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What are the Benefits of Getting a Hypermobility Diagnosis?

SnowbelleSnowbelle Member Posts: 38 Courageous
edited March 2019 in Disabled people
Hi everyone,
I was wondering if there are any people with any of the Hypermobile Spectrum Disorders who could share with me if they found any benefits from being diagnosed?
I have Myalgic Encephalomyelitis & Postural Orthostatic Tachycardia Syndrome (which often occur with hypermobility) & I'm pretty certain I meet the criteria for Hypermobile Spectrum Disorder, but don't meet the criteria for the specific types.  I have suspected for a few years, but haven't had a chance to bring it up with my GP yet & wasn't sure if there would be a benefit of having it looked into or not? (I already know I have the autonomic complications, and regularly seem to need physio but usually privately due to NHS waitlists)
I'd really appreciate your experience.  Thanks!

Replies

  • Ami2301Ami2301 Community champion Posts: 6,994 Disability Gamechanger
    Hi @Snowbelle I am unsure however a member of our community may know and will be in contact with you soon :)
    Community Champion
    Disability Gamechanger - 2019
  • elnorabearelnorabear Member Posts: 1 Listener
    Hi Snowbelle,

    I have been diagnosed with HSD and am being tested for EDS. I have found that it's easier to explain to people when you've got a name for something. Other than that I've not had much benefit, all the forms and things that have to be filled in are about symptoms rather than diagnosis but it's nice to have an explanation.
  • SnowbelleSnowbelle Member Posts: 38 Courageous
    Thanks for your reply @elnorabear.  Having a name when explaining things is definitely a good advantage.  Sounds like it's worth looking into, but I can wait until I can get to the doctors a bit more easily & don't need to use the appointment for something more urgent :) Thanks.
  • deejay2038deejay2038 Member Posts: 20 Connected
    Yes, have hypermobile Elhers Danlos type III I saw a pain specialist and he dx me.  Benefits? If you ever need really strong pain medication (opiates) having the dx will help. The type I have the amount of pain doctors have to treat scares them.  If you already have the dx it will not be near so difficult to get pain control as and when you need it.  You have some double joints, I assume?
  • SnowbelleSnowbelle Member Posts: 38 Courageous
    Thanks @deejay2038.   I definitely don't have as obviously double-jointed joints as other people do, but do have a degree of hypermobility & have associated problems (autonomic dysfunction, ME, gastric disturbance etc).  (My thumbs can both bend back to touch my wrists, & I could bend forward with both hands flat on floor.  And my spectrum of movement in my hips & ankles is hypermobile.  I frequently get one or more of swollen knees & ankles, trochanteric bursitis, plantar fasciitis, tennis elbow etc. )
  • deejay2038deejay2038 Member Posts: 20 Connected
    elnorabear  it is my understanding the HSD ad EDS are at this time both recognized to be pretty much the same thing. In that sense having the  EDS dx won't change very much as they are both recognized for being the same thing.  This article I was looking at recently, as you can see, EDS and HSD are all lumped together.
    https://www.ehlers-danlos.org/information/managing-dislocations-and-subluxations-in-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/
  • deejay2038deejay2038 Member Posts: 20 Connected
    That's enough to fit the profile @Snowbelle! I too after 18 years in a wheelchair can still stand up and put the palms of my hands on the floor. The thumb thing I can't do but my elbows and knees are very obviously double jointed.  If you only had one thumb that touched your wrist that is enough to suspect if you are having problems. The loonie assessor from the DWP thought my flexibility was a great sign of physical fitness, lol sheesh
  • SnowbelleSnowbelle Member Posts: 38 Courageous
    Thanks @deejay2038.  Having a face in the hand moment when I read about the DWP assessor!  If only!
  • WaylayWaylay Member Posts: 910 Pioneering
    I'm thinking the same thing, @Snowbelle. Before my chronic pain began I was extremely fit, so although I had a lot of physical problems, I think the amount of muscle I had held me together. Over the past few years my hip has started to sublux, and I can't seem to get any help for it because they just want to focus on my chronic back pain (which I've had years of treatment for). In the past few months my shoulder keeps subluxing when I lie on that side. I can't do the thumb thing, but I can touch the ground, my elbows and knees extend too far, my neck does freaky things, etc. Would I maybe be able to get some specialist physio if I got dx'd?
  • Tra7cyTra7cy Member Posts: 33 Connected
    Hi, I was diagnosed with hypermobility joint syndrome plus RA and l5 pars defect. I thought I might have EDS but there are many differences. I was double jointed but not now the arthritis has kicked in, my joints don't feel like they're mine. Trying to explain HJS is more difficult than trying to explain how much pain you're in, unless you're covered in blood dripping from wounds nobody gets it 😢 I hope you do well in all you do. As always delicate hugs xxx
  • Zebra88Zebra88 Member Posts: 55 Courageous
    I was diagnosed with EDS type III, 4 years ago. I haven't found any positive reasons to have the diagnosis as the symptoms affected me in the same way they do now, before the diagnosis. People assume I have arthritis or fibromyalgia because they know little about hypermobility. My rheumatologist sent me on a fibromyalgia awareness course as he couldn't find any specific treatment paths for EDS. My pain therapist also continually talks about overcoming her fibromyalgia even though I have mentioned 5-6 times I do not have fibromyalgia I have chronic widespread pain, yes, but EDS is the cause. It makes no difference! The only thing I did find is that when I was diagnosed formally by genetics, they put me on a register of diseases and made recommendations for my children to visit genetics when they are older.
  • Zebra88Zebra88 Member Posts: 55 Courageous
    Also forgot to add last night if you suspect you have an illness and may need private health insurance in future I would take out the insurance before having investigations. I was never in a position to take out such cover as a younger person before I was diagnosed. Now I can't take out any kind of health, life or travel insurance because I have a diagnosed condition. My children will also be in the same position when they're older whereas my friend was diagnosed after his parents had already taken out Bupa 
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