Isopod

316d

i have a few questions:
how do i go about getting a diagnosis for whatever hyper mobility thing i have going on?

how do i tell my doctor that my body is and has been weird, and in nearly constant, low level pain for as long as they’ve known me without making them think i’m a hypochondriac?

where do i turn to for help/support/pain management/prevention?

Essential Hypertension

Hypermobility Syndromes

Generalized pain

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  • spoonfull

    316d

    My rheumatologist (a doctor who deals with pain disorders) was able to diagnose me as having a hypermobility spectrum disorder by examining my joints according to the Beighton scale. Basically they look at how mobile certain joints are (knees, elbows, thumbs, etc) and whether those joints hyperextend. After he confirmed that I am hypermobile, I asked my rheumatologist to refer me to a genetic counselor, who assembled a clinical diagnostic team, and this team provided me with an appropriate diagnosis (EDS type 3 in my case). This process took a long time (over two years of constant reaching out to the genetic counselors, who were the most disorganized and unhelpful folks ever, and a bit rude when diagnosing me to be honest). It is discouraging, but keep pushing for answers and you will get them eventually. If your doctor thinks you are lying about being in pain, reassert yourself and insist that they take you seriously. If they refuse to follow up, request that they document your symptoms and their refusal of treatment, then find a new doc if possible. A pain specialist or rheumatologist would probably be better to talk to about this than a GP. Online is a great place to start your journey, there are lots of gentle exercises and stretches you can do to strengthen the muscles around your joints to prevent hyperextending too much. Try not to overstretch or do “party tricks” (I can subluxate some of my joints at will, and my doctor told me to NEVER do this again as it makes it more likely that those joints will have issues in the future). Epsom salt baths, topical analgesic balms, massage, acupuncture, medical marijuana, yoga, and medication are just a few of the ways you can manage pain—what works for one person may not work for the next. Something that is important for everyone, though, is creating a support network of people (online and IRL) who can help you and encourage you when you need it. I hope you find the answers and relief that you are looking for soon❤️

  • Speedyk

    307d

    Show them!! Make your limbs do the weird things that they do and they will see that you aren’t making it up. Trust me

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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