but as I have learned in the past six years, there is hope of living well despite it.
The pain that I experience now is quite predictable and I have learned to work with and around it.
Until death do us part
Would I prefer a life without fibromyalgia? You betcha!! But for now, I am at peace having a pain management plan that significantly reduces my pain and symptoms.
In my, eBook Make Pain Your Bitch: How to Dominate Your Chronic Life, I share the changes I have made and how I identified triggers that made it possible to live better despite my diagnosis and how you can too.
Having learned how to reduce my pain and triggers is why I love my life, even if it means having fibromyalgia for the rest of my life.
Related posts:
- 5 Ways to Reduce Fibromyalgia Pain
- Seven Embarrassing Fibromyalgia Symptoms
- The Advice I am Glad I Did Not Take – Living with Fibromyalgia and Psoriatic Arthritis
- The Cost of Living with Fibromyalgia
Cynthia, I’ve never met (or even heard of) anyone else that has the same problem with medication — my body reacts the same way, opposite of how the drug is expected to work. I honestly thought I was the only one that happened to. Like you, I’m extremely careful about taking medication. I’m not adverse to taking medication if I need it; it’s just that the benefits have to outweigh the risks of how my body will react. Pinning this!
Sorry you are the same, but it’s also nice to know someone else who has the same problem.