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Hi, my name is 1488girl! Anyone else with ME or fibromyalgia?

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1488girl
1488girl Community member Posts: 2 Listener
edited August 2022 in Start here and say hello!
Hi everyone.  I've just been diagnosed  with M.E and fibromyalgia.  Anyone else with these conditions?... would love to speak to anyone who can understand  what I am going through. 
Many Thanks! 

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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Morning @1488girl welcome to our great group, I have seen a lot of post's mentioning "fibromyalgia" so you on the right forum, there are lots of us with our own demons/illness/disability and we will talk about anything ha ha
    I am sure you will be greeted from some of the other members today when the site wakes up.

    In the mean time if your ready to, have a look around the site, any problems just ask some one is bound to be on line to help.

    I look forward to seeing you around.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
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    Welcome to the community @1488girl :) It's great to have you on board! How's your day been so far? 

    As SueHeath has said, we have plenty of members with these conditions on the community, so you're in good company. Posts about ME and fibromyalgia tend to pop up in different categories on the community, but here are a few places you might be particularly interested in visiting:
    Is there anything in particular that you're going through right now that you wanted to share with us?
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello and welcome from me too @1488girl and thanks for reaching out and joining the community today :)

    Let us know if you need help with anything, and I hope you'll find the forum a friendly and welcoming place to spend time.

    Alex
    Online Community Coordinator
    Scope

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  • Binky1234
    Binky1234 Community member Posts: 408 Pioneering
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    1488girl said:
    Hi everyone.  I've just been diagnosed  with M.E and fibromyalgia.  Anyone else with these conditions?... would love to speak to anyone who can understand  what I am going through. 
    Many Thanks! 
    Hi I also have fibromyalgia and imho it is a truly horrible illness I was diagnosed in 2020 but more than likely had it for many years before diagnosis as I have other health conditions that mimic fibromyalgia.

    I also have Crohns disease, b12 deficiency, crohns arthritis among other stuff going on what I would say about fibromyalgia is just go at your own pace, rest when needed and do not be afraid to cancel friends and family at the last minute, you must put your health first and do everything the Occupational therapist, rheumatologist advices.
    As for pain relief very little helps on my bad days with my fibromyalgia but everyone is different plus a lot of meds for fibromyalgia I cannot take because of my Crohns.

    What seems to work for me is a combination of two antidepressants.

    Pain management  helps me a huge amount but I think your GP or rheumatologist if you have one needs to arrange this, if offered I would advise taking it up.

    With my fibromyalgia it seems a uphill struggle that you can't make sense off. Feels like you've pulled every muscle in your body by overdoing the gym...yet all you've done is put the kettle on...just can't make sense of what and why we're feeling what we feel, and don't get me started on Fibro fog that is when I thought I was going mad when that 1st happened.

    My occupational therapist gave me a huge loads of NHS leaflets on fibromyalgia. My rheumatologist sent me away with a booklet called Fibromyalgia versus arthritis that was informative at the start of my journey. This website has booklets that you can download it helped me and my family understand fibromyalgia. I feel the least we can do is to try and understand our condition.

    https://www.versusarthritis.org/order-our-information

    Hope posting this link is allowed if not please remove and accept my apologies.



    Knowing When to walk away is Wisdom, being able is courage, walking away with your head held high is dignity.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
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    Thank you so much for sharing all of this @Binky1234! I hope that @1488girl finds it helpful! I'm glad you two have linked up.

    That kind of link is allowed, yes, don't worry @Binky1234 :)
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • Mslincs55
    Mslincs55 Community member Posts: 5 Listener
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    Hi I have fibromyalgia and arthritis, my days are just a nightmare, here to talk
  • Tori_Scope
    Tori_Scope Scope Posts: 12,504 Disability Gamechanger
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    I'm sorry to hear that @Mslincs55 :( I hope that connecting with these other members will be a positive outlet for you to share your experiences. 

    What do you think could change that'd make daily life less of a nightmare for you? 
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • Jo_2022
    Jo_2022 Community Volunteer Host Posts: 298 Pioneering
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    Hi @1488girl! 😄 A warm welcome to you on the online community. I am so sorry to hear about the Fibromyalgia and ME. That sounds like a lot to cope with.

    I personally have chronic pain following a back injury. I feel your pain and I have lived experience of how pain can reduce the quality of life.

    You may find the links below helpful, they certainly helped me:

    https://www.vidyamala-burch.com/

    https://painconcern.org.uk/

    How is your pain today? Finding time to do things that help you relax and make you feel happy are essential. Take care 😄

    Community Volunteer Host with a passion for human rights.


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