Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Ehlers Danlos Syndrome Type 3

Ehlers Danlos Syndrome type 3 is a condition when the joints are able to stretch/move further than they should be able to, enabling the joint to have an unusually large range of movement. It is a rare condition and not always diagnosed straight away. For some it can be rather hard to live with due to the fatigue it causes and the long-term pain. Having EDS on top of Dystonia, really is not nice. However I still count myself to be extremely lucky as I know some people have only EDS and are fighting a harsher battle than me! There are several types of EDS each with their own sets of symptoms and problems.

If you like more information on EDS please check out the following source

http://www.ehlers-danlos.org/what-is-eds/types-of-eds#hypermobile

EDS type 3 and joint hypermobility syndrome can sometimes be hard for Drs to distinguish between. One of my close friends suffers from Hyper-mobility syndrome badly. It causes her many issues, and she finds herself having to do battle with the NHS constantly. For those of you who would like to a closer glimpse into living life with Hyper-mobility syndrome I suggest you check out her blog  http://livingandsucceedingwithhms.blogspot.co.uk/ .

 

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Comments on: "Ehlers Danlos Syndrome Type 3" (9)

  1. I recently left a comment on how my symptoms are so similar, im have hypermobility syndrome, out whole family are at risk of brittle bone, my daughter has it shes 16 and has hypomobility, my nephew he has brittle bone and hypermobility he is two, hypermobility is a sign of the brittle bone gene, blue in the whites of eyes, maybe worth keeping an eye on it kerry

  2. Erin Boyle said:

    I’m a 14 year old student whom for an independent project is studying hypermobility and depression for EPQ (Extended Project Qualification). For my studies I have composed a survey asking for opinions to help me with my project. If possible, could you share it on you blog or with others? This goes for any conditions related to hypermobility – not just EDS but conditions such as Osteogenesis imperfecta, Lupus, downs Syndrome and many others. If you want to take a look, link is here or email me.
    https://docs.google.com/forms/d/16B488Ge19LK2eIwHydXOWs1cT8JarNLMFQufffw-524/viewform

    Thanks vey much!

  3. smfarris said:

    I also have hyper-mobility syndrome, along with my CD! It makes yoga classes interesting. I found a great teacher, though, who is helping me do yoga without hurting myself bc of the hyper mobility!

    • I love doing yoga and believe a great teacher makes all the difference! My teacher has helped me realise what positions are normal and what are over-extended. A lot less painful and more enjoyable! xxx

  4. Corinne said:

    I never knew this. When I’m at Phys Therapy they stretch me to the point where my legs are so far behind me they always ask are you ok??? Yes, and still barely feel a stretch. I’m just now learning how being hyper flexible isn’t such a good thing. My low back needs 3 fusions and my vertabrae has slipped, my hips are so flexible they can’t keep my back steady. So much for being nice and flexible!

  5. Victoria said:

    Thank you so much! I’ve just read your blog on disabled girls and sex!
    I’ve only been diagnosed with EDS for under a year, already married with children one of which has EDS and is a part time chair user!
    I’m lucky that I’ve never had questions like this but I know she might one day! We also have a son who carries the EDS gene, so he’s, so far, non symptomatic he’ll still have to discuss EDS with his future wife.
    Hope you’re feeling rested and may the spoons be with you xx

  6. Corinne, Exercise is ok but extensive stretching is not. Non-weight bearing exercises are a must in order to develop muscles and strength. Muscle atrophy runs rampant among EDS’ers Once the muscles are strong then gentle stretching is ok. My PT said he had never had a patient like me and he has been a PT for over 20 years. We used to joke about me being “Gumby” because of how I could be stretched so I get it!

  7. kat skarpac said:

    Thank you for your blog. I am a zebra EDS 3, little sister has lyme. Was looking around for info on eye twitching and stumbled here.

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