How do you make the doubters understand fibromyalgia is an illness?

My sister can't get her head around what fibromyalgia is and how it affects my life. She sends me information on how I should be regularly excercising and that this will solve everything. I'm a sick gal and she just doesn't get it......how can I make her understand? I've got fibro, I've just had a brain haemorrage, I'm almost blind, diabetic, I have occipital and trigemminal neuralgia, Hashimoto's thyroiditis, goitre, short term memory loss and I feel terrible most days. I've given her the FMUK and headway leaflets....I'm also on a phased return to work, fighting an insurance case and trying to negotiate with access to work and pip to get modified equipment for work. It's all too much...

How can I make her understand? She constantly lectures me about how I live my life?

I'm really sorry to moan......

19 Replies

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  • If I were you I wouldn't bother , you know you are ill and that's what matters, I don't bother to explain anymore to anyone, they just don't understand what we go through, . by the way how on earth do you manage to work with all your problems, you have my admiration , take care

  • I'm not managing lol....I hear what you're saying though mydexter and you're right....it's too much and something has to give......

  • Oh my good lord , you must do the lottery surly your due some luck. I have the same trouble with my family( get some sleep you will feel better in the morning ) my pain clinic described it as similar to ms but not life shortening , all the pain and trouble . I really hope people on here can help I'm no good with good words I just get in a muddle and sound like an alcoholic on a three day bender . Good luck.

  • You make sense to me nemofin....and thanks for your kind words....I'll keep on doing the lottery lol

  • Hello unless you got the dreaded Fibromygia your self you can't begin to understand how it feels Not even the doctors either x

  • Yep they don't get it do they!

  • Hi Silmarillion

    I really am so truly sorry to read this my friend, and I think there are people who will never listen and never understand simply because they cannot grasp the issue? I use to have a friend (past tense) who was the same. So one day when I had totally had enough of him I purchased a box of ''Imodium,'' and when he was going on (as usual) I handed him the box. He asked what it was for and I said you need something to stop you talking s**t! I count myself as fortunate that I do not have to listen to him anymore.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • 🤣🤣🤣🤣🤣🤣🤗. Well said I'm away to buy some I know I few people that could do with some. X

  • x :)

  • Ask her if she was diagnosed with a life altering illness and only had weeks left to live, would she look back on her life and wish she had done more exercise !

    Ive had fibro for years and years and ive worked more hours in physically demanding jobs than any other female I know.

    I had to adapt and work when my energy allowed me to. I would always hit what i called a slump which usually lasted 3 or 4 days sometimes longer, I would hardly be able to function at all, ive lost many friends and lost touch with many relatives because they dont understand me, they think im being distant and difficult. Recently ive been a lot firmer with people as Im not prepared to suffer the non believers constantly telling me what i should and should not be doing. Staying mobile helps me but exercise does not, in fact it sets me back for days on end.

    My advice is do what makes you happy and not what others expect you to do. Your eyesight is precious and no amount of exercise is going to make any difference to that.

    You could instead surround yourself with what are called Your Soul colours. They are the colours that as soon as you see them you instantly smile, its as if your heart is smiling. It makes a huge difference.

  • Thanks Sadiestar!

  • So sorry to hear you're so poorly. A rheumatologist nurse once told me if we had a full body cast, head and necks in a brace we'd get all the sympathy we deserve. So I sometimes use that description when explaining it to people. A lot of people understand the pain of arthritis as or pain after a hard work out so I get them to imagine that pain constantly in every muscle including facial, fingers, toes, heart, the colon etc., as well as the 'normal' arms, legs and back, with the feelings of flu. It seems to help people understand a bit better. Good luck x

  • No bother sweetie. When I had to teach I tried to make it literal. So if you ie tell her it feels like having fallen downstairs daily.

    Then show her, wait not by pushing her! 😀 But ie insert a sterilised (ask if want explanation) safety pin in one upper arm. Then ask her to touch it each time she moves. Trust me you'll win before the pin experiment even begins. If she's game, sure many pins. I'm going with you guys are not Hindu having carried the capable or into this in one way or another here. Nurses are taught about injection on themselves first. Works. And no I'm not a medieval torturer.

    You can also tape a sterilised tack works the same.

    All the best. 💗

    Blessings.

  • I agree with Mydexter,dont bother.some people not all feel they have a right to tell you what you should do and that will fix all ,often these are the people who are in good health and have no idea what some people have to deal with in life, regardless of what illness people have.You are amazing to still be able to work. take care,dont waste your precious energy on people who are ignorant of your illness.

  • Wow. You're a superwoman managing what you do. Every day you're getting up and trying to be as normal as possible you're showing your sister just how strong you are. You're also showing how strong she isn't as she can't give you any of her time to try to really understand your situation. Stay strong and positive about all the little achievements. They add up. Save your mental energy for yourself and those that do empathise x

  • Wow, you have amazing strength. You sister should see that. If she was my sister, I would thank her for her attempt to help me, as it seems she wants to but knows she is powerless in the situation. I would explain that unfortunately fibromyalgia is different for every one and that I've tried it and it doesn't work for me. I would then tell her if she comes across anything new to let me know and we could talk about it orwhatever.

    But yea if not, I agree with everyone else. :)

    Hope everything works out for ya

    Take care × × ×

  • Thanks everyone for your valuable input!

  • yes i had a friend who said youve had these symtoms for a long time ---like i should have put them into charity shop before they became chronic .. and she was a nurse

    another one said for god sake all you talk about is your aches and pains have you considered youve got mauchhasens syndrome . ..i replied well if you researched that why dont you research fibromyalgia .. i was not even talking about itj ust wincing as got into the car as we do .

    i could say just drop your friends but you might end up with none .lol

    find a friend with fibro only he or she will understand .

    as ivesaid before we allneed a monitor that shows oour pain on our orehead . which would also flash red light when we are in mortal agony

    then the ignorant may be enlighted .

    lol rant over for the day im going to do something painful .

  • Other people don't know how to handle the suffering of others. They don't know how lucky they are to be pain free and in good health....I don't ask for sympathy or empathy on a daily basis, I just want others to realise my limitations are at a different level to their and just to bear this in mind when they ask me to do stuff. I'd dearly love to be able to do 10 mile hikes....

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