Complex Regional Pain Syndrome - where to go for treatment, therapy & what supplments maybe useful?

hengster
hengster Online Community Member Posts: 19 Connected
I have been recently diagnosed with it Complex Regional Pain Syndrome (CRPS). I'd like to know if anyone has received pain management services and therapy from either the Walton Centre and at the Royal National Hosptial for Rheumatic Diseases for Complex Regional Pain Syndrome (CRPS), and what their experience of services and therapy has been like? I am based in London, and am willing to travel to get specialist help for CRPS. The CRPS has come about from having got medial tibial stress syndrome in my left lower leg earlier this year. Following physio exerices, things did not go well and then i was diagnosed with CRPS. This has spread to my lower back and my left shoulder and arm. I am now left without help on how to manage the pain and what therapy i should next do, as the wait to see the pain management specialists is around 2 months in london. I have also been discharged by the muskolotol physiotherapy team in london. I have started hydroptherapy myself just by walking up and down the pool this week. But i am unsure of what to watch out for and what i should not do. I have been told to stop taking ibroprufen since Oct 2019. After reading around online i have put myself on an anti-inflammatory diet as of 2 weeks ago to see if this would help. I also use Holland & Barratt's Extra Muscle Balm CBD and tub this on the afflicted areas, it seems to help alittle. Also, I'd like to know if anyone taken Magnesium supplements and what type of magnesium to help with CRPS? Or any other supplements those with CRPS have found successful for them?

thanks

Rachel

Comments

  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @hengster! Thank you for sharing this with us, like I have said on another thread, @hdeakin has previously mentioned the Walton Centre so I hope she will be able to offer some more information. :)

    Also, this post mentions CRPS which you may find useful.

    I really hope others will be able to give you more guidance and just to let you know that I have merged your duplicate posts. :)

    Have you been in tough with the CRPS UK charity? They have an email address admin@crps-uk.org where you can get in touch to chat with them.

    Thanks again for sharing your story.
  • hengster
    hengster Online Community Member Posts: 19 Connected
    edited November 2019
    HI @Chloe_Scope
    thank you! I left a voicemail with Burning Nights CRPS earlier today., but will also try CPS UK charity!
    Sorry i didnt realise my posts went up twice before and only noticed afterwards! Thanks for merging :)

    Rachel
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @hengster, I hope they get back to you soon. :)

    No problem at all!
  • Gypsysue
    Gypsysue Online Community Member Posts: 2 Listener
    I suffer with dreadful pain in my legs and also keep getting UTI s I have a catheter in my tummy but I keep getting one infection after another and this is so painful 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Sorry to hear this @Gypsysue and a very warm welcome to the community! How are you doing today?
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @Gypsysue

    Good Morning & Welcome it’s great to meet you today.

    Sorry but I have just read a recent post about yourself on this post.

    Yes I have to also catheterise via my belly button “well when it works”

    How are you doing this morning?????

    @steve51