Hi, my name is Gabi07! It seems my daughter is going through Fybro. What do I do? — Scope | Disability forum
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Hi, my name is Gabi07! It seems my daughter is going through Fybro. What do I do?

Gabi07
Gabi07 Community member Posts: 4 Listener
Hi everyone!
I have been diagnosed with Fybro few years ago. 
Unfortunately it looks like my daughter who is 14 is having to go through the same. Do not how to help her as she has not been diagnosed yet. 
She is in pain day and night . Really exhausted. Can not even go to school right now.
What do I do? 
Go private rheumatologist? Anyone in here from London to recommend good private rheumatologist please. 
Thank you.
Mine is manageable and I can even work but hers ( if it is fybromylagia) Is currently dreadful. 

Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello @Gabi07 and thanks for reaching out today, welcome to the community :) 

    Have you been able to get in touch with her GP about what might be causing the pain she's feeling? Her doctor should be able to discuss a pain management plan.

    You mention she hasn't been diagnosed yet, is she getting any support in terms of pain medication or treatment? 

    Experiencing such constant levels of pain can have a negative impact on mental health and wellbeing, so can I ask if both of you feel like you're getting enough support in that regard?
    Online Community Coordinator
    Scope

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  • Gabi07
    Gabi07 Community member Posts: 4 Listener
    Thank you Alex. 
    We mentioned fact that I have fybromylagia but it was disregarded. In terms of painkillers . Nothing works exactly like it is in case of fybro in most people. We got a referral but this 4 months away on NHS. Meanwhile I can not let her go on like this with this huge amount of pain. 
    By the way GP suggested paracetamol. Although I clearly stated that nothing works. 
    She is deprived of sleep. Stressing about not being able to go to school. I am beyond myself with worry. 
  • Gabi07
    Gabi07 Community member Posts: 4 Listener
    Ohh by the way. As it is in most cases of undiagnosed Fybro people do not believe you until you have it on the paper. 
    So we even have a problem convincing her dad that she has it. He strongly believes that if blood test are perfect than we just carry on as nothing is happening. 😥
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    I'm so sorry to hear this @Gabi07 how frustrating! I know a few of our members also live with Fibromyalgia and/or chronic pain, so hopefully they can share their thoughts with you too.

    Very often the stress of not being believed is something which isn't taken into account by people who are non-disabled, so I hope the community here can help support you in not feeling alone in this. 

    I know that stress can make your symptoms worse or cause them to flare up more often, so perhaps looking at ways to help your daughter relax and remove the fear around missing school might be helpful. 

    You can use UK Fibromyalgia's support group section to find a list of fibromyalgia support groups in your area.

    Fibromyalgia Action UK is another charity that has information and provides support for people with fibromyalgia and their families. 

    You can call their helpline on 0300 999 3333 (Monday to Friday, 10am to 4pm).

    Have you ever considered talking therapies as a way to help lessen the impact of stress and anxiety on Fibro symptoms? The mental health charity Mind has a list of useful contacts for talking therapy that you could look into.

    I know these aren't practical solutions to stop the pain, but I hope they can be helpful in supporting both emotionally. Please ask if you feel we could do more to help.

    Online Community Coordinator
    Scope

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  • Gabi07
    Gabi07 Community member Posts: 4 Listener
    Thank you Alex

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