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Pain amplification syndrome- how can I support my son?

willz37willz37 Member Posts: 2 Listener
Hi guys I have joined hoping for info more than anything.  My boy had a fall last year and it has left him with pain amplification syndrome basically his nerve endings are misfiring and causing him loads of pain, unable to climb a step or walk  very far   cannot walk at all without a crutch has to have a wheelchair for distance.  I've joined a couple of forums but perhaps we're missing something.  Both my daughter and I have been diagnosed with fibromyalgia and hypermobility. My daughter recently confirmed as having EDS too.   We have asked rheumatologist about my son but he reckons hes not hypermobile despite physio saying hes showing signs and chiro saying hes more hyper mobile than both my daughter and I.   I've tried finding groups or places he can join locally as hes 16 almost 17 and totally isolated has no friends, hasn't been to school since oct half term as hes had constant headaches. So wondered if you guys know of anything or maybe give me some advice of anything I could be doing to help and support him xx thank you

Replies

  • Chloe_ScopeChloe_Scope Administrator Posts: 10,652 Scope community team
    Welcome to the community @willz37 it is great to have you here. It certainly sounds like you and your family are going through a lot. I hope you can get some answers that you are looking for and please feel free to get involved with other discussions about this topic!
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    Scope

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  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    I wonder if there's any guidance our lovely chronic pain advisor @ClaireSaul could offer here?
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hi @willz37
    I also have EDS and chronic pain due to nerve damage which causes similar experiences to your son's.  I just wanted to acknowledge today that I have read your post and i can completely empathise - there are lots of things to respond to and I don't want to give you a quick response!
    So....I am going away to have a think and gather some more info and will come back to you.

    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • MindyoisMindyois Member Posts: 3 Listener
    Hi,
    I suffer from EDS, chronic pain and Crohn’s disease, and like your kids, mine are both hyper mobile, with my eldest also diagnosed with juv. Ankylosing Spondylitis as a child. For the EDS, my advice is to get a referral to St Mary’s in London, as they are the prime specialists in the UK. They will check all of you, and refer you to the nearest hospital with proper experience of dealing with this condition. Most doctors and physio’s don’t have real experience of this syndrome and have ended up causing me more harm than good, so it’s essential you find people who know what they’re doing, and don’t be afraid to change if you’re not happy. As for your son, my personal advice would be to see a Neurologist straight away, as it may be they can find the cause of the pain through scans, and then suggest a way forward. Also, someof the meds I take are called Trazadone, and another Topiramate. They help with the extreme nerve pain that I get and help to relax the muscles. May not be suitable for your son, but poss something similar. I hope that is of some help to you. Best wishes to you all. Oh and by the way the best way to keep the EDS at bay, is to do sports or gym work, and strengthen the muscles around the joints. My EDS didn’t affect me until my forties, when I became less active through working too hard!
  • WaylayWaylay Member Posts: 890 Pioneering
    Interesting, @Mindyois ! I've long suspected that I had EDS (I was told that I had hypermobility by a back specialist in 2008, and I have all the other symptoms), but it didn't start affecting me seriously until my mid-30's, when a back injury abruptly stopped me from engaging in the large quantity of exercises I'd been doing since I was a child. Is it worth getting assessed?
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    My only piece of advice is to listen to him. Let him get everything off his mind. 
  • MindyoisMindyois Member Posts: 3 Listener
    Hi @Waylay,
    i would certainly recommend that you get checked out for EDS, but be aware that the test is not that accurate, so to be honest the diagnosis should primarily be made based upon the extent of your hypermobility plus the additional symptoms you have. There are many different types of EDS dependent on the additional symptoms and conditions that go along with the hyper-mobility, some of which can be treated more easily than others. I hope that is of some help to you. Best of luck! 

  • MindyoisMindyois Member Posts: 3 Listener
    Hi @willz37 my first post was meant for you, but I forgot to put your username at the top. Sorry.
  • WaylayWaylay Member Posts: 890 Pioneering
    Thanks, @Mindyois ! I've put it on my list of things to ask my GP.
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