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Fibromyalgia support available?

jamjarjamjar Posts: 8Member Listener
edited December 2019 in Dealing with chronic pain
hello jamjar here. Asking if there are members out there who suffer with fibromyalgia. I do and am not currently in touch with other sufferers. I always find that sharing an experience is really helpful. Comparing notes and realising that someone else actually understands your condition and difficulties helps. 
Medical professionals have little interest and offer little or nothing. 

Replies

  • Adrian_ScopeAdrian_Scope Posts: 4,987Administrator Scope community team
    Hi @jamjar. Lots of our members live with fibromyalgia. I hope you'll find someone who you can compare notes with. :smile:
    Senior Online Community Officer
    Scope
  • Connie00Connie00 Posts: 252Member, Community champion Pioneering
    edited December 2019

    Hi @jamjar


    My Name is Connie00

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community. Thank you for reaching out to us, I am a Fibro Warrior, I was diagnosed with this condition in 2009, there are some Facebook groups

    so I understand perfectly just what Fibro does to a person, the pain van be unbearable, play with your mind, as if that's not enough the Medicines play a big role in helping with the symptoms. but also give you Memory issues. but it goes with the territory, all I say to you isread up about it understand the condition, you can start with this link .  https://ukfibromyalgia.com

    Then read this it helps me now I just think I got your Number mate and you wont win

    Hello My name is Fibromyalgia,

    I'm an Invisible, Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

    Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now I also took good sleep from you and in its place gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anixious or depressed, too. 

    If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons. Maybe it was that bad fall or the virus you never recovered from. Anyway I'm here to stay I hear you're going to see a doctor who can't get rid of me. I'm rolling on the floor laughing, tell him to keep trying. You will have to go to many, many doctors until you find one who can help you effectively. 

    You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a tens unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is everyday. 

    Your family, friends and children will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like Oh you are just having a bad day or Well, remember, you can't do the things you used to do 2 years ago .

     Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a ………..Normal…………person, and can't remember what you were going to say next In closing (I hoped to keep this part a secret) I guess you already found out...the only place you can get any support and understanding in dealing with me is with other people with Fibromyalgia.

    On a good note we are always here to help. but I hope you can relate to the story as I do Its so different when you read it and understand truly not alone 

    We are always here to lend support, help, and advise where we can,

    If we can be of any assistance to you please don’t hesitate to contact us

    @ Connie00  B)


  • Chloe_ScopeChloe_Scope Posts: 6,521Administrator Scope community team
    Hi @jamjar and a warm welcome to the community! 

    I'm tagging @debbiedo49 who also has fibromyalgia. How are you doing today?
    Chloe
    Online Community Officer
  • jamjarjamjar Posts: 8Member Listener
    Hello Chloe.
    Thank you for your reply and info. I will certainly be looking into things you told me about. Also will wait to see I Debbie contacts me.Its been a busy day for me today with hospital appointment and a look around Home Sense in Gloucester. My favourite shop to browse in. An hour was enough for me and then I got overwhelmed with so much stuff to see. Bought myself a comfy cushion and some Christmas bits, a diary and calendar for 2020. I then came home and instead of taking my dogs out for a walk I sat down and slept. This happens often to me, how about you? Hope you are ok today.

    jamjar
  • chiariedschiarieds Posts: 1,210Member Disability Gamechanger
    Hi @jamjar - I can so identify. Many with my disorder often have fibromyalgia, &, altho' I don't, my son & I went for our annual echocardiograms, then saw our cardiologist this morning. Glad you were able to do a little shopping. My son & I were too shattered, altho'  his wife suggested some shopping on the way back home. I came home & had a long 'catnap' with my kitten!
    Hope tomorrow is a better day for you. Just being in pain is exhausting, & when you do more than 'normal' is unfortunately not at all good as Connie's message also highlights.
  • jamjarjamjar Posts: 8Member Listener
    Hi Chiarieds.
    Thank you for messaging me. I hope that your check today has gone well for you and your son. Funnily enough I was returning a heart monitor that I’ve worn for seven days for checks and should have been have some scans but some radioactive items had not arrived so must now wait till mid December before those can be carried out. Precautionary really rather than urgent so I am not too concerned. Getting a bit close to Christmas so may have to be after I expect. What is your kittens name and what colour? I love kittens and cats but now have two dogs that would not be good with them. Have always had a cat or even two but usually around before I had a dog in the house. It didn’t work out that way this time.


  • chiariedschiarieds Posts: 1,210Member Disability Gamechanger
    Hi @jamjar -Thank you, we both passed our annual MOT. We both have low blood pressure, which can be problematic, but as our cardiologist keeps saying, it's probably helping us both heart-wise with our pre-disposition to our genetic problems.
    My kitten's called Shadow, as she does literally follow me everywhere. She's mainly white, but has a Tabby face, black & white colours on part of her back & a black & white bushy tail. So a bit of a mongrel! I have problems with my son's Bedlington terrier, whom I look after a few days a week. He won't stop getting too close to her, & she's unimpressed!
    Hope it's not too long before you get your scans, even tho' like my son & I it's precautionary, it's reassuring to have them.
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