Chronic Fatigue Syndrome, Chronic Pain, Depression, Disability, Fibromyalgia, Fibromyalgia Blog, fibromyalgia warrior, Health, Ketamine Infusions, Spoonie

My Journey with Fibromyalgia, by Amy Duitsman

Fibro Warrior, Amy Duitsman, suffers from Fibromyalgia. Amy has added her face and story to Faces of Fibromyalgia. I am so grateful that she has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Amy by following her on Instagram.

Faces of Fibromyalgia Fibro Ramblings My Journey with Fibromyalgia Amy Duitsman Northern Illinois USA

THE SCARS YOU SHARE BECOME LIGHTHOUSES FOR PEOPLE WHO ARE HEADED FOR THE SAME ROCKS YOU HIT

Jon Acuff

This is one of my favorite quotes and is the reason I want to share and be open and honest about my Fibromyalgia story, to help others. You are not alone!

In my opinion my fibromyalgia started after my nasty car accident in 2008 that totaled my new car. Took me two years to get a diagnosis, going from Dr to Dr, specialist to specialist. It was very scary, but I remember when I got my diagnosis from my rheumatologist in 2010, I was just so relieved to finally know there was a name for what I was going through and it wasn’t in my head, but little did I know how my life would change so drastically because of my diagnosis and everything it entails. Prior to my diagnosis, I was an incredibly strong and serious athlete, but I lost all that after the car accident and the fibro. Of course, I tried physical therapy, then water therapy, myofascial therapy, massage therapy, acupuncture, and doctor after doctor to try to get some help to manage the pain and fatigue. The only thing that helps remotely was the Lyrica, but after one month of taking it, I gained 20 lb. and it did not stop there. I chose pain relief over gaining weight. I chose wrong. I am now dismissed by nearly every doctor due to my weight and having a diagnosis of severe depression.

I had to push so hard to get through undergrad, internships, then grad school, more internships, and then getting into the social work workforce that I didn’t realize what I was doing to my body. Well eventually it came roaring to a head. Being a therapist is my passion, but there’s a lot of stress involved in crises and day-to-day work especially while working in the foster care system. My last job that I loved, I pushed so hard to hold on to my job that I lost my health, all of it. It broke my heart to have to leave knowing that I wasn’t sure if I’d ever be able to work again. It’s incredibly terrifying that the future I’ve worked so hard for, is up in the air. I had to quit my job nearly two years ago. Can’t believe it’s been that long.

Since then, I reinjured my herniated disc in my lower back, I have degenerative disc disease, and my doctor believes I have Lyme disease, but I have not received an official diagnosis yet. These last two years, I have tried a lot of different treatments. The most major being 3 to 5 hour, very costly, ketamine infusions. But even after paying out of pocket for the infusions, it didn’t help, nothing helped. A month later was when I injured my back again. I ended up being bedridden and have been pretty much been bedridden since then. I have been able to walk some around the house with a cane, but due to that injury and the fibro combined, I cannot function anymore. I’m constantly dismissed by doctors and it makes continuing to fight very, very hard. 

As mentioned, I lost my ability to be an athlete in any sense of the word, but I also lost my hobbies. I’m an artist. I love to craft. I love to make anything and everything. I used to love to paint, but my favorite was making ceramics on a wheel. I can’t do any of my crafting now except for what I can do in bed, which really isn’t much. I cannot sit up for much time at all as I have an injured tailbone. My fatigue and weakness are so bad that walking is incredibly difficult.

I miss biking, I miss hiking, I miss cooking, I miss going out with friends, I miss showering independently, I miss my life, and I miss feeling like me.

This year I finally got my medical marijuana card, and it has helped drastically, especially with my sleep. I used to get at most about 3 hours of sleep. Now it’s in chunks, but I get about 6 to 7 hours sleep a night. I did not want to turn to medical marijuana, but pain management doctors left me no choice as they weren’t willing to help me manage my pain or medications in any sense, other than removing them.

I have lost so much due to fibro and my other injuries and illnesses. Every friend I had before my diagnosis has disappeared. Though, I am lucky enough to be close with my sister and to have gained such a great best friend in undergrad, who sticks with me even in the hard stuff and over a large distance. Through chronic pain groups, I have also gained a very great friend. It would be a lot harder to make it through without her. She has so many of the same struggles. That’s another reason why I want to share my story. I know that sharing my struggles might not be a happy story, but it validates others’ struggles and lets them know they’re not alone in this fight.

Having fibro has drastically changed my life in so many horrible ways, but it has also given me a better perspective on life and what really matters. I no longer care about frivolous things, I care about the people around me, the people I love, my pets, and I focus my attention on what really matters in life, my health and well-being. I do believe that my diagnosis of Fibro in the beginning, pointed me in the direction of becoming a therapist. While I think I would have gone down that path regardless, my fibro diagnosis gave me insight into the idea that …

I don’t have to experience something to know that someone could be going through something horrible and it may not look like it on the outside.

Just because we cannot imagine something happening doesn’t mean it doesn’t happen. While going through my transition into fibromyalgia, I never knew that a body could feel that horrible. I had always been strong and healthy, and could push through anything. Through fibro, I realized that unimaginable things really do happen. It opened my eyes, and I became open and compassionate to those people who shared their stories with me. In that sense, I am grateful for my experience with fibro.

I really struggle with a lack of purpose in my life, however, I like to think I have made an impact on some people in pain groups that I am a part of, and on my nieces. I have two nieces that live far away from me. They are my heart and soul. They keep me going even though I only get to see them twice a year as I can’t fly anymore. I love doing art projects with them. I love seeing them grow and play. I hope I can help bring them up to be warm and compassionate to those around them. They were here recently and were playing with my cane, pretending to be me! It really blew my mind that they really don’t see in terms of pain and struggle or fat and thin. They just see those who care about them and aim to be like them. Later this made me cry because I would do anything to protect them from having to go through the pain I’m going through. And they’re pretending to be me! I wouldn’t want them to have to be me, but this is something we don’t get to choose.

My advice for someone newly diagnosed would be to keep an open mind, try lots of different things to see what will work for you, keep your body conditioned the best you can because really when you don’t use it, you really do you lose it and it’s much harder to get back than to just keep it. Another thing I would suggest is gaining and keeping a strong, compassionate, support network, both inside and outside of the pain community. I speak from personal experience when I say, it’s incredibly painful when no one in your support network is willing to be with you at rock bottom. That type of grief and betrayal is soul crushing. We need supportive people to keep fighting this every day, it’s so important. Also, probably most importantly, (saying this to myself too), self-love and being compassionate, kind, and patient with ourselves and our bodies is absolutely paramount. I struggle with this everyday but it’s so important.

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