Lost

Being recently diagnosed with EDS Type III has been great as many things do add up. However, I feel slightly left to it now, and more questions are popping up. Over the weekend I experience extreme pins and needles from my hips downwards, after reading online it can occur with HEDS however, I just wanted to double check. But I didn't know who to go to as my GP knows very little about the condition and have subsequently been discharged from Genetics (at SCH), just wondering who people go to answer their questions, that have been brought up since diagnosis/discharge.

Thanks in advance

Kirsty X

7 Replies

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  • Hi there. frustrating as it sounds, I too found that you get diagnosed and think - great I'll get support etc and nothing happens. My advice is to do a search online for a consultant that fits what you want to know, the most local if possible and get a referral from your GP. Then go from there as far as getting physio etc. I would really recommend getting a referral to the Pain Clinic, or Pain Management Service at your local hospital too to help long term and short term. With EDS despite being around so long, consultants don't; really understand it, and so it is a condition that you have to be proactive as regards managing and living with. I didn't find physio helpful as I am not immobile, but I have excruciating pain some days and rely on pain meds, heat pads and just gritting my teeth! Good luck x

  • Thank you for that. And yeah, I'm going to make an appointment with my GP about some other things anyway, so I'll discuss it with her too. Thank you x

  • I can totally relate to your post, stretchygirl. This UK organisation has helped me a lot...perhaps you know its website already...but in case not:

    hypermobility.org

    I too have a lot of nervous system issues, but I have infant onset systemic lupus, sjogrens & a bunch of secondary conditions as well as EDH

    XO🍀🌻

  • I have actually looked on this website but thank you! Hope everything as good as it can be for you X

  • Glad you know that hypermobility.org: I think it's wonderful...as is this forum & support group.

    Yes, things are a lot better for me now the medical establishment are recognising the complex set of issues making up my health profile. They basically stone-walled me for 50-something years. Then a brilliant NHS prof rheumatologist recognised my systemic lupus and we uncovered the infant onset diagnosis...over the past 4 years other diagnoses fell into place. Now my 'pie chart' is relatively fully known. Meanwhile my big set of multisystem NHS clinics have established effective treatment plans which are helping me feel better than I have since my 20s

    I do regret my lonely, painful years in the NHS wilderness because they've taken a high toll, but they were also definitely character forming...and during those decades I learned A LOT about complementary therapies and lifestyle management, which continues to stand me in good stead. Whatever the reasons for your neuro symptoms, once the cause/s are recognised & in treatment, I'd suggest you consider looking into: the Alexander technique + tai chi + pilates. Maybe you've done so already? In my experience, these approaches can all help even more once the ins & outs of our individual version of health issues is more fully diagnosed...and this sort of 'body work training' can be particularly helpful in cases like ours.

    Wishing you all the very bext🍀

  • Up until.now my daughter has been under paediatrics but she is 18 shortly and will leave their care. We asked who will coordinate her care and we were told 'no-one' as eds is neither rheumatologal or orthopaedics. The gp was the only reference point.

    We have a string of gp's that come and go with many locums. Not ideal.

    We did visit a locum gp yesterday though as she subluxed a vertebrae a few months ago and is still having dumb ness and pins and needles in her legs and hips.

    He was fabulous! Spend 30 minutes discussion eds and re-diagnosed hee with eds 1 and 3 not just 3....

    He is sending her for x rays of back and hips and referring to the specialist unit at Sheffield.

    I really hope you get some answers. EDS is so hard for anyone to fight alone.

    Have you access to Face book? There are loads of support groups on there. We actually met up with 9 zebras last Saturday for a meal through a FB group.

    Good luck x

  • Thank you! I just feel as though just because the illness is invisible and not commonly known, that no-one truly knows how to help us! Yeah I do thank you, I'm on a couple of the pages :)

    Hope your daughters appointments/referrals work out for her.

    Thank you X

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