Last Updated on January 5, 2023 by melissanreynolds
2022 was a whopper for my health (think surprise diagnosis and all). I reduced the fibromyalgia symptoms fairly well and created a manageable routine, which included going back to work part-time after my fourth baby.
Enter surprise diagnosis – actually diagnoses…
I was diagnosed with interstitial cystitis. Finally, a reason for why I had to go to the bathroom so often, including during the night. This only happened by a thorough nurse practitioner asking questions that no one had ever asked before.
When my periods resumed after my fourth baby, they were brutal. Worse than what were already considered severe previously. My doctor suspects probable endometriosis (you can’t get an official diagnosis without surgery, which you will hear about in a moment).
And, finally, I found out that I was actually diagnosed with Chronic Fatigue Syndrome (CFS) in 2013 AND NEVER TOLD.
I told you it was a whopper.
In this video, I share a bit about the surprise diagnosis and how I have been reorienting.
It turns out, the Interstitial Cystitis (IC) diagnosis was a bit of a minor detail. The quetiapine helped me sleep and therefore stop going to the toilet all night. I have managed to work on the frequency during the day. Who knows if the pelvic pain is the endometriosis, IC or something else.
The endometriosis has really turned my life upside down.
Finding out that I was diagnosed with CFS connected so many dots for me. For a long time I hadn’t felt that the fibromyalgia diagnosis explained everything. The fatigue was something else. The post exertion malaise and orthostatic intolerance are real issues.
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The book that’s helped
This book, Chronic Fatigue Syndrome, ME: Symptoms, Diagnosis, Management by Doctor Rosamond Vallings has really helped.
This book is written by a New Zealand doctor. One who was practicing right down the road from where I lived for several years. If they had given me my diagnosis at the time of diagnosis, I would have found her book and seen her. My trajectory to better managing CFS and fibromyalgia could have been much shorter.
She mentions low dose naltrexone, pacing, quetiapine, mindfulness, yoga and many of the other aspects of my whole of life management plan. I could have heard of them years ago!
How the surprise diagnosis changes treatment plans
Here’s the video on the treatments that help me the most right now.
While I can’t spend too long on what might have been. I have felt let down by the medical system. It has made me feel all the things.
Where one is told to “push through” when you have fibromyalgia. The advice for ME/CFS is the opposite. Resting and pacing is an internationally recognised treatment for it. It is hard to not think “what if” – what if they’d listened to me sooner? What if they’d suggested one of the helpful treatments sooner? What if they’d referred me to a specialist like Dr Vallings?
Ultimately though, it doesn’t alter my treatment plan too much. However it does arm me with better understanding and compassion for myself. Symptoms and issues I’ve previously had to dismiss as “sensitive old me” are true and proper symptoms. Things like heat intolerance and post-exertion malaise.
As we move into a new year, I am armed with more research, new things to try and a determination to improve. If you’re curious to follow along at a more personal detail, join us in the Melissa vs FMS/CFS Facebook group.