symptoms of Dercums disease

deeg
deeg Online Community Member Posts: 1 Listener
edited April 2023 in Rare, invisible, and undiagnosed conditions
Wanted to connect with some other people that are going through what I am going through. I’ve had symptoms of Dercums disease about six years plus and was just diagnosed last year. 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi there @deeg and thanks for reaching out last night. To help everyone share their thoughts more easily I've just moved your post over into our Rare Conditions category. I'm not familiar with Dercrum's disease myself, but it's defined as: 
    Dercum's disease is a rare disorder characterized by multiple, painful growths of fatty tissue (lipomas)
    I'm sorry to hear you've been experiencing these symptoms for so long, but it is good to hear that you've been finally diagnosed.

    Can I ask about the current level of support you're getting for managing symptoms at the moment?
  • netti51
    netti51 Online Community Member Posts: 2 Listener
    deeg said:
    Wanted to connect with some other people that are going through what I am going through. I’ve had symptoms of Dercums disease about six years plus and was just diagnosed last year. 
    Hi what a relif to find someone who has the horrible disease,  I have been unofficially  diagnosed with dercums I'm currently waiting to see a specialist for an official, but I feel your pain. Im so frustrated I can't get my doctor to understand how much pain I am in on a daily basis and how its effected my life so much and the things I can no longer do ive always been a fit active person. I'm now at the point where I'm about to quit my job.. 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    Hi @netti51and a warm welcome to our online community, how's your Sunday going?

    Oh heck, I'm sorry you're experiencing the same. It sounds difficult to say the least. Have you spoke with your manager about any reasonable adjustments they could make to help make your working life a little easier, or do you feel it's the right time to leave? 

    If you need anyone to talk to anytime, our community members are here  <3
  • netti51
    netti51 Online Community Member Posts: 2 Listener
    Thank you for thecwarm welcome..Unfortunately I have unsympathetic manager although I work with an amazing team of people my condition has become to much for my job, I work in chairty too but retail so is with a heavy heart but it's the right thing for me. Just trying to reach out for understanding of this horrible disease 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @netti51 I hope the community can be a huge support for you. Can I ask, does your doctor work with multiple GP's under one practice? I wonder if speaking to another doctor could help you towards getting more medical support? 
  • Eppy63
    Eppy63 Online Community Member Posts: 1 Listener
    Hi.  I'm also waiting for a diagnosis of Dercums.  Looking back I think I've had it for many years but only discovered it about a year ago. 
    Good luck to anyone who may think they have this.  
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @Eppy63 Welcome to the community! Good luck with your wait too. Please keep us updated :) 

Categories