Odd title, right? But admit it, it picked your curiosity!
I should clarify a couple of things right off the bat. First, the below is me interviewing myself. That’s weird. So I’m going to pretend it’s all good, and roll with the tide.
Second, I probably should explain why I’ve accepted defeat. No one wants to hear that defeat is even an option! And really, it is not an option at all. Here is the deal. For years and years and years I was that person. You know the one.
The person who looks at you with disdain and incredulity. The person who thinks she knows everything and certainly more than you. I was that girl who would smirk and walk away when someone would tell me they had fibromyalgia.
I’m not proud of it now, but it is what it is and that was my reality.
Look, I am not one to pretend things did not happen. Instead, I would much rather affirm my own stupidity and grow from my own mistakes. If along the way I can open the mind of one or two people in the process, then it is all worth it.
So why saying that I accepted defeat? Well, when I was first diagnosed with fibromyalgia, it was kind of a shock. One of my nieces had been diagnosed a few years before, and I truly thought it was just a way for her to get attention. Yes, I have apologized profusely to her for being so condescending.
Much like the majority of the population, I was 100% ignorant about fibromyalgia. So when I was diagnosed, I had to really take upon myself to not crawl into a hole and waste away in shame.
I had to accept defeat.
I had to surrender to my diagnosis and finally accept that fibromyalgia was not only real, but a major pain in my ______ (fill in the blank)!
So now, knowing that I was one of the nay-sayers for so long, here is my story. Read it and share it. Shake your head in disbelief at my stubbornness and ignorance. And be glad that you now have a story you can show your incredulous friends and relatives – the story of someone who, like them, thought you were making it up. Until karma bit me in the butt.
Without further ado, here is my interview, by me.
Tell us a little bit about yourself.
I am a 40-year-old mother and wife. I grew up in France, where my parents had a small general store in a rural village. From the moment I knew how to count, I was put behind the counter during rush times to help out.
I had a very happy childhood, and my parents set a hard-working example for me. They worked from 5:30 AM to 8:30 PM every day except Sundays, when they worked 5:30 AM to 1:30 PM.
From them, I learned that complaining was not an option, and when you hurt, you just push through because the world is not going to wait for you.
I met my husband while I was in Law School in 1995. We got married in 1998 and moved to the US in 1999, on our anniversary. My husband grew in a working-class neighborhood in Minneapolis, Minnesota, so that is where we moved.
Our oldest daughter was born in 2002, and in 2004 we moved to a small town in rural Minnesota. Honestly, I missed seeing cows. Don’t laugh, it’s true! I grew up with fields and cows and sheep everywhere.
We had chickens, and rabbits, and pigeons and ducks and geese in our backyard. I missed all of that tremendously. My husband finally got tired of having to drive me every week-end to see cows, so we moved!
Our youngest was born in 2006. A whole new world happened in front of us. She has some special needs, both physically and mentally, so we had to reevaluate how things were organized for us. I started working from home and made a career for myself in the Mystery Shopping industry.
I am now juggling several work-from-home jobs, including Mystery Shopping, Writing, Editing and Social Media Management.
Sorry, that wasn’t a little bit, but hey, too late now…
When did you first feel pain or discomfort that could not be explained?
I was a kid. I was kind of the sickly one in the family, always catching whatever other people had. I would look at someone with a cold across the room, and I’d catch pneumonia! I was in and out of hospitals at a young age, but nothing seemingly related to fibromyalgia at all.
When I was 12, I felt a sharp pain in my back and I couldn’t figure it out. The doctor said it was some sort of vertebrae that was out of place and said I should wear a soft neck brace for a while. That didn’t exactly help, but whatever.
I had a lot of issues with sprained ankles, rib problems (I now know costochondritis was the culprit), back issues, etc.
As the years went by, and after having two kids, I was increasingly tired and always in pain. I had no clue what was going.
Did you ever suspect it could be fibromyalgia before you were diagnosed?
Honestly, no. Not at first, at least. I was that one despicable person who thought fibromyalgia was all made up. I wasn’t about to admit that I may be suffering from fibromyalgia!
I always thought it was something else. Don’t get me wrong, there are other issues I have to deal with. But realistically, everything goes back to fibromyalgia. I truly believe all of my diagnosis are related to or aggravated by fibromyalgia.
After a few years of feeling yucky all the time, I got a call from my Mom. She said she had been diagnosed with fibromyalgia and she did not know what it was. As the good daughter I am (hi Mom!), I researched fibromyalgia to see if I could help her understand what was going on.
The more I read about it, the wider my mouth opened. I was stunned. Then that little light bulb lit up above my head, and I was like, “Mom! Why do I have to be like you all the time?!?!”
Everything I researched described most of my symptoms to a T. At that time, I started to strongly suspect that I had fibromyalgia as well.
Who initiated the diagnosis: your doctor or you? Did you share your research with your doctor?
I have this amazing doctor who is very open to her patients’ intuitions. She is always happy to listen and research with an open-mind. So when I shared with her that my Mom had been diagnosed with fibro, and that a lot of symptoms mimicked what I was experiencing, she looked it up.
The next time I saw her, she had read up on it and knew all about the infamous trigger points. She tried those trigger points on me, and I literally jumped off the table! She told me that she had no doubt I had fibro.
To confirm her diagnosis, she sent me to a neurologist. That doctor was not a very nice person, and she snickered and told me fibromyalgia was not real. Back to my regular family doctor I went, with no diagnosis confirmation. I was pretty down, I must admit, because I didn’t know what to think anymore!
My doctor told me that she was certain I had fibromyalgia. She said that regardless of what the neurologist said, she would treat me for fibromyalgia.
To answer the question, I suppose I initiated the diagnosis and my doctor embraced my research and was very receptive.
How did your family react when you told them about your diagnosis? How about your friends?
My family was very supportive. My husband told me he knew nothing about it, but he always thought it was a diagnosis you got when nothing else was found. My first reaction was harsh. I felt like a train hit me and my heart sank. My own husband thought I was making this up!
A couple of days later, he told me he had looked it up, and realized it pretty much described me at 150%. He apologized for his initial reaction and assured me he would support me throughout the journey.
I’m not going to lie: some days, he seems to forget. On those days, he gets aggravated with me. But that’s OK. I don’t expect anyone to always know what is happening in my body and in my mind.
Understanding goes both ways: it would be terrible to put myself ahead of everyone else all the time. I am not perfect (I know – shocker!!) and I too forget stuff about my husband’s everyday life – for example, I don’t always know when his shift at work starts or ends as it varies each day of the week.
Never mind that it has been the same weekly schedule for four years. I still can’t seem to remember! Therefore, how hypocritical would it be for me to think he would remember every second of the day that I have fibro? Especially since symptoms come and go, and then return in totally different spots!
As for my friends, I remember the exact day I told them. It was Halloween and we were gathered like every year to go Trick or Treating with our kids. I was in the middle of a bad flare-up, and I sat it out.
The tradition is some parents walk around while others visit, and then come back to the house and switch roles. That year I was around the bonfire all night. When one of my friend’s friend asked why I wasn’t walking around with the kids, I said I was not in a good shape at the time.
My husband interjected that I had recently been diagnosed with fibromyalgia and I was in pain. Three or four of my friends ganged up on me to tell me how fibro wasn’t real. One of them actually laughed at me in front of everyone. I felt humiliated and powerless.
My husband threw on his shining armor and climbed on his (metaphorical) white horse to come to my defense. I was moved to tears when I heard him educate our friends.
He admitted that he didn’t believe in it either before I was diagnosed, and he offered to send them some information about fibromyalgia. That was a very important moment for me.
What is your most sensitive trigger point?
It varies, of course! My elbows and my knees are very sensitive. Some days, it feels like I can’t even bend my elbows. My knees hurt all the time. To the point where I cannot kneel down. Ever.
My upper rib cage hurts too, but I can ignore it more since I don’t need it to walk or move my arms. I just need it to breathe. Wait a minute… I guess I’m just used to it… Dang…
How do you cope with the pain on a daily basis?
I try to ignore it, because otherwise I would be constantly crying.
In all honesty, I do take prescription meds to help alleviate the pain. But I also rely on tips and tricks I have learned over the years.
There is your good ol’ hot and cold packs if the pain is mild.
I have a bunch of essential oils I like to use. I like both the aromatherapy aspect of things, and the physical benefits of some oils. For example, peppermint oil with camphor will give you a cold then hot sensation that is extremely relaxing (or hot then cold, depending on how you mix your oils!).
I like massages, but it costs a bit of money. Also, I can’t handle deep massages because it hurts more than it helps. And I can’t lay down on my stomach for too long because my lower back locks up and I can’t get back up.
I have to make sure the therapist knows about my conditions before he/she starts. I only go to one person now as she knows me and is really good. Plus she lets me do half-our massages instead of full hours, so it’s definitely softer on my wallet!
I have tried acupuncture before and it was quite the relaxing experience. Now I’m not sure if the acupuncture crude itself helped, or the fact that I was alone in a room with quiet music for 20 Minutes. Two kids, two cats, one dog and one husband – it doesn’t happen that often at home!
The other few things I have tried all happened together. I moonlight as a server for a local café a couple days a week. Next door, there is a lady who sells essential oils.
One day, I walked in and she offered to show me a couple of techniques to help. She opened my chakras and rebalanced my chi. Don’t ask me what it means or what it does or how she did it.
She just put some essential oils on my head and across my back, and placed her hands a couple of inches above my skin. There was some breathing technique involved on her end, and she was done. It could be my imagination, but it felt really nice and I totally relaxed. Was it psychosomatic? Maybe. But in the meantime, I came out of there relaxed and happy.
That same lady made me step on a vibration board. It’s like a step stool but it vibrates at different speeds. It gave me this weird massage from my ankles to my neck.
You know those little things you find at the dollar store that vibrate and are supposed to be massage tools? It was like that, but all over. And that. Was. Nice.
And the last thing she did for me, she called it MPS Dolphin Neurotism. Ok, I know. Weird name. And I agree that at first, I was wondering what kind of voodoo that was. But you know what? It worked. I mean, that stuff WORKED.
She placed two separate acupuncture-like pens with conical ends and either side of my spine and some electrical wave was passed from one to the other.
I felt a slight buzz on my back and at times, when she went over sensitive areas, it almost hurt. But after she went over three times down my entire back, it felt incredibly loose and relaxed. Kinda crazy, right?!? I’ll do more research on that, but I would say that it helped overall.
What makes your pain worse?
See, pain is a complicated animal. Sometimes it’s tame, and sometimes its wild instincts take over, and it goes nuts.
It’s hard, really, to pinpoint what makes the pain worse. Some days, walking will trigger the worst flares in my knees. Other days, I can walk miles after miles and be just fine. What makes it hard, is that you can’t really ever plan anything. You just never know when the pain will rear its ugly head.
I would say that more than what makes my pain worse, I can manage what will not make the pain show up. And yes, that would be the usual clichés: plenty of rest, don’t overdo it, ask for help, bla bla bla.
Easier said than done…
What makes your pain better?
All the self care methods I described above tend to make things better. They don’t always work, but there is a common theme: when I take the time to take care of myself rather than taking care of others, it tends to help.
Focusing on me for a change allows me to reconnect with me and re-center myself.
It’s pretty much a mental health thing. Taking me-time is crucial. It permits me to find calm within the storm – look at that, another cliché!
Would you mind sharing your other diagnosis if you have any?
Oh boy! Here goes the laundry list!
First, let me tell you that I don’t like this. I don’t like feeling like I’m just a collection of weird conditions. It makes me feel weak. And I’m not weak.
Who came up with these questions anyway?!? Oh wait… it was me… dang it…
Ok, so I have fibromyalgia, ankylosing spondylitis, costochondritis, COPD, chronic rib subluxations, restless leg syndrome, plantar fasciitis, narcolepsy, sleep apnea, high blood pressure, neuropathy in my knee, depression, fatty liver disease, gallstones, and a titanium rod in my leg. Oh, and morbid obesity. I think that’s it. I may have forgotten a thing or two…
Have you ever met someone with fibromyalgia? Were you able to share ideas?
I have. And I have mixed feelings about it. It seems like we have such little outlet at our disposition that every chance we get to talk about Fibro with someone who understands, we just jump at the opportunity and talk about nothing else.
I want to have meaningful, positive interactions with other Fibro Warriors. I want to know you for you. That’s what I love about thefibrowarriors.com community. Their isn’t any whining going on. I mean, I don’t mind talking and sharing ideas and what not. But I’m not looking for pity. I want real answers to issues that affect me on a daily basis. Does that make sense?
Have you found it hard or easy to talk to people about fibromyalgia? Why it why not?
That’s a good one. Whomever wrote those questions is a genius. Just kidding! I just wanted to say that!!
Anyhoo… Hard or easy. It totally depends on who you are talking to. Some people are just so close-minded that it just doesn’t even pay to try to explain to them what is going on. You know the type.
Those are the people who look at you snidely while smiling a fake compassion smile. I don’t waste my time with people like that. Nope siree. Not worth my emotional energy. So I guess it is hard to speak with people like this.
But more often than none, people genuinely have no idea what fibromyalgia is. Zero. Zilch. Nada. Rien. They just don’t know. I mean, they “know” what they’ve heard on TV and read in magazine at the dentist’s office. But that’s about it. And in my experience, people who have not had the opportunity to learn about fibromyalgia are very receptive to actively hearing you.
When I find people who just don’t know but are open to knowing, then it is easy to talk about fibromyalgia. At that point, it can get difficult to make me stop talking! I just want people to be educated, not scared.
What do you think could change the view of the public regarding fibromyalgia?
A revolution! Nah, not really. But close.
We need an information revolution. We live in the most powerful age to date. We have tons of information at our fingertips. It is simply amazing what we can find online today.
What I don’t understand is why do people not use the resources they have such easy access to? I mean, if you don’t know something or if you don’t understand something, go online and look it up!
Right now, thousands of people are looking up the lyrics to the newest pop song, or the birthday of their actor. These exact same people are incapable of looking up information pertaining to something that affect the LIFE of another human being.
They can not find it in themselves to have the decency to learn about actual, serious issues. Knowing the hometown of every members of your daughter’s favorite boy band will do nothing for you, nothing for your kids, nothing for anyone. It is inconsequential and unimportant.
So what could change the way people at large think about fibromyalgia and Fibro Warriors? A shift in our culture that would place the well-being of hour fellow human beings at the most important place in society, instead of idolizing people we will never meet and who could not care less about us.
Ok. Off my soapbox.
What do you hope to get out of TheFibroWarriors.com – the website and/or the social media groups?
I have great hopes with our community of Fibro Warriors. I love reading everyone’s comments on the website, and the posts on the Facebook group brighten my day!
What I hope to take away from the website is actual, useful advice I can use. Too often, I read articles and while in theory, it all sounds fine and dandy, I can’t help but think that the writers have no personal experience with fibromyalgia.
So I get annoyed with myself, thinking that maybe I’m a snob. But then I realize that I have every right to expect real advice and tips and tricks from people I can trust.
Thefibrowarriors.com has been just that reliable source of information and advice I have always wanted. I am proud to be part of this community, and I can only hope that it will continue growing as we welcome more and more Fibro Warriors!
What advice would you give to someone who suspects they have fibromyalgia but don’t know for sure?
Look, there is no miracle cure or magic powers involved. If you suspect you have fibromyalgia, get it formally diagnosed.
There are some very objective criteria that can be used to diagnose fibromyalgia. While knowing you have Fibro will not make your symptoms go away, it will give you closure.
Fibromyalgia is a life long affliction. And while that is not a fun prospect, knowing that your symptoms are caused by fibromyalgia will end the questioning and the wondering. You will not have to ask yourself ever again why you are about to fall over from being so fatigued you can’t function anymore.
If you suspect you have fibromyalgia, do your research. Chances are, if you are reading this, you have already started your research. Present your evidence to your doctor.
Your medical professional may not have asked you the right questions yet to diagnose you with Fibro. There is nothing wrong with guiding your doctor in the right direction.
Join our support group on Facebook. Meet people who understand what you are going through. You are not alone! Good luck and if you need help navigating the world of Fibro, don’t hesitate to ask!
What advice would you give to someone who has been recently diagnosed?
There are only a few things that are as devastating as hearing that you have a life long illness that cannot be cured. It can be controlled at best, but even then, it does not take away all your symptoms.
But you know what? You got this. You are strong. You are smart. And you got this.
You have found the most understanding and caring support group I have ever found to date. Take advantage of that! Ask questions, take in all the advice you can, and use the tips that make sense to you.
Talking to your loved ones may not be easy, and you may be greeted with cynicism and denial. But that is OK. Because you’ve got this.
Take care of yourself. Do not, ever, underestimate the power of “me time.” You need it!
And always remember: you live your life for you, and no one else. So really, the only person you need to convince that fibromyalgia is real is you. From personal experience, you will be your toughest critique and your most incredulous opponent. Don’t be too hard on yourself. You rock!
If you could tell your relatives how you really feel, what would you say?
I would love for my family to understand exactly what I am going through.
I would tell them how I feel like I got hit by a train yesterday and my entire body is sore.
Doing my hair is a chore because I can’t keep my arms up in the air for more than a few seconds at a time without my muscles giving out.
I’m not lazy. I don’t want to stay on the couch and look like you cannot get any type of reaction out of me. I am that exhausted. It’s not that I don’t want to do the dishes, but standing over the sink makes my entire lower back cramp up and I can’t walk for hours after that.
I know the dog is asking to go outside at 2 AM, but I cannot physically get out of bed in time to let her out, so I’d rather not even try.
I’m not morbidly obese because I don’t want to exercise. I can’t exercise because I am morbidly obese. I don’t find anything good about my weight. But I am not able to work out. I am barely able to work. No way I could hit the gym!
And yes, I am depressed, so what’s one more chocolate bar? I mean, I’m already obese, right? So it won’t make any kind of difference anyway.
If I were to speak to my husband and my kids directly, I would tell them this: I love you guys. So, so much. I appreciate everything you guys do around the house so I won’t have to do it. It means so much. And I also know that it gets old to have to deal with me and my various medical conditions.
I just hope you understand that I’m not doing any of this on purpose. Or more accurately, I’m not not doing any of it on purpose! I need your continued understanding and support, even when it’s hard for you. Especially when it’s hard for you, because that means it is that much harder for me too.
What is the one sentence you would consider a motto to live by?
One sentence? Seriously. One sentence. Who can do that?!? But OK, I’ll try.
My motto would be: You are worthy.
How awesome so that? And how often do we forget it? So there: YOU are worthy.
What is your Fibro Warrior name?I don’t know what in the world I was thinking when I wrote those questions!!
My Fibro Warrior name would be: Fibro Crusher! Because you know what? I’m not going to beat this thing. Nope. I’m going to crush it!!
So I guess this concludes the list of questions I somehow devised a while back. I bared a lot more than I had anticipated, and I can tell you that it is quite hard to get emotionally naked like that! It took me a few days to complete this interview of me by me.
I know we are all different people and we all have different experiences. I would LOVE to answer any question you may have. You can comment here or on the Facebook group, and if you tag me, I’ll see the comment or question and I’ll get back to you.
If you feel so inclined, you can share your story with the Fibro Warriors community, email me at firstname.lastname@example.org I will send you the list of questions and your story will be published on the website. You even have the option to remain anonymous!
It feels good to know that you guys now know my story. I feel like it will be easier for us all to relate to one another.
Keep up the good fight, Warriors! You guys are awesome!