Is this how it’s always going to be? Or will things improve? Fibromyalgia

Elfmoo
Elfmoo Online Community Member Posts: 1 Listener
edited September 2019 in Neurological impairments and pain
Hello all, this is all new to me. I was diagnosed with fibromyalgia a few months ago after several years of feeling unwell. After a spell in hospital, where I thought I was having a heart attack, I was diagnosed with costochondritis which I was told was a common symptom with fibromyalgia. Since then I have felt so poorly. A common cold knocked me for six.. I cannot explain to anyone how dreadful I feel without the ‘eye rolling’ and false sympathy. I have been made to feel like a bit of a fraud especially at work. My employers are sympathetic on the surface but I have had several upsetting comments made by other employees about my ‘laziness’ !!! Everything is such a struggle at the moment, I feel as if my life is passing me by... I am so so tired and everything is so exhausting. Is this normal? Is this how it’s always going to be? Or will things improve? I know it’s early days and sorry to moan but I’m struggling and no one seems to have any constructive advise. Thank you

Comments

  • April2018mom
    April2018mom Posts: 2,863 Championing
    Hello @Elfmoo

    Try keeping a diary. Write down five words to describe your mood every single day. Have you seen a counseller or therapist? Ask your GP to refer you for either therapy or counselling. I think that you will find it helpful and cathartic too. It helps to discuss your emotions with a professional in a safe and calm space. 
    If your career is too difficult, look for a less demanding one. What about a desk or office job? Or consider volunteering. Can you reduce your hours at work or not? Give your notice if you truly hate it. 
  • poppy123456
    poppy123456 Online Community Member Posts: 62,669 Championing
    Hi and welcome,

    I'm sorry to hear that. Have you spoken to your employer about reasonable adjustments? If you haven't then i'd advise you to do this. https://www.gov.uk/reasonable-adjustments-for-disabled-workers

    If after you spoken to your employer about Reasonable adjustments you're still struggling because of your health then SSP is payable for 28 weeks, with a fit note from your GP. https://www.gov.uk/statutory-sick-pay

    You should never ever just give your notice before getting some expert advice because if you did this then you most likely wouldn't be able to claim any benefits because you could be sanctioned for leaving your job.

    Speaking to ACAS may also be very helpful. https://www.acas.org.uk/index.aspx?articleid=1461

    Also maybe speaking to your GP about your health may also be a good idea.





  • Jurph
    Jurph Online Community Member Posts: 367 Empowering
    edited September 2019
    Hi!

    Fellow Fibromyalgia sufferer here. The best decision I made in my life was stopping trying to explain it to people who just don't care. It just wastes what little energy you have left.

    There's a few Fibromyalgia groups on Facebook. I found them really helpful as I picked up lots of ideas. One AMAZING analogy is the 'spoon theory' - it's worth 10 minutes of your day to google it.

    I was just like you when diagnosed - it's a grieving process. You need to follow it through until you reach acceptance. I did it all - cried, got angry, carried on as if perfectly fine, cried a bit more.

    I wouldn't say it gets better but you become better at managing it. No one can give you a plan as everyone is different. You need to listen to your body and find your triggers, find what helps, what makes it worse etc.

    I'm about 2 years on from my diagnosis and just about at that point where I no longer get angry with the world. I had a clever hydrotherapist who told me to lower my goals and expectations, otherwise I'd always fail. And that makes you feel ****

    All the best.
  • emmarenshaw
    emmarenshaw Online Community Member Posts: 697 Empowering
    Hello @Elfmoo I’m Emma, one of the Community Champions. Welcome to the community.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Elfmoo and a warm welcome to the community, how are you doing today?

    @poppy123456 has given some great advice about reasonable adjustment within the workplace, here is some other articles you might find helpful:
    Please do let us know if there is anything else we can do, you don't need to do this by yourself. 
  • Connie00
    Connie00 Online Community Member Posts: 249 Empowering

    Hello @Elfmoo           

     

     

    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. I trust you are having a good day today

     

    I myself suffer with Asthma Fibromyalgia, Rheumatoid Arthritis, CFS and FND, (functional neurological disorder) and a lung disorder which completely fails me when I have an asthma attack.

    So, I live most of my days in pain, I can relate to where you are coming from, sometimes it gets the better of me, and sometimes I’m not sure which one is playing up more, difficult to know, so I really have empathy for you.

    now from one Fibro Warrior to another Fibro is a big umbrella its very hard to treat,  some people have CFS along with it, I could no longer hold a job down, It messed with my brain, it gave me pains like I had broken bones. its an invisible illness or condition, what ever you want to call it. its the pits.  

    I was lucky my employers put me on LTSS  so four years on I am still getting a % of my salary, you have been given very good advice here by my colleagues and I cant give you anymore but what I would add is your colleagues that are passing comments, are bullying, you should make a note of this and take it you HR Dept or Manager, this will only add to your stress, which in turn will flare your fibromyalgia and Costochondritis up more.

    you have to learn to live with the condition, what the tiggers are and avoid them if you can. as you will see yo9u are not alone there are many Fibro Warriors here that experience the same, also very different symptoms.  its a minefield. 

    if we can be of any further help please let us know.

    have a good day


     

    @connie00


  • linlin01
    linlin01 Online Community Member Posts: 38 Contributor
    Hello @Elfmoo, welcome to the site.  I've been through similar with people thinking I'm lazy and making too big a thing out of 'just a cold'.  It's a long and winding road but I am finally feeling much better than I have for years.  So hang on in there!  My diagnosis is currently chronic pain syndrome but it was fibromyalgia until very recently.
  • Adrian_Scope
    Adrian_Scope Posts: 11,712 Online Community Programme Lead
    edited September 2019
    Hi @Elfmoo. I'm sorry to read about your situation. Others in this thread have given you some great advice and we also have a fantastic Fibro community here who I hope will be able to offer some fantastic support. Can I ask if you've tried FMA UK for any advice or support?

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