How do I expalin Fibromyalgia to others?

I have just been diagnosed and I am new to this forum. Already I am finding myself playing it down and friends have e-mailed me info such as All you need is to excercise and get plenty of sleep etc etc. Yes, thats true but what about if you cant sleep or you are dog tired, yet again. I can see this is going to be hard. I feel really sad about it too as though a fitter me of old has now been lost.

14 Replies

  • Hi Marzy,

    I'm sorry you are feeling lost. I am a newly diagnosed fibro and I too mourn the life I had before. I had a stroke 7 months ago which has left me like this....and at only 28 it is hard to accept. I have two small children as well which doesn't help because I want to do things with them. I try to remember that fibro doesn't mean I can't do anything, it just means I have to be imaginative and find new ways on doing things.

    I don't have any tips on what to tell people, it's hard but I have got some good friends who understand and the others I don't see very much as it upsets me too much.

    I hope you can find some support somewhere, maybe a local ME/FM support group?

  • Hi.

    Thanks for replying. It feels odd to have to do this I have never needed a support group in my life...always very self sufficient!! :) It must be hard for you with two small children as well. My girls are 19 and 14 and my niece of 15 who lives with me is a star:) This site looks very useful though .

    Good luck and lets make good use of this forum :)

  • I was the same, so independent and always on the go....never needed to rely on anyone and now I rarely leave the house without someone to help me. I have funny turns and my legs don't always is frustrating. I use crutches all the time now, an to be honest they are more of a hindrance than a help so going to see about a walking stick. Again, it's taken me a while to come to terms with it. I'm getting a scooter soon, so at least I can get myself out and about again. I never thought I'd be excited about a mobility scooter but I can't wait :)

    Everyone here is lovely :) so make the most of it hunni xx

  • hi Marzy, i do feel for you, i havent been diagnosed for long and still trying to get a specialist but i find its best to be for warned, i find it hard to get people to understand as they cant really see anything substantial. this site has been a god send to me, and i am trying to find a support group , i wish you well, sending hugs, x :)

  • HI i am newly diagnosed and i play it down , never been one for gps or fuss. i dont say nuch to anybody i just get on with it . Silly yes but thats the way i am . I FELL DOWN AND WOULD NOT LET MY HUBBY HELP ME UP . XX

  • I'm exactly the same Rosehip, probably why it took so long to get diagnosed.

  • Hi, welcome to this wonderful site. :)

    I have had fibro for a number of years now and i still find it hard to tell all. I usually keep quite even to my family. If i am feeling worse than usual and say something there is always someone else moaning on and i dont get heard so i dont bother.

    I wish i had the answer for you, sorry

    hugs, kel xxxx

  • hi to be honest i dont think there is an answer. i was diagnosed with RA for 2yrs and then saw a new consultant who said it wasnt RA but fibro that was 5yrs ago. its very difficult to explain how you feel and get others to understand unless its on this site. i only found this site a couple of weeks ago, but my hubby says since i have i have been a lot happier. its so good to talk to others who understand. sorry havent been much help but everyone here so friendly. gentle hugs xx

  • Hi and thanks to all of you who have replied. It made me so sad that some of you suffer so much and just keep quiet and keep plodding on. I can see how this site has been so helpful to you all. I dont think I will try and expalin to all I meet as whats the point. Have a really nice boss and he has been great and I think that is a good start.

    Nite all and I am sure I will be coming back here often :) xxx

  • I am the same hun, I used to run 3 veg shops so used to do alot of lifting and working all the hours, but now i have to use crutches and my son (who is 18) has to help me get dressed.. I hate being like this knowing what I used to be like. All i can say is try and think positive and don't over do it. In time you will see your limits x

  • I have told people it is a rheumatic muscle condition and causes pain all over the body and you have good days n bad days and get flare ups where muscles go into spazm n you get chronic fatigue as a result of the condition n you need to rest alot. Hugs

  • Overall then, it seems to be best not to say too much at all and save it for here :)

    Thank goodness there are people that understand

    Thank you all

  • I have had M.E and fibromyalgia now for over 11 years. I still have people asking what is it? Even by my husband and daughter of 13 as they see me in so much pain but don't really understand! I have found the best way to inform them and friends is by sharing information on the illness on my Facebook page and on e-mail as when it is there on front of them in summarised terms, it makes it easier for them to understand.

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