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How do you explain fibro to others?

Posted , 10 users are following.

Asmadasalice
Asmadasalice

People look at me like I'm mad when I try to explain how I'm feeling. They dont seem to understand how I can look ok but be in as much pain as I am or that I'll be fine one day and barely able to move the next.

'It's all in your head'

'you were fine yesterday/earlier'

How do you explain to others?

When I start to I seem to just make excuses and brush it off as it's nothing.

0 likes, 17 replies

17 Replies

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  • bill38615
    bill38615 Asmadasalice

    Posted

    There is no explaining this.. i still cannot even get my doctor to recognise let alone diagnose fibro.

    They say there is no greater mask than a smile, i know that i often put a face on to hide how i fee, I couldn't agree more. I have been to work 3 full days this week and been messing around with my beekeeping hobby in the evening but now feel in pain in every bit of my body, exhausted, muddled and down. My wife is great but feeling this way does affect everyone around you.

    In answer to your question I don't try to explain but simply withdraw from things and try to get as much rest as possible.

    One day they will find a cure or remedy, I just hope it is soon!

    I hope your episodes ease and give you some respite.

    Best

    Bill

    • Asmadasalice
      Asmadasalice bill38615

      Posted

      Thank you for your reply. Its just so frustrating I dont want people to think that i am using it as an excuse when it's a reason! It doesnt help that at the moment each flare up brings new symptoms so even harder for me let alone others to understand. My GP just keeps telling me not to over think things and not not take too many painkillers...easier said than done!

  • bill38615
    bill38615 Asmadasalice

    Posted

    What pain relief are you on? I have been through the majority of them with varied success. Now been on Pregablin for the last 3 years but having less effectiveness. Like you find the attacks physically difficult but also mentally challenges me. I have had physiological help on pain management and techniques on how to handle episodes. I fear the theory is better than the practice.

    • Asmadasalice
      Asmadasalice bill38615

      Posted

      I only take painkillers as the side effects of some of the other meds seem worse than the pain. I am on a waiting list for pain management therapy.

      The psychological effects of fibro are at times worse than the pain and fatigue.

  • christine26761
    christine26761 Asmadasalice

    Posted

    DONT MAKE EXCUSES, DONT WASTE YOUR BREATH, AND DONT EVEN TRY EXPLAINING..THEY JUST DONT UNDERSTAND, ITS THEIR PROBLEM, you have enough with FMS, just put up strong healthy boundaries, if they don’t like it, let them go, if they are really your friends, they will soon come back. Perhaps get them to google Fibromyalgia Syndrome, maybe they might get it. Be blessed Asmadasaslice, and have a lovely day..set yourself free, you don’t need to carry their thoughts😍😍😍😍💐

    • Asmadasalice
      Asmadasalice christine26761

      Posted

      Thank you, I agree however I feel I need to explain when it has an impact on my work or cancelling plans.
    • Flutterbie57
      Flutterbie57 Asmadasalice

      Posted

      Cancelling plans - bluff !  Work however is a different matter- change occupation perhaps ?

       

  • charlie19
    charlie19 Asmadasalice

    Posted

    I have yet to be diagnosed however it is looking likely, regardless I have the symptoms and I am more or less housebound. People who have not seen me for a couple of months and have heard stories of my health arrive to expect to see someone very ill. Their usual initial comment is re how well I am looking. This is a hideous situation as inside I am in agony and unable to walk more than 2 minutes before I crash. No one including the medicos are unable to truly know how you feel. My poor partner who has to put up with me everyday and is in the best position to know how unwell I am probably only has a partial handle on how I really feel. Other than my fear and anxiety and constant crying my illness is on the surface hidden. So I totally agree this is a horrible condition. Despite all the wonderful support in the world, and I do have wonderful friends and family, you are essentially in your own. Apologies for the dark mood.
    • Asmadasalice
      Asmadasalice charlie19

      Posted

      It would make it so much easier to understand if we were covered in bruises or had a leg hanging off! My husband tries to understand but its hard for him too, to see me in constant pain and theres not rwally much he can do to help. I find he understand the pain better than how it makes me feel as i have really dark down days where i just want to lock myself away from everything and everyone.

      How do you manage your flare ups?

    • christine26761
      christine26761 charlie19

      Posted

      Don’t even try..no one understands it ever...better to get stuff printed out and give it to them, then it’s up to them to read it ....be blessed Charlie and have a lovely day, you have to think of you not other at this time..it just gets tooo hard trying to justify what you feel like..when Fibro makes you feell like it does  all the time..😍😍

    • Flutterbie57
      Flutterbie57 charlie19

      Posted

      Don't fear it Charlie. We are all still alive to enjoy the things we do enjoy. Anxiety I can imagine if you have work commitments. It is time to start day dreaming about a lifestyle that will be kinder to your new body requirements. There is so many other ways to make a living so you are kinder to your body. Don't be afraid of change. Put yourself first for awhile.

      ?In my early days of Fibro, sometimes I could do 2 mins walk outside my gate and I could hardly manage to get home, then later on I could walk 2 hours like I used to - I was so inconsistent. I studied my pulse, what I ate before hand, I was trying to find what caused my ups and downs. I did not find the answer. Once I accepted that I had "IT" though and got on with life, I felt mentally able to cope with my new path in life.

      All the best Charlie ! 

  • emshell1222
    emshell1222 Asmadasalice

    Posted

    I have given up to even try to explain just I'm ok no one interested not even my own family my husband say that he know how I'll I am dose nothing to help I have to do everything indoor and outdoor will not move it's got to the point where I just hardly like him anymore

    • Asmadasalice
      Asmadasalice emshell1222

      Posted

      Sorry to hear you feel alone. Although my family try its hard for them too which is what made me come on here, its made a difference knowing that others are in a similar postion. Take care
  • stellina
    stellina Asmadasalice

    Posted

    I dont explain or complain anymore. Nobody understands or care. I am alone in this. I dont tell anybody about my pain
    • Flutterbie57
      Flutterbie57 stellina

      Posted

      You are not totally alone Stellina, we all understand on here. I am fortunate that I have 2 friends with similar health problems so we can vent to each other occasionally and understand each other. Like you I don't explain to anyone else.It is a waste of breath.

      Just be kind to yourself .wink

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