This week we are fortunate to learn about living with Fibromyalgia from our reader and featured writer, Kelsey Harris of Jane Versus Pain
Understanding that as humans we create our own life meanings is important– Jane Versus Pain
My diagnosis: Fibromyalgia, possibly lupus (doctors are unsure)
What were your symptoms?
In mid 2015 I started to develop pain throughout my body. I had just gotten separated from my spouse when the symptoms started. I also noticed that I was much more fatigued than I had ever been. After almost a year of dealing with pain that seemed to be worse and had spread throughout my body, as well as chronic fatigue, I got a referral to see a rheumatologist.
She conducted several tests and I flagged high on Anti-nuclear antibodies (ANAs) which is common in people with lupus. She initially gave me that diagnosis, and then added fibromyalgia on about 5 months later. After a year with no additional symptoms, my rheumatologist downgraded my diagnosis to fibromyalgia only, though we always conduct lupus tests when I go in for appointments.
To date, my main symptoms continues to be widespread body pain. I was also recently diagnosed with a tear of the anterior labrum (hip) caused by hip dysplasia.
How did you know it was something serious?
In mid 2015 I started to notice that I had body pain that was increasingly worse and widespread. I was at the end of a nearly ten year relationship. I was flagged by my work’s insurance company for overusing my sick days. They needed a doctor to confirm a diagnosis in order for me not to have to pay back all ten days I had taken.
Ten is also the maximum days you are allowed to take in a year. As a result, and with the help of my new/then partner, I managed to get a referral to a rheumatologist who initially diagnosed me with lupus after I flagged high on ANAs. The insurance company backed off, and I often go over my work sick days (into short term disability) without a hassle.
After about five months with this diagnosis, my rheumatologist added a diagnosis of fibromyalgia, as not all of my body pain could be attributed to lupus. During this time I found myself very high in anxiety over the new diagnosis and the constant pain I was in. The relationship that I was in then crumbled, and when we split, I decided I needed to start making some major changes. I began physiotherapy, regular chiropractic visits, seeing the naturopath, the massage therapist, and a psychotherapist.
All of this, plus getting into a regular exercise routine helped bring my pain down from a 8-9/10 to a 5-7 (depending on the day). My rheumatologist then downgraded my diagnosis to fibromyalgia only, as I haven’t had any additional lupus symptoms, and the symptoms I have (pain, fatigue, high ANAs) don’t qualify for a diagnosis alone.
Attending all of these additional healthcare treatments allowed me to start challenging my body and mind on a regular basis which has helped me get where I am today.
What steps did you take to cope? or to find acceptance?
For me, seeing a therapist was extremely important in my journey. Learning coping mechanisms, engaging in self-care (related: Self Care Habits for Success) , allowing myself to learn to sit in the pain, and also knowing when to use distraction are all ways I’ve been able to find acceptance.
The naturopathic doctor was also extremely beneficial as that is where I started with mindfulness practices which have also helped tremendously with acceptance, and with learning to be more comfortable with the pain.
What lessons have you learned in your journey while living with Fibromyalgia?
I have learned many lessons along the way. First, it is up to me to be an advocate for my health, and to take care of my needs. Attending things like physio and the naturopath regularly are ways that I am able to do this. Second, I can control my outlook on my illness. I prefer to be positive and optimistic, and do what I can to challenge myself.
While I think that there are times to indulge in being upset or angry, it isn’t the best way to live. Attending psychotherapy, and then making the decision to switch career paths to become a psychotherapist has helped me on this part of my journey. Finally, understanding that as humans we create our own life meanings is important to me.
I started my blog (www.janeversuspain.com) and podcast to help other people who were going through similar emotions and physical health problems I had in the past. I am drawn to existential philosophy in that we are in control in our fates.
Understanding that as humans we create our own life meanings is important – Jane versus PainTweet
What advice would you give to someone struggling with fibromyalgia?
- Be your own health advocate – do what you can to improve your health and seek out additional treatment options
- Don’t give up – be optimistic (yet realistic) about your future and how your life will be.
- Take care of your mental health too – there is a huge connection between the body and the mind, taking care of your physical health alone isn’t enough!
Don’t give up – be optimistic (yet realistic) about your future and how your life will be. – Jane Versus PainTweet
What does living with fibromyalgia teach you that you wish others knew?
My diagnosis has taught me that I am stronger and more resilient than I thought I was. My ex-partner told me we could never travel together because I am in too much pain all the time.
Not only have I done extensive traveling, I pushed myself to my edge (never past it) and had some pretty amazing adventures.
I’ve also got myself into the best physical shape of my life despite chronic pain.
Where can we find your blog and podcast?
The Jane Versus Pain blog is at: www.janeversuspain.com
The Chronically Living podcast can be found here:
Show Jane Versus Pain how grateful you are for her wisdom and advice by sharing this with your fellow spoonies and friends!
Well said Jane Versus Pain, here at Sickly Confidential, you’ve made us feel inspired with how you’ve taken a difficult diagnosis and leveraged it to accomplish things others only dream of. You taught us a lot about living with fibromyalgia. Thank you for sharing your story and we are here to support you and cheer you on in your journey.
If you know someone with an inspiring outlook on living with a chronic condition, rare disease, or terminal illness, we are looking for more featured writers. You can submit their information (or yours) here.
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