On the outside, Winnie H. looks like any 27-year-old woman: beautiful, thin, tan and well put together. She works two jobs, like any other twenty-something, tries to go to the gym as often as possible, has an enormous library on her kindle and is completing a job certification. However, on the inside, she is in constant pain. Winnie has Fibromyalgia.
I met Winnie at the age of 14. I, like most other teenagers, was full of energy and eager to do anything for fun. I knew that Winnie had some sort of illness, but I never fully understood why she hated giving me hugs or why some days she felt like she couldn’t get out of bed. As I got older and talked more with her, I learned more about the “disease” Winnie had and why it affected her the way it did.
Today, I sat down with Winnie to ask her more questions about what Fibromyalgia was and how it affected her.
How old were you when you realized something was wrong? What kind of symptoms were you feeling?
I was 10 years old. It was after I had my appendix taken out and I figured all of the pain I felt was because of that, but then it started to get worse. The pain got to be unbearable. I didn’t like the feeling of my clothes on my body. I couldn’t let anyone touch me at all. Even when family would try to hug me, it hurt too much, so I’d run away from them. I pretty much avoided “goodbyes” at family gatherings.
To describe the pain…on good days it feels sort of like body aches from the flu. On bad days, it feels like pins and needles, like when you sit on your foot for too long and it falls asleep– that numbness and needle-prick feeling. My legs were the worst back then. Sometimes they’d randomly give out on me.
The pain all over my body would get so bad that it made me vomit or would send me into panic attacks. I didn’t know what was happening or how to handle it!
How long did it take for doctors to diagnose you with Fibromyalgia? Were you wrongfully diagnosed at first?
Before they figured it out, I was diagnosed with Bipolar Disorder, Anxiety, really anything mental because they thought the pain was all in my head or I was faking it. One doctor would say it was one thing and the next doctor disagreed and said it was something else! I was finally diagnosed with Fibromyalgia at 13, almost 14, years old.
What different kinds of tests or treatments have you tried over the years?
I went to many different therapists, like VERY different. One was super peppy and was all like “LET’S COLOR,” and another was just like, “here’s your meds, ma’am.”
I also tried these breathing treatments for awhile at the children’s hospital. It was actually kind of fun though, like a video game. They hooked me up to this heart monitor that was attached to a screen and I’d stare at a tree or build a bridge with my breathing patterns and heart rate.
In middle school, I had to wear a heart monitor for a week because apparently I had a heart murmur too, so that’s really cool. They had me wear this helmet thing too to measure my brain waves or something.
My back doctor wanted to try giving me shots in my spine but I was like, “HELL NAH!” That’s kind of funny though because now my back is where my worst pain is.
I tried a lot of physical therapy and massage therapy. Massage Therapy was my favorite. I also tried hydro-therapy where they change it from really cold to really hot but that was the worst! Extreme cold makes my muscles tense up. I can’t handle temperature changes very well.
What about medications? Did you experience any bad side effects?
Once I was on an antidepressant that made me hallucinate! I saw all kinds of weird stuff. I saw a glowing, blue, f***ing bird everywhere! It swooped down at me once at Walmart and I looked like a lunatic trying to dodge that damn bird. I always tried to laugh it off though.
The thing about medication is that if it has possible side effects, I’m probably going to get them. I guess I’m really sensitive to meds. Even the antidepressant I’m on now makes me so nauseated that I’ll usually throw up once a day. I just have to try a lot of things to see what works.
The biggest problem I had though, was that I went to like 5 different doctors at once and they never talked to each other. I took so many medications at once that I had these things I’d call “mini overdoses.” I’d be awake but lying there, unable to move or speak, and it was really hard to breathe! Those were the scariest moments of my life. As soon as I came out of them I’d run down to my mom, freaking out about how something was NOT right.
What kinds of medications or treatments do you use today?
By the time I was 18, I was on 22 different pills a day. My boyfriend at the time cheated on me and our breakup gave some sort of wake up call. I decided to go cold turkey on all my meds at once. I was withdrawing so bad that I was hugging the toilet and shaking for what seemed like forever. After that, I chose my own medications.
Now I’m taking a new antidepressant. There’s no “happy pill,” but this one really helps. I honestly didn’t plan on living past 18 years old. I had plans to kill myself. I still have some passive suicidal idealizations, but I want to live now.
Aside from that, I’m now taking Vyvanse, which is usually for ADHD, so it seems weird that I’d take it with Fibromyalgia. It helps with the brain fog, I call it “fibro fog.” I can sort of handle the pain nowadays, but I can’t deal with the fog. I literally have fallen asleep from it, standing up, at work!
“Fibro fog” is where you can’t think clearly or remember anything. It’s like my thoughts are moving through oil in my head. Answering simple questions like “What did you have for breakfast today?” are too difficult. I’d be like, “did I even eat today?” The fog is the hardest thing for me, even though my pain is still at an all time high. I hate it because I need to work; I need to study and think. It’s all too hard to do with the fog.
I also occasionally will take a muscle relaxer. My spine swells and locks sometimes at night and the pain keeps me from sleeping, so a muscle relaxer helps me get to sleep.
How does Fibromyalgia affect your mental health?
For so many years, people told me my disease wasn’t real and people still think that today. It really f***s with me. Even doctors who are educated on the disease have written me off like I was faking it.
I have severe depression. If I go into a bad swing of depression, my fibromyalgia flares up, because my mental health and physical symptoms tie into each other.
I used to have panic attacks that were so bad I’d black out at school and my mom had to pick me up and bring me to the hospital. My anxiety is still very present in my life today, but I struggle more with depression.
Has Fibromyalgia ever affected your ability to live a “normal life?”
I couldn’t get my driver’s license when everyone else did because I was having absent seizures. When my seizures got better and I got the OK to get my license, I too afraid to get it. I was worried that I’d have a seizure while driving and kill a whole family! Fibromyalgia has made me fearful of so many things.
I used to drink a lot to numb the pain. In middle school and high school I’d drink a vodka and orange juice before school even! I continued to take my meds when I drank too. Alongside alcohol, I used to smoke pot a lot to ease the pain I felt.
Maybe this is TMI, but sex is very difficult with Fibromyalgia! Having sex on your bad days is nearly impossible. On your good days, you’re in a lot of pain, but you can still orgasm. Don’t get me wrong, I love sex and still do it! It’s just very difficult to enjoy it as much as you could without Fibromyalgia.
Tell me about why you decided to pursue massage therapy.
I had a massage therapist in middle school and high school named Nina. She helped me through SO much. When she first got me, I would tense up and squeal every time she touched me. She helped me build up a tolerance for physical contact. She also truly listened to me when I told her I was in pain and really worked with me.
One day on her massage table, I looked up and told her I wanted to do what she does and she told me that I could. All of my doctors shot down my dreams and said I wouldn’t be able to do anything. They said I’d be in a wheel chair by the time I was 45. Nina believed in me.
I want to help people that are like me or even older people. One time I got to help a special needs girl who was ready to live on her own and get a job, but she’d never been touched!
I want to help people the way that Nina helped me.
What advice do you have for anyone dealing with Fibromyalgia?
Cry as much as you need to, but make sure to laugh it off.
F*** the people who say your disease is just in your head. It’s real. Don’t let them make you second guess yourself. No one truly knows what you’re feeling except for you. Fight for yourself.
I think the the most important piece of advice I have is to find your support group and hold on tight. If I didn’t have my mom who did anything and everything she could to make me feel better, I don’t know where I’d be. If I didn’t have such understanding friends who supported me and never let me be alone when I was sad, I don’t think I’d be here today. Being diagnosed with Fibromyalgia is not lucky, but being blessed with my support group was the luckiest thing that happened to me.
Winnie H. has been through so many trials and tribulations due to her early diagnosis of Fibromyalgia. Her mother did everything she could for her, but still worried that one day she’d come home to find her daughter dead. Thanks to Winnie’s strong soul, determined mind and loving support system, this inspirational young woman is on her way to change lives. She has overcome the odds and will continue to do so throughout her entire life.
Those of you who are reading this and suffering from Fibromyalgia, know that you are not alone. Your pain is REAL.