I am the hell that is Fibromyalgia. — Scope | Disability forum
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I am the hell that is Fibromyalgia.

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Queenofdisabilities
Queenofdisabilities Community member Posts: 91 Connected
in Chronic pain and pain management
24 years ago after being very very fit,healthy,had a beautiful baby daughter,a wonderful vocation my very very demanding job &  busy social life.
I went out & my legs would give way id collapse  & be taken home by very kind strangers.
I kept going out time after time I'd collapse again & again & again,over & over & over.
I have never been as seriously tired as i was.
I felt like someone took all my energy with a massive syringe.
Plus the serious  pain i was in was literally  crippling me.
I went to see my Doctor told him my symptoms he said i know exactly whats wrong with you?
I said do you?
He said yes you have Fibromyalgia Syndrome,
Myalgic Encephalitis & Chronic Fatigue Syndrome.
I didn't have a computer so I went to the library researched all 3 illnesses especially Fibro.
I said OMG is this what my life is going to be like?
Nothing to look forward to apart from sleepless nights,crippling pain,no energy.
I felt like i was cursed kept asking why me?
God only gives us what he knows we can cope with.
I'm posting now as im in serious crippling pain & am seriously exhausted i will continue tomorrow.
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  • wilko
    wilko Community member Posts: 2,458 Disability Gamechanger
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    @Queenofdisabilities, hello and welcome, what a great doctor you have gave you a diagnosis on the first visit. I read on another site of GPS being of no help or giving any support to their patients. GPS are unable to diagnose Fibromyalgia when presented with the symptoms so the patient is left depressed. I hope your GP is there for you as you come to terms with your new medical conditions and is able to prescribe medications and referrals when or required to other healthcare professionals.
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    I'm sorry to hear that you're in so much pain @Queenofdisabilities. It's good that your GP was able to diagnose you so quickly. To echo what wilko has said: has your GP offered you any treatments, or made any referrals for you? 
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  • Queenofdisabilities
    Queenofdisabilities Community member Posts: 91 Connected
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    Thank you Tori this was 24 years ago.
    I'm on the strongest pain meds but there's nothing else to be done.
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  • Queenofdisabilities
    Queenofdisabilities Community member Posts: 91 Connected
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    Wilko this was 24 years ago!
    I'm on the strongest pain meds but nothing else can be done.
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  • Cressida
    Cressida Community member Posts: 1,016 Pioneering
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    @Queenofdisabilities it sounds like you have a very good GP, especially recognising fibromyalgia all that time ago when less was known about it. Have you asked for a referral to a pain clinic? I suffer from RA and fibromyalgia and have found pacing myself is the only way to get through things. 

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  • Queenofdisabilities
    Queenofdisabilities Community member Posts: 91 Connected
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    I did have an amazing Gp he is my hero for diagnosing me straight  away.
    I have been referred to the pain clinic so many times with no success.
    I have to rest all day ive no choice.
    I really felt the difference on my poor aching serious crippling pain filled body.
    I have a very high pain threshold but this crippling pain im in is through the roof.
    Even I can't cope with its intensity when im crying i literally break my heart.
    Im crippled literally ??.
    Im in tears now as I'm writing this.
    PLEASE PLEASE will a many of you that are  out there help me??!!!
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Have you tried any talking therapy to talk through how you're feeling @Queenofdisabilities? I know you've said you're on the strongest pain medication you can be on, but have you mentioned your high levels of pain to your GP? It could be that they could try you on a different kind of medication perhaps, or have other pain management tips? 
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  • Queenofdisabilities
    Queenofdisabilities Community member Posts: 91 Connected
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    Ivecl had talking therapy all my adult life.
    I'm always ok when having the number of sessions you're allowed.
    Due to my numerous many complex illnesss I've been given a few more sessions.
    Thats all well & good but once they stop im back to square one.
    Alone &:not wanting to discuss my past history of  very serious psyhical & very serious sexual abuse.
    Very sadly it happened & i had to accept it i have done.
    I'm on a very long waiting list for 
    Deep Trauma therapy.
    I'm not looking forward to reliving all my abuse but its the only way i can move on & learn new coping skills.
    I will be having therapy for the rest of my life.
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  • Queenofdisabilities
    Queenofdisabilities Community member Posts: 91 Connected
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    Yes Tori my Doctors are all aware of my seriously high levels of pain.
    There is literally nothing stronger for my high level of crippling pain.
    I'm not moaning or complaining that's not me.
    Its a living hell trying to get through each day with my pain.
    I have a very high pain threshold but this intensity & the strength of my pain means im crippled.
    That's very very hard to take.
    Having really good crys are my only release & i cant control the tears ??.
    But I'm a very strong women so all my medical team involved in my care say.
    I am very strong just don't feel very strong due to everything I've been through.
    Any kind words & support are very gratefully received.
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  • Pixie51
    Pixie51 Community member Posts: 70 Courageous
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    @Queenofdisabilities Have you ever been referred on to a specialist at all or ever had any mri scans to investigate further? I would have thought based on you having reached the level of pain meds you can have they may investigate further especially after all these years.

    Pix
    Yoga heals the soul ??
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