Pain amplification syndrome- how can I support my son? — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.

Pain amplification syndrome- how can I support my son?

willz37 Member Posts: 2 Listener
edited July 2018 in Cerebral palsy
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


  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,545 Disability Gamechanger
    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!

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    I wonder if there's any guidance our lovely chronic pain advisor @ClaireSaul could offer here?
  • ClaireSaul
    ClaireSaul Member 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 Saul
    Chronic Pain Advisor
    [email protected]
  • Mindyois
    Mindyois Member Posts: 3 Listener
    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!
  • Waylay
    Waylay Member Posts: 971 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?
  • April2018mom
    April2018mom Posts: 2,872 Connected
    My only piece of advice is to listen to him. Let him get everything off his mind. 
  • Mindyois
    Mindyois 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! 

  • Mindyois
    Mindyois Member Posts: 3 Listener
    Hi @willz37 my first post was meant for you, but I forgot to put your username at the top. Sorry.
  • Waylay
    Waylay Member Posts: 971 Pioneering
    Thanks, @Mindyois ! I've put it on my list of things to ask my GP.


Complete our feedback form and tell us how we can make the community better.