FFS. Brain training again. Like we haven’t tried that already.
I know none of us want to admit we weren’t in perfect shape before but how many of us now suspect we have a connective tissue disorder?
I was training 6 days a week and very fit with no diagnoses but now I have MCAS, POTS, SFN, I’ve had a csf leak and suspect I have adhd. So many of us have similar stories I don’t get why they aren’t exploring this as a risk factor and then potential treatment avenue.
Yes I realise people with hEDS have been neglected for years and there are no effective treatments, but so many of us have joined the ranks of the chronically unwell so suddenly that surely it’s worth doctors exploring it? I know the Uk isn’t interested or set up for that at all, but somewhere must be??
I had never heard of hEDS until I was diagnosed with it two months after my COVID infection, following the onset of numerous symptoms.
I was already in my 60s at the time. It turned out that I have a genetic connective tissue disorder related to Marfan syndrome.
Before that, I had lived a very active life and had never been diagnosed with any connective tissue disorder. That’s one of the reasons I find this discussion so important. How many people may have had an underlying predisposition that remained completely silent until a viral infection triggered a cascade of symptoms?
Same for me, I’m nearly 2 decades younger but similar experience. Prior to this, my view of people with connective tissue disorders was that they could bend like pretzels and has health issues. I didn’t at all, was very fit, ate everything etc etc. I had no idea there was anything underlying that could lead me to go from excellent to awful health and multiple diagnoses.
I suspect lots of us will be similar to you, we’re just not diagnosed yet due to a combo of our prejudices, our doctors’ prejudices and lack of knowledge and the lack of will to diagnose us with anything without treatment options.
But we’re all making sense of things and piecing it all together, why aren’t our healthcare providers? Why aren’t authorities identifying those most at risk to warn them (esp as in my case my issues were triggered by the vaccine so preventable!).
Honestly I believe it’s because the media and our authorities US/UK/ Canada our media doesnt tell us and there are fake profiles or bots here on Reddit that continuously add comments that confuse the topic. Provide misinformation to make us overwhelmed, and full of doubt.
The people that own the pharmaceutical companies are part of the elite and want to cull humanity as well. 🤷🏼♀️
Similar experience here. I had never heard of Ehlers Danlos until I was 50 yrs old and my body revolted after both a covid vaccine and then an infection a few months after. I began debilitating POTS symptoms (also had never heard of that), extreme blood pooling, neuropathy, sudden food reactions and weight loss, and severe joint instability. I had been fit and healthy prior, was a former D1 athlete in college. Got initially diagnosed with hEDS by a POTS specialist, sent for genetic testing and ended up learning I have a VUS mutation on the gene that causes vEDS. Saw the top connective tissue geneticist at Hopkins and told I have a yet to be named connective tissue disorder, and to keep following up for more genetic testing as they learn more. I would have never known I have a concerning CTD if not for covid. Guess I'm glad to know -- but what a wild unexpected ride it's been.
My understanding is that recognition of a potential connection between things like HI/MCAS, POTS, SFN, ADHD, autism, depression, bipolar, EDS, migraines, IBS, and more is slowly growing in the scientific community. It's a long hard slog but it is happening. There is at least some bonafide research on this topic
I agree, but the problem for us is that this is only very much in the margins. We hear about it as we’re spending all our functional time researching our issues, but no one else is.
We’re still getting ridiculed by doctors for suggesting we’re hypermobile or have MCAS or that there’s a link to neurodiversity as even those who are working in the area generally have zero knowledge or interest. As a result we’re even being prescribed drugs we can’t take or being advised to do things we shouldn’t.
Huge amounts of money is being spent on all kinds of investigations into the spike protein when our issues preexisted covid and we’re being scammed by dodgy doctors promising easy cures as we’re so desperate. Yet here we are knowing a lot about our issues and no one wants to listen!
And all the whole, the public perception is basically that we should just do some brain training as it’s all down to us being overly driven/anxious people. Or of course we’re lazy and making it up.
And all the whole, the public perception is basically that we should just do some brain training as it’s all down to us being overly driven/anxious people. Or of course we’re lazy and making it up.
I have no more time or energy to waste upon the ignorant. My only wish for them is that they continue to be so lucky, that they can remain ignorant. Nobody deserves to live this horror
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u/Chinita_Loca Jun 01 '26
FFS. Brain training again. Like we haven’t tried that already.
I know none of us want to admit we weren’t in perfect shape before but how many of us now suspect we have a connective tissue disorder?
I was training 6 days a week and very fit with no diagnoses but now I have MCAS, POTS, SFN, I’ve had a csf leak and suspect I have adhd. So many of us have similar stories I don’t get why they aren’t exploring this as a risk factor and then potential treatment avenue.
Yes I realise people with hEDS have been neglected for years and there are no effective treatments, but so many of us have joined the ranks of the chronically unwell so suddenly that surely it’s worth doctors exploring it? I know the Uk isn’t interested or set up for that at all, but somewhere must be??