river last edited by
If you have been diagnosed with dysautonomia along with your CFS, feel free to post here about that experience and how it affects your illness management
If I remember correctly, dysautonomia is part of the ICC and CCC diagnostic criteria for ME/CFS, and naturally a lot of people with CFS get a diagnosis of dysautonomia at some point. Unfortunately, I've found that once you have a diagnosis other than CFS that could plausibly be used to explain most of your symptoms, doctors like to pretend the CFS doesn't exist.
My personal experience leads me to believe that our dysautonomia is caused by the (still undiscovered) underlying disease process of CFS, and has a different mechanism to other forms of dysautonomia. I spent much of last year extremely sick because a capable and well-meaning doctor believed the results of a single tilt table test over my years of subjective experience, and prescribed a medication that would have been clearly contraindicated, had he listened in the first place.
When specialists tell me they're out of their depth or can't make a diagnosis because my dysautonomia doesn't fit any of the patterns they have been trained to recognize, I want to scream at them "OF COURSE IT DOESN'T, BECAUSE I HAVE CFS!!" I can't wait for the day when we know enough about this illness to classify it as a disease instead of a syndrome, so that doctors will start seeing it for what it is instead of something to be replaced with a "better" diagnosis ASAP.
@river Hi there! Sorry to hear of your awful experience... I was dx with dysautonomia a decade or so after my ME diagnosis - but symptoms of course preceded the dx
You may have seen this already, but sharing the link as it gives me some hope
river last edited by
@Trae great article, thanks for sharing! I hadn't seen it before. I really hope that something positive comes out of the covid research, for all of us.
I told about 6 different Doctors including 4 Specialists that I kept having to lie on the floor or I would faint before one Neurologist listened to me and said “tell me more about this”. Had a tilt table test and my BP dropped to 40 systolic. Finally, I could prove that I wasn’t exaggerating- “ That was a bit dramatic “ they said. Although on medication, I find dysautonomia one of my most debilitating symptoms. That is a great article and makes sense that the brain stem is involved.
@Loulou , I’m glad you finally crossed paths with a specialist who took the time to listen and then act. The common story so often shared of multiple medical professionals dismissing symptoms is incredibly frustrating. Patient centred care is often unfortunately hard to find.... and when you’re unwell being your own advocate is beyond exhausting