Fibromyalgia and sensory seeking- anybody else? — Scope | Disability forum
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Fibromyalgia and sensory seeking- anybody else?

butterflyalike1
butterflyalike1 Community member Posts: 3 Listener
Hello everyone I am new to the forum and recently discovered a name for my illness with fibromyalgia. Hope to speak with some of you! 

Comments

  • butterflyalike1
    butterflyalike1 Community member Posts: 3 Listener
    One thing I have noticed with my fibromyalgia is that when I am physically not doing great, and having a flare, sometimes my brain wants to work up as much as it can. Take in more information, noise. Does anybody else have this? How do you counteract these?
  • butterflyalike1
    butterflyalike1 Community member Posts: 3 Listener
    One thing I have noticed with my fibromyalgia is that when I am physically not doing great, and having a flare, sometimes my brain wants to work up as much as it can. Take in more information, noise. Does anybody else have this? How do you counteract these?
    I would describe it as sensory seeking, related to Aspergers. It is when I know I’m on my way to burn out. I just don’t know when and how to stop it.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @butterflyalike1, and welcome!

    Thanks for sharing this, that's a really interesting way of describing your fibromyalgia symptoms. We have lots of community members with fibromyalgia, so hopefully you'll be able to connect with others soon. 
  • AlisonNetty
    AlisonNetty Community member Posts: 192 Pioneering
    I've had Fibro since 2013. I find just trying to get through a day is hard work. I woke up with pain everywhere but as the day goes on it becomes an awful ache that won't go away no matter how many painkillers I take. I get too tired with it. 
  • sarah50
    sarah50 Community member Posts: 119 Pioneering
    Hi I was finally diagnosed a few years ago it's a long process. I have fibro and ME/ CFS. I sympathise with you just getting the diagnosis was a herculean journey. I have sensitivity/aversion to light and noise and from others I have spoken to this is quite a common symptom. I was asked what my symptoms were by a friend and had to stop after seven or eight as her eyes were glazing over. I don't get all the symptoms all the time but I have some of them most of the time if that makes sense. But pain and fatigue are constant. How do you feel you are treated by GPs?

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