Dealing with fibromyalgia…
Getting diagnosed with fibromyalgia in college meant that I was young and did not know what I was being told I had. I knew that if you were diagnosed with some thing, then you had to be put on a medication to deal with it. I knew that it was not life-threatening, but it was also something that was not temporary, and I was going to have to deal with roughly for the rest of my life. I started on an anti-depressant which I was told would be for handling my chronic pain. That it would be “turning down the dial” as they say, turning down my brain, so that it did not read every interaction my body came in contact with as pain or danger.
I was on that medication for five years and with physical therapy, a ton of love and support from my mother (who was also a physical therapist), I began to navigate my new way of handling life. Before the diagnosis I knew that I had a hip injury. While the injury was chronic I had gotten surgery, so I had assumed that the pain and frustrations that went along with it were soon to be resolved. But now I had a larger setback with less of a clear picture on how to fix it.
I became a person who I am now only occasionally reminded of. I was a victim, not a victim, because of my circumstances, but a victim, because I was young and chose to be. I was in a situation that I didn’t know how to handle, no one knew anything about it or how to effectively help me. Many other doctors at that time did not believe in this diagnosis and so when I would explain it to them, they would dismiss me for saying it’s in my head. Yes the issue is in my head but from a nurological sense not a mental illness.
Luckily, no matter how miserable and frustrated I became. I had my supportive mother, who would not give up on finding ways to help me feel better, and become a more positive person on the outlook of their future. Don’t worry we got into plenty of arguments. And now having 12 years of experience can I empathize when she would throw up her hands and say “OK it’s up to you if you want to get better or not. I can’t force you. You will do it when you are ready.” I’ve always said I perform better with tough love, but sometimes tough love still leaves you stuck in the same spot doing nothing and feeling miserable. Time was truly the component that made the biggest difference and patience. Even though to this day I can say I don’t have the best patience with many things. But now that I can reflect I can say without a doubt things will get better over time if you make what’s important to you a priority.
After five years of medication, I decided to try going off of it. Mainly because my personal belief was that I did not want to be on a medication for the rest of my life. Especially at that age when I was not doing a good job of taking it on a regular basis and was still drinking like a college kid; the side effects of missing a pill were brutal and I had to learn the hard way more than once.
By the time I came off the medication, I was working out pretty regularly, training clients, and living a pretty decent an active lifestyle. Many people do not remember the period of my life where I was truly not able to do much, that includes crying every time I had to walk a block just to get to the doctors office. Growing up in an active family meant that my expectations for an active life may be different than others. Ultimately I wanted to live life and not have the pain weigh down my thoughts on a daily basis. I wanted to be able to participate in activities without thinking about how much pain it would cause or if I could push through, but then what would the outcome be on the days following.
My workouts were consistent, but nothing impressive, when I began as a trainer at equinox I was immediately embarrassed by my lack of strength and knowledge in the weight room. As a former dancer, I had great spatial awareness and body mechanics that I did not know anything about true strength training. I decided if I was going to continue in this profession, I had to get educated. In addition to that, I would have to solve my chronic hip pain (surgery made it worse because of the fibro) and make myself more comfortable with the fibro flareups, and that’s when my mom found the most amazing doctor, and the only doctor I recommend to this day.
Dr. Perretz, an osteopathic doctor. Or who I used to call my voodoo doctor, because I knew nothing about holistic/eastern medicine. I remember joking that I wasn’t sure what my first visit was going to be, and I fully expected him to wave a chicken over me while palpating different muscles, and saying yes, or no without doing any standardized tests that I was used to. And I was correct, minus the chicken, he took two hours with me on my first visit and every visit since has been up to an hour. He does not rush you and he takes a look at your situation and addresses you as the entire person you are. I had never experienced a physician, taking so much interest in me before. It felt amazing to feel heard and not called crazy for my “unexplained” symptoms (or as my brother says babyitis).
What I love about this holistic medicine is that I never know what I’m going to expect when I go. I may think I’m going in for one type of treatment, but he could determine I need some thing else, or a combination. I also do not have to go more than a few times a year. Depending on what issue we are addressing and how severe, it could be four sessions in a month and then I don’t return for six months or a year. Sometimes I go in every few months or what I call my tuneup or my oil change. Even with new unexplained symptoms popping up randomly over the course of the last 10 years he has never given up on me. He has jokingly said I have bruised his ego because he cannot figure it out. But he enjoys puzzles, which is why he chose this profession and I’m glad that I can provide the complicated pieces for him to put me back together.
Below is where I came from and where I am at currently:
Couldn’t put clothes on without crying
Extreme fatigue, couldn’t stay awake in classes and would fall asleep in public a lot (dangerous for public places)
Would take 2-3 hr naps daily
Flare ups feel like the flu without the illness
Have to move to prevent pain but not too much or it will create pain
Couldn’t have people hug me or playfully joke around or fool around with my boyfriend without communicating very specific touches (poke of a fiber-horrible/palm of a hand-tolerable)
10 years later:
Lifting 5 days a week with manageable pain and discomfort
Can train for a 5k if I choose but i still dont enjoy running
Can walk around cities while I travel without fear I wont be able to stand the next day
Says yes to all activities that interest me!
Low to no flare ups or at least whole body ones
Pain points are still there but i dont have to be as worried about them and can bounce back faster if affected
What’s working:
Daily movement-low impact cardio, strength training, yoga, dancing, biking etc
Health-I stick to a low dairy and gluten free diet that’s high in protein and fiber (it’s what’s worked best for me post a gut protocol i went through)
Lots of water and liquids throughout the day but low/no caffeine
Less alcohol
CBD/THC microdosing for pain
More sleep-i rarely have days where I jump out of bed and run out the door anymore and it’s mad a big difference in how my body feels and my ability to be productive without getting overly fatigued during the afternoon
SUNLIGHT and warmth-I NEED IT, daily (winter is tough for me)
