When I started this blog in 2016 I was suffering from massive daily pain, fatigue, brain fog and was desperate for relief. The word fibromyalgia had been thrown around in my early thirties and came up again ten years later. I fought with this idea mostly because of how it was an ambiguous “syndrome”. Even after accepting the diagnosis, I still searched for something more concrete, more rooted in some physical lack or malfunction. Something that could be treated and relief could found. Any suggestion that it was it was not real, or stemmed from a mental health issue, enraged me to no end. But here I am, my fibromyalgia is in remission and I attribute that remission to a few things I now understand, all related to my mental and emotional states.
Disclaimer: I spent years trying to find a physical cause for my pain going to doctors and specialists and I am in no way encouraging newly diagnosed people to abandon medical investigation. This is for the people who have turned over every stone, taken every blood test and found no cause or relief. I am also not saying this applies to all people, this is just my experience.
Here are a few things you may also want to consider if you have been diagnosed with fibromyalgia:
I. Trauma – The first thing I think all people diagnosed with fibromyalgia should consider is PTSD or any collective trauma that has not been worked through in a way that allows a release in the mind, spirit and body. It’s 2023 and there are so many helpful authors writing about how trauma is stored in the body. I personally did not like “The Body Keeps the Score”, but it is popular one. I preferred books written by Peter Levine, he has quite a few and they were less triggering for me. I wrote about my PTSD here. For me, the initial event was the first domino that led to another trauma, which led to another, which led to another. Each time I would minimize, blame myself and/or disassociate, lock it in a box and try to forget. Everyone experiences trauma, not all trauma leads to PTSD, and the common consensus is that your future issues with trauma may be related to how you are treated, how you treat yourself in the aftermath, and if there is a proper release or nervous system reset soon afterwards. If you have chronic pain in your body that is ambiguous, maybe it’s time to gently explore the internal maze of yourself, find help through books, online community or a licensed professional. You are worth it and if it’s not related to your pain, at the very least, it will help you love and appreciate yourself a little more.
II. Autism Spectrum – Another avenue I think people diagnosed with fibromyalgia should consider, especially if their fibro involves major sensory components, is autism. If you have ever labeled yourself an HSP (highly sensitive person) and have fibromyalgia, you very well may be on the spectrum. I am and it never occurred to me until last year after I read a book called “Divergent Mind”, written by a woman, highly intelligent, capable, accomplished and autistic. Since discovering my own neurodivergence, I have learned ways to manage my “overs and unders” which has helped me immensely. I reduce overstimulation and I find/allow ways to stimulate sensory input that I personally need. All those years of “generalized anxiety” was not really anxiety at all, it was as I suspected, sensory overwhelm and nervous system disregulation. It didn’t need to be medicated, it needed to be accommodated. Every autistic mind is different and the spectrum is not linear, but there are many tools we can use to accommodate ourselves. This has greatly reduced stress in my mind and body, which has certainly contributed to my remission. Autism in adult women does not necessarily “look” like anything, but it certainly “feels” like something internally. Look into it, if it speaks to you, keep looking into it. If it doesn’t speak to you, then you are probably not on the spectrum. I know there is some current discourse about the validity of self diagnosis or even that people with cptsd can feel similar. Do your research and if you find relief in accommodating yourself using tools that help people with autism, the point is moot.
III. Emotional Abuse – This last component for me has only shown itself in hindsight. If you would have asked me four years ago if my marriage was good, I would have lied and told you it was fine. I was miserable, but instead of identifying why, I was conditioned to blame everything on myself. When I tried to get the smallest emotional need met, I would be made to feel demanding and unreasonable. Intimacy and connection were purposefully withheld. Gaslighting and compulsive lying were so common, I began to question myself, my recollection, my discernment. He pretended to be a doting and caring husband…meanwhile he was cheating on me for years. The emotional abuse was so subtle, so pervasive in the mind, so crushing to my self esteem, to my understanding of myself. When you have chronic pain you often feel so lucky to have someone who “takes care” of or “puts up” with you and your “broken” self. This sense of guilt tinged with gratitude can mask abuse, and abuse can imitate and intensify brain fog, confusion, forgetfulness and a low sense of self reliance or trust. I don’t know when it became emotional abuse, but as soon as I caught him cheating and pulled back the curtain, a wave of clarity and calm washed over me and those cognitive issues haven’t returned. I imagine no longer dealing with this aspect has also relieved tension in my mind and body.
Today, despite the immense stress of working through betrayal trauma, pending divorce, heartbreak (my dog Pearl is dying of thyroid cancer 💔) and uncertainty in my life, I am mostly pain free and have been for almost a year. I have tools that help me cope with sensory issues, I exercise and journal my feelings daily, I’m in therapy, I dance, I create, I laugh, I love. I’m a little depressed, tired of the roller coaster of emotions, but I am a better mother, sister and friend. I understand so much more about myself and my relationships with family and friends and lovers. I am no longer locked up in the idea that I need to suppress who I am, what I’ve been through or what’s happening in my life.
All of this is to say…yes, it could actually be cumulative emotional stress in your mind, body and spirit. Fibromyalgia is a syndrome, a collection of symptoms of no real discernible cause. And so because of that, it varies so much between different people. My trauma, my highly masked autism, grief and being with a shitty partner, all manifested in very real prolonged chronic pain. Your fibromyalgia may have nothing to do with any of these things…but it can’t hurt to make sure. I spent so much time looking for the right supplements, diet and lifestyle changes to help me, I wish I stumbled on these three aspects sooner. Unlocking buried boxes, understanding my neurodivergence, identifying my needs, my limitations and prioritizing myself. Unfortunately, you can’t force yourself to be ready for these things, divine timing comes to mind here.
Of course, I’ve had remissions before and life comes at us fast and hard, so I am not saying I won’t ever experience my particular brand of fibromyalgia again. I can only hope my new understanding and the bigger picture view of my whole self, keeps it manageable. For me, I know where to look now, tension and stress in the mind and heart will always be my first line of attack and I guess therapy is just going to be a lifelong expense.
As always, thanks for reading. I wish you much peace, love and clarity.
Love,
René
Periwinkle Pursuits 