Can't write too much currently as hands hurt. Fortunately, naproxen and codeine, plus massage gun on hands, are poggers.

Back in 2023, we requested an assessment for EDS. We got a referral, but they solely assessed us for joint hypermobility via the Beighton score assessment 🤦‍♀️

We scored 3 out of 9. You need 5 or higher to be considered hypermobile.

No further tests were arranged for any other types of EDS, and we had no energy to follow up, with everything else happening in our life.

However, over the last year in particular, our pain had gradually increased and energy level had fallen, but we hadn't had time nor spoons to really address those until very recently, where the issues became noticeably worse.

We finally got around to getting past the gatekeepers (it took multiple attempts) to get an appointment. That appointment was today.

We discussed symptoms with a very-empathetic and demonstrably experienced GP today. She listened to how we'd gradually been seeing a decline in our health and discovering how multiple issues tend to overlap, such as:

• Neurodivergence.
• Being trans+.
• EDS.
• ME/CFS.
• PCOS.
• Endometriosis.
• POTS.
• MCAS.
• Fibromyalgia.
• TMD / TMJD.

... as well as our own physical and mental symptoms, as well as close family. (Our sister has PCOS and pretty sure all immediate family are some flavour of neurospicy.)

Based on this, she kindly agreed to a blood test to rule out common connective tissue problems, specifically:

• Complement system
  • C3
  • C4
• Connective Tissue Disease (ANA)

What we didn't expect to learn -- and what she seemed confused by also -- was that when the "specialist" wrote back to our GP about our Beighton score in 2023, it was suggested that further tests should be run to rule out ME/CFS.

Yeah...

We'd say we're surprised, but this is NHS England  

Anyways, we'll try to give some updates if/when we get any. Guess we'll see what the blood tests suggest 🤷‍♀️

#SleepyCattenUpdate #disability #spoonie #NHS #PhysicalHealth #neurodivergent #AuDHD #BeightonScore

Imagine being the kid who could always win at Twister, the one whose fingers bent back like they were made of rubber. Friends might have called you "double-jointed," and it was all a bit of fun. #Beightonscore #collagen #EhlersDanlossyndrome #JointHypermobilitySyndrome #jointpain #looseligaments #physicaltherapy

https://refreshbalance.com/joint-hypermobility-syndrome/

Betrayed by the Beighton Score, and the gaslighting, yes, so fucking familiar.

#hEDS #BeightonScore

https://www.statnews.com/2022/12/12/ehlers-danlos-syndrome-patients-turned-researchers/

#hEDS up #NEISvoid

You can listen or read the #transcript of this episode below, which includes a take-down of the #BeightonScore used for diagnosing (and denying diagnosis of) #EhlersDanlosSyndrome, a discussion of both the 2017 criteria and the new revisions under discussion, as well as #CurrentResearch into #fibroblasts.

The guest is Sabeeha Malek, a PhD student doing biomedical #research into #EDS who also has EDS.

#PatientLed
***

What happens when diagnostic criteria aren’t fit for purpose | The Rest Room #podcast

🔗 http://natashalipman.com/what-happens-when-diagnostic-criteria-arent-fit-for-purpose/

"EDS isn’t necesarily a Hypermobility disorder, it’s a connective tissue disorder. And Hypermobility is just one manifestation of the connective tissue disorder."

@chronicillness