Quarries & Corridors Profile picture
May 12, 2018 8 tweets 4 min read Twitter logo Read on Twitter
Given that it's #Fibromyalgia Awareness Day in the middle of #EhlersDanlos Awareness Month, let's talk about misdiagnosis.

People with hypermobile EDS or Hypermobility Spectrum Disorder often spend years misdiagnosed with fibromyalgia…

#fibroawarenessday #EDSAwarenessMonth
…I meet people with really clear signs of hypermobility who've been diagnosed with #Fibromyalgia by rheumatology, treated at pain management clinics, or even seen physiotherapy.

None of those professionals seem to know to screen for hypermobility syndromes…

…This is important because hypermobility syndromes have a physical basis for joint pain that can be improved by multidisciplinary management.

Occupational therapy can provide equipment and teach behavioural changes that reduce stress on joints, Orthotics can support ankles…
…even small changes to misaligned feet from orthotic insoles can radically improve pain from walking and standing.

Physiotherapy can improve the stability of joints to reduce subluxations (partial dislocations).

Strategic use of splinting can improve hand and wrist pain…
…When you know hypermobility is involved in the mechanism of chronic pain and fatigue, you can explain other autonomic symptoms like dizziness.

My dietitian was even able to make suggestions that improved my IBS symptoms once we knew that I had a connective tissue disorder…
…So, if your only diagnosis is #Fibromyalgia, like mine once was, but there seems to be something physical going on with your joints…

If your joints are loose and floppy but also clicky…

If you have 'travelling' pain where different joints become crunchy at different times…
…If you have a #Fibromyalgia diagnosis or unexplained chronic pain and fatigue, AND you have any signs of hypermobility…

Give your GP or your Rheumatologist or Pain Management team this resource on Hypermobility Syndromes and hEDS! hypermobility.org/professionals-…

…I do actually have some #Fibromyalgia style pain, my misdiagnosis wasn't completely ridiculous.

But pain management for 'fibro' became a *whole* lot more effective once my connective tissue disorder was identified and we started working on reducing joint subluxations etc!

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