It’s a beautiful Sunday afternoon. The sun is finally showing its nose, and the warm rays feel good on my back. I am waiting on a city park bench in North Minneapolis, in Minnesota.
I am reveling in the laughter of kids playing with their mom on a play structure, all the while thinking how difficult it would be for me to chase after my own kids at that pace.
A few minutes past our appointment time, Sophie arrives. Her name is not really Sophie, but she prefers I keep her real name a mystery. So be it. She is now Sophie!
I connected with Sophie through mutual friends, at an Easter brunch gathering earlier this month. Our friend knew both of us struggle with fibromyalgia, so she strategically placed us side by side at the dinner table.
Sophie and I hit it off immediately. She has this bubbly personality, a contagious laugh and a certain candid way to view the world that mesmerize anyone who meets her. And I was no exception! It helped that our partners got along like best friend the minute they met!
We briefly talked about our Fibro lives, but then decided it was not the right time to feel sorry for ourselves. I asked Sophie if she would meet me at some point to share her story with you guys, and she said she would love to.
And here we are.
Sophie is a youthful 31 year-old woman. She has a 3 year old son and a 2 year old son. She is pregnant with a little girl who will meet the world mid-June. To say she is one busy lady is a gross understatement!
Sophie brought along her two kiddos. They are simply adorable, and inevitably, the conversation revolves around them for a while. Her oldest, Tyrone (an alias), is autistic.
He is non-verbal and gets frustrated easily. To boost, he is a “runner.” I ask Sophie what that means. “That means we have alarms on the front and back door that alert us which door was opened.
We have double locks on everything. Earlier this year, he figured out how to climb on a chair to unlock the door. So now we have a deadbolt at the top of the door.” Sophie seems tired.
The younger boy, Antwan (also an alias), is your typical 2 year old. He barely know how to walk, yet he runs everywhere! He refuses to eat solid foods. A speech pathologist follow his progress and for now, Antwan is growing just perfectly.
Sophie’s partner, Brett (you guessed it: an alias!) joins us and takes over the kid-watching duties. Sophie and I go sit at a nearby picnic table, and once we are all settled, it’s time to ask the tough questions.
How long have you suffered from Fibromyalgia?
As long as I can remember. I was a little girl and going to the bus stop was exhausting. 20 years ago, nobody had heard of fibromyalgia around here. That did not cross anyone’s mind, ever.
So when were you diagnosed?
In 2007. I was 21 years old, I had just had a miscarriage and I was lost. The doctors I saw would tell me it was depression, or generalized fatigue. One even told me my symptoms sounded made up, because it didn’t match anything he had ever heard of in med school!
That must have been frustrating!
I normally answer that question by saying, “You have no idea,” but something tells me you do have a good idea of how terrible it is to be treated like a liar and a hypochondriac.
Unfortunately, yes. I know it can be a daily battle to get people to see things like we do! So did you find a doctor who believed you?
Yes! In 2007, I found this young doctor at the neighborhood free clinic. She was ready to listen to me and willing to figure things out. She diagnosed me with fibromyalgia after a couple months of observation. She put me on anti-inflammatory medications and life was bright again!
Did ever think it was fibromyalgia before she told you about it? Who initiated the diagnosis?
I had done a little bit of research, but I couldn’t find anything on my own that actually fit my symptoms. I was at a loss. Ten years ago, there were not nearly as many sources of information on fibromyalgia as there are today.
How did your loved ones react when you told them you had fibromyalgia?
My parents were open to learning about it, but that’s about it. They knew nothing about fibromyalgia and at the time, the overall consensus on fibromyalgia was that it was the default diagnosis when the doctors didn’t know what was going on. I didn’t tell my friends right away, I was scared they would make fun of me.
One day I remember having lunch with a coworker with whom I got along well. In the conversation, I tell her that I had been diagnosed with fibromyalgia.
She looked at me for a moment, and then asked me, “You’re kidding, right? You know it’s not a real thing, right?” I was baffled and hurt. I just didn’t know how to respond, so I laughed and said something along the lines of, “Yeah, I know. That doctor doesn’t know what she’s talking about.”
I felt so vulnerable that day. I had opened up to someone I trusted because I was tired of carrying the burden alone, and the reaction I got was to be ridiculed.
I remember thinking I had not laughed at her when she had told me she was diagnosed with high blood pressure. I couldn’t quite understand why she was being mean like that. It didn’t make sense to me.
Sadly, I think most Fibro Warriors have encountered people who were uneducated at one point or another. Speaking of points, what’s your most sensitive trigger point?
Ha! I see what you did there! My worse trigger point has to be my knees. When I was younger, there were a couple of times when my mom took me to the doctor and I was told I had sprained my knee. Looking back, it probably was already the fibromyalgia acting up.
When you say it like that, it’s almost like it wasn’t meant to last long. What happened?
I suffered another two miscarriages, including twins who were born at 7-months of gestation in 2010. They were born but did not weigh enough or were strong enough to survive. It was a very dark time for me.
I am so sorry Sophie. I did not know.
I don’t advertise it. And I don’t let it define me anymore. But for a while, I felt like the world around me was crumbling down. I had nothing to live for. The pain from the fibromyalgia was getting worse and worse as I became recluse in my apartment.
I stopped going to work. I stopped seeing friends. I stopped talking to my family. I absolutely isolated myself for fear of getting hurt again. The pain was unbearable.
When I took my pain meds, I felt numb. So after a while, I started taking pain meds when my heart and my thoughts were hurting, not just my body. And it worked. The pain would go away. And I dove deeper and deeper in this black hole. I wanted to feel nothing.
Did anyone around you realize that you were going down a slippery slope?
No. no one. I had alienated all the people who had once cared about me. I was by myself and I wanted to be by myself.
You must have felt very lonely.
Yeah, I guess. I realize that now. But at the time, you know, I was 24 and I had the entire world figured out. Everybody was out to get me, and I was the only one who knew what to do.
So if I understand correctly, you started abusing pain killers and you became addicted to them?
Yes. I was addicted to opioids and benzos (benzodiazepines). I had a prescription for all the pills I took, but it just wasn’t enough. Some days I would sell this pill to buy that pill, and the next I’d sell that pill to get this pill.
In my neighborhood at the time, all I had to do was walk down the street and I would find buyers and dealers in a hot minute.
I don’t really want to dwell on the past, but how did this relate to your fibromyalgia?
I think that if I had not suffered from fibromyalgia, none of it would have happened. Or at least not that way.
Realistically, if I weren’t in constant pain, I would not have been prescribed pain killers in the first place. But I’m not blaming fibromyalgia for my drug addiction. That would not be fair.
Clearly, I’m the one who made the decision to take the drugs in quantities and frequency greater than what had been prescribed by my doctor.
Last question on the subject: how did you free yourself from the drugs?
One day my aunt came over to see me. She took one look at me and knew right away that I was in a bad spot.
She tried helping me, by setting me up with a doctor I could trust, and taking me to various appointments here and there. She set me up with a methadone clinic, but I was not ready to follow the program seriously. I ended taking methadone on top of my regular drugs of choice.
On the fifth anniversary of my twins’ deaths, I overdosed. My aunt was with me and recognized the symptoms of overdose right away.
She took me to the ER and from there I was placed in the APS (Acute Psychiatric Services) Emergency division of the hospital on a 48-hour psych hold.
With the weekends and holidays, I spent over a week there and that was quite the sobering moment. The people around me all had one thing in common: deep sorrow.
I could tell traumatic events had happened to them too. We had group therapy, and that was an eye-opener for me.
When I got out, I told my aunt I was ready. She took me to the clinic every day. The withdrawal symptoms were bad.
Add to that the fact that I cut out all pain killers at that time, and my Fibro symptoms were flaring up like crazy!
It was a tough three months. Most days I went to the methadone clinic kicking and screaming, but I was lucky to have my aunt by my side to push me and encourage me. I’m now clean from both oxy (oxycodone – an opioid drug) and benzo.
Thank you so much for sharing your story. I know it couldn’t have been easy. And congrats on being sober!
You’re welcome. The point isn’t for people to feel sorry for me. I just hit rock bottom and I had no choice but to get back to the surface, otherwise I was going to die.
Do you think drug addiction is a problem among Fibro Warriors?
Honestly, yes. The worse part of this though is that most people have no idea they’re drug addicts. The pain we get from Fibromyalgia is like no other.
It’s not comparable to anything else I have ever been through. The simple fact that the pain goes on and off, that it goes from one spot to another and that some days are bad and some days are worse… it’s a constant battle.
So we try everything we can to make the pain go away. And very often, that means prescription meds. So yes, I think a lot of us take meds to calm the pain, and we end up being dependent on them.
Do you think dependency and addiction are the same?
No, but yes. When you depend on a drug to get through to the day, there comes a point where you can’t do without it, and that’s when you’ve tipped over into the addiction.
When you explain that you had fibromyalgia, how do people around you react?
It depends, but people can be incredulous. They don’t want to believe me, at times, because there is really not much positive publicity around fibromyalgia. I pushed my family away when I fell into the drug cycle.
Now I constantly have to justify myself to them. There is always that suspicion that maybe my pain is not as bad as I describe it, you know. I always feel like they’re thinking I’m trying to score harder pain killers, or more benzos or something.
What do you do for pain management?
I’ve tried more natural ways to tame the pain, but it hasn’t worked very well for me. Acupuncture was nice but just because I felt relaxed.
I take methadone daily, so I’m very limited as to what I can take wit it. Tylenol (acetaminophen) is good for minor to mild pain, and it doesn’t interact with a lot of my other meds. I do a lot of hot packs.
Cold packs don’t do a thing for me. I take allergy meds sometimes, like Benadryl (diphenhydramine). It helps me fall asleep at night if the pain is too severe. I just don’t like the idea of getting hooked on another type of pain killer right now, so I keep it simple and sweet.
And that’s enough?
Realistically, some days are worse than others. But I’m in a good place mentally, so that helps. I’ve found that when I’m depressed or down or whatever you want to call it, I hurt more.
My kids are a huge motivation. They keep me on my toes! I move a lot when I’m with them, so it keeps my body going.
Have you met a lot of people who have fibromyalgia?
It’s weird, but I can’t say I have besides you! It’s almost like people don’t want to say it out loud.
That is so true! It’s almost like people have been put down too many times when they have shared their struggle, and now they don’t share anymore. This way, no one mocks them. What do you think could be done to end that stigma?
I don’t think there are enough resources out there that offer advice on fibromyalgia. It’s the black sheep of the medical field. People don’t know what it’s like or what it truly is, so we don’t talk about it. So I guess to end the stigma, we need to speak up about it more, and maybe even louder!
At thefibrowarriors.com, that’s what we’re trying to do! What do you think about support groups online?
I love the idea of support groups! I have to say, after we met I looked over the website and the Facebook group, and I’m impressed.
Reading over the articles on the website, I can tell you guys care. And on Facebook, I like that Fibro Warriors are free to say whatever is on their mind.
I have yet to find one negative comment on there! And we need that. We need that sense of community, of belonging. I live what you guys do!
Oh stop! You’re making me blush! Kidding aside, what would you tell someone who thinks they may have fibromyalgia, but isn’t 100% sure?
Do your research, read articles and ask questions in support groups. Don’t be shy, ask your doctor and if your doctor dismisses you, ask again. If you are told it’s definitely not fibromyalgia, ask them what it is. And if you don’t get an answer, it may be time to get a second opinion.
If you could tell one thing to your loved ones about how you feel, what would you say?
I just want my family, and particularly Brett and the kids, to know that I’m not trying to be difficult. I know it is hard to deal with my fibromyalgia sometimes, especially since I don’t take pain killers. But I really need you guys to love me for who I am, fibromyalgia and all.
Have you found that parenting with fibromyalgia is difficult?
Honestly, I’m pretty sure parenting is never a walk in the park! But with fibromyalgia added to the mix, it gets tricky sometimes. I know that there are things I wish I could do, but can’t.
I can tell you’re about to ask me what, so I guess I wish I could go camping with the boys for example. But I can’t because I can’t sleep on the ground.
And I wish I could do things like drawing with sidewalk chalk with them, and play tag for hours, and maybe crawl around the play area at Xxxx (worldwide fast food chain).
But you know what? I am blessed beyond words to be able to do the things I can do with them. I can’t live my life wishing for things I can’t do! So instead, I choose to be grateful for what I have.
Fair enough. How about being pregnant while having fibromyalgia?
Now that comes with a whole new set of rules! Nah, I’m just kidding. Being pregnant is wonderful, actually. I don’t know what it is, but I feel good.
It’s almost like I’m less tired and less sensitive to certain pain triggers. I’ve heard somewhere it could be the hormones are easing the pain. I’m not sure. But whatever it is, I’ll take it!
I bet! And now, a couple of questions I ask everyone. First, if you had to choose a motto to live by, what would it be?
Never give up! I almost gave up, and it was a long way back to the right path. So don’t give up, and keep advocating for yourself.
What would your Fibro Warrior name be, and why?
Haha! That’s a tough one! I don’t know, right off the bat!
I won’t leave you alone until you answer, so you’d better figure it out!
Haha! Well, I’m not sure. Let me think (Sophie looks at Tyrone and Antwan, who are still playing with Brett). Ok, I think I got it! My Warrior name would be Xena.
You remember that TV show in the 90s, about this princess Warrior who was friends with Hercules? Yeah, I want to be her! Obviously, I’m a warrior. But I’m definitely a princess too, just ask Brett! Haha!
Sophie, it was a pleasure speaking with you! I really appreciate you taking the time to answer my questions, but above all, I appreciate that you shared your story with us, even the difficult bits. Thank you!
You’re welcome! I am glad I was able to meet up with you. If my story can serve as a cautionary tale for one person, then it’s well worth it.
As I said goodbye to Sophie and her family, I felt lucky to have met them. Sophie is a great inspiration. The interview was not scripted, so the questions just kind of asked themselves as we spoke.
I was quite saddened by Sophie’s history of miscarriages, and I did not even think about asking her if she thought it was related to her fibromyalgia. Maybe one do you guys know and can answer that in the comments?
The other surprise was the history of drug addictions. That was not expected and I was quite unprepared. I tried to remain focused on the fibromyalgia but it was clear that for Sophie, the addiction and the fibromyalgia were intertwined. If you have additional questions you think I should have asked, I welcome your feedback.
Being part of The Fibro Warriors community is a big deal. Like Sophie noted, we don’t judge. I would love the opportunity to ask all of you guys a few questions about your personal fibromyalgia journey.
If you would be open to sharing your story, please email me at firstname.lastname@example.org and I will send you some information on being featured on the website.
Until then, keep fighting the good fight, fellow Fibro Warriors! You’ve got this!