Hi! Has anyone else got complex regional pain syndrome (CRPS) or similar? — Scope | Disability forum
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Hi! Has anyone else got complex regional pain syndrome (CRPS) or similar?

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arsenalman42
arsenalman42 Community member Posts: 5 Listener
hi everyone . 
im not sure if anybody will read this but ive had the scs procedure done and im still struggling with on going nerve damage as a result of a broken leg . i had the implant fitted and wondered if anyone on here is going through the same crps syndrome or similar ? 

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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hello @arsenalman42 and a warm welcome to our online community, how are you doing?

    I'm sorry you are going through such a rough time with the nerve damage. How are you coping emotionally? Would you be able to tell us a little more about the scs procedure you've had done? Is that spinal cord stimulation?

    I'm sure others can relate to your situation on our community, and I've renamed your thread to help people spot it and moved it to our 'Chronic pain and pain management' category if you want to take a browse there and see if others posts marry with your experience.

    Take care and have a lovely Thursday.
    Online Community Co-ordinator

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  • arsenalman42
    arsenalman42 Community member Posts: 5 Listener
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    hello @cher_scope and thank you for the reply and renaming my condition . 
    to be honest im not coping emotionally or physically . 
    to answer your question yes ive actually had the spinal cord stimulation implant which is basically two electrodes inserted in my spinal cord . 
    along with a battery that sends nerve signals down my leg . 
    i was really hoping to find anyone that suffering from nerve damage . 
    i honestly dont know how to use this site yet as ive just joined . 
    thank you . 
  • Broreb1981
    Broreb1981 Community member Posts: 160 Courageous
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    Hello I have just been diagnosed with CRPS, 2 weeks ago so I'm at the beginning of this journey. I just wanted to let you know that I understand some of the issues you have with this diagnosis 
  • arsenalman42
    arsenalman42 Community member Posts: 5 Listener
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    hi @Broreb1981
    may i ask how yours started ? mine was a result of a botched operation on my leg 
  • Broreb1981
    Broreb1981 Community member Posts: 160 Courageous
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    Mine started after rupturing a ligament in my ankle after going over on it last July. I really wasn't expecting the diagnosis, I thought it might just need a clean out and the ligament fixing so it was a bit of a shock
  • arsenalman42
    arsenalman42 Community member Posts: 5 Listener
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    i realise this is a difficult time but how does this affect you ? 
    if you dont mind in sharing of course ? 
  • Broreb1981
    Broreb1981 Community member Posts: 160 Courageous
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    I feel angry that's its happened to me and worried about the future. Its stopped me living my normal life and some days I'm really down. I'm trying to be positive and I need to adjust to the diagnosis and try to accept it and live with it not fight against it
  • arsenalman42
    arsenalman42 Community member Posts: 5 Listener
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    lets hope your condition gets better and i hope it does . 
    i know how debilitating it can be ... not just for you but also people around you . 
    ive been low before but nothing like this . 
    as mentioned i had an implant fitted which is supposed to send nerve pulses down my right leg .it does work but doesnt completely take the pain away . 
    i cant go a month without my toenails falling off and even a sheet cover or duvet cover can hurt when it rests on it . 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    edited February 2023
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    It sounds really difficult that you have been low before but nothing like this @arsenalman42.

    Would you feel comfortable sharing a little more about what "this" looks like for you at the moment?

    I am hearing that, despite having an implant fitted, it doesn't completely take the pain away. It seems like you just can't shift that pain no matter what you do  :(
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Kay89
    Kay89 Community member Posts: 1 Listener
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    Hi, I'm new to this and have crps , how long have you had your scs for?. I've had mine for just over 2years, but I'm having it taken out as I do not get on with it and I find that it does not help me at all. 
  • kc1978
    kc1978 Community member Posts: 16 Connected
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    Hi, 
    I was diagnosed with Functional Neurological Disorder and Complex Regional Pain syndrome. I'm wheelchair bound and in pain constantly. Even slightest touch can cause severe pain, including water when I Shower. However the battle to get any support has been difficult. I was told by a pain specialist to stop pain killers, and to accept that I would be in pain, and be happy I was able to live. When I asked if  thought this is living a good quality of life, I was told we will refer you to a psychologist who will help you accept and cope better. 
    The new NOT very "NICE" guidelines on chronic pain have just left GP's not ability to treat individual circumstances. 
    It's a one size fits all approach, which focuses on the socio-medical problem of previous over prescribed opiates. 
    Many things in the guidelines such as acupuncture are not available. Psychology support is limited and huge waiting lists. Will only focus on your behaviour around pain, not the causes. I found the links and some advice useful. However when you aren't able move for pain, it's difficult to live life and just accept it.

    I was given antidepressants, pregabalin for nerve pain. Was given a patch, which I became severely allergic to.(which actually helped!) Had to stop, but they then refused to give any other analgesia.
    Eventually following over 1 year of battles, and opinions I am on oral opiates, my pain , sleep, mood are improved, if not gone, better. 

    My advice to anyone is speak openly to health professionals about the impact pain is having.
    Don't let them tell you what you should do, feel, expect.

    Pain is what experience,  and the impact to you is real. 

    If I hadn't of fought, it was overwhelming and I could not have carried on. I was lucky to have family and strength. A physiotherapist who listened and a doctor who treated me as an individual, and not as NICE recommended as a class of patients who should all be treated the same.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @kc1978

    I am so sorry you had to fight so hard to get the support you need. I'm also so sorry you were told you'd just have to "live with it". Infuriating. I hope the support you are getting now continues to help improve your situation <3
    Hannah - She / Her

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  • tbird
    tbird Community member Posts: 18 Connected
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    Hi. My journey started 6 years ago when I got up off of the sofa and something 'popped' in my right arm. I went through a variety of tests and lots of physio, to be told that I had cubital tunnel syndrome. CRPS was mentioned but not diagnosed. My physio fought my corner and I had ulnar nerve release and transposition of the ulnar nerve in Sept 2021. Fast forward to 18 months ago and I began to get the same symptoms and issues in my left arm. Finally saw a pain consultant September last year and finally diagnosed of having compressed ulnar nerve in both arms, along with CRPS in both arms. I have taken all the nerve pain meds and now on the last one I can be prescribed for nerve pain, Nortriptyline. 
    Every day is a pain day and the more I try to do the higher the pain level! 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    @tbird Thank you for sharing your experience with us <3

    I'm so sorry that you are in pain every day. Has your GP or specialist referred you to the pain clinic before? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Broreb1981
    Broreb1981 Community member Posts: 160 Courageous
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    I've started mirror therapy but I'm not sure it suits me, I have schizoaffective disorder and autism and my brain doesn't seem to understand this form of treatment. My foot is still very painful, goes ice cold, purple, bright red and like sunburn and a new issue, cramp and spasms. I still can't walk without crutches and wear a boot because I can't wear a shoe or bend my ankle.
    I just want to go back to normal
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    I would ask to be referred to the pain clinic. They are specialists in that area and can hopefully help you there. I'm sorry you do not feel like the mirror therapy is helping. Can I ask, is this a course of therapy or can you tell your therapist and try a different technique? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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