Fibro description

How would you describe to family / friends what the condition is? As I have only just found out my self that I have it and it isnt something people are familiar with how do I describe it to people. People are asking what's up with me after recent tests / appointment I tell them I have fibromalgia and there reply is "what's that". I really don't know what to say without going through a list of my problems by that point their bored or thinking I'm making it up!!

how have you described it to loved ones?

Best wishes to you all x

16 Replies

  • Hi there, it's not easy. It's a very personal thing I think. Some are better at articulating how they feel than others. I know that on this site (or linked to it) are are range of information sheets that you can download and print off. If I was struggling to explain I would use these. As many have said here, what we have is largely invisible so isn't readily apparent to anyone else. From my own experiences, I don't mention it much to my wider family. I endeavour to explain to my wife but not so much to my kids. This site is marvellous for understanding acceptance and acknowledgement. My most typical analogy is to say it's like haven flu but minus the raised temperature. Most people are familiar with flu symptoms. Hope that helps.

  • Thank you and yes that helps I shall take a look at the info sheets

    Best wishes x

  • Morning ..I am a year in to the fibromyalgia club ..My hubby takes no notice of any of the things that can pop up with fibro..The worse thing at the moment with me is the burning tingling pain all over .I just say throw yourself in to stinging nettles and add the worse toothache you have ever had .This is it for me . Sending you gentle hugs..

  • I too have suffered with this in my legs. I could be walking fine and then burning legs, itching and one time I did actually rip my trousers off as it seemed they were irritating me more. They were red as though scolded and I'd rub n scratch madly until after sometime it would stop. Thankfully I was with my husband and we were on the edge of a woods (about to walk the dog) and no one around to witness my actions. (Car near by) It does feel like stung all over. It's hard to explain the pain/feeling to anyone else I know. I hope you don't have too many of these episodes. I haven't for sometime.

    Best wishes

  • I agree with jonesvicky, (don't want to presume that her name is Vicky?). I do the flu without the temp as well.

    I am going to watch these answers with great interest as it's a question I would have asked. It is difficult for joe normal to understand we are so 'ill' as we look fine 😺

  • Bizarre cause I to get a burning sensation on my skin so much so I can't bare to have anything against skin as it feels almost like a constant friction burn. Thought I was just being over sensitive and dramatic but I know now it's all part of this frustrating condition.

    Thanks for sharing

    Best wishes to Al x

  • What about a short succinct statement like ......'it's a horrible illness that leaves me frequently in awful pain anywhere in my body and often so tired that it's all I can do to drag myself through the day!'

    And then add on........'if you want to know more can you please look it up the NHS website for info as I'm just too tired to explain any more!'

    I think it is worth the people around you reading up on the condition so that they can understand easier when you say 'No, I can't do that/go there today etc because of how this illness is making me feel." Having people around you who understand helps take the strain of you and they can then give you perhaps some practical support, some much needed TLC etc when the illness pushes you down. The right support makes everything easier to bear. All best.

  • Oh ok so 6 sessions that's not going to do much good long term but it could be a short term relief just to feel slightly better even just for a couple of weeks would be wonderful.

    Really looking forward go bowling just not looking forward to the after effects but hey Ho we have to grin and bare it just to enjoy little pleasures when we can.

    Could chop my legs off right now, not a good idea and I wouldn't but really hurting. Lay on sofa watching x factor to try and take my mind off it. (With out much joy)

    Best wishes to all x

  • I describe it as 'feel like I have the flu without the cold and feels like iv been hit by a bus oh and I'm tired like I have a new born. and I'm never going to get better.

    It's hard to explain to others and really hard for them to see you going through so much. There helpless.

    I think just having this site helps so much and to knowyour not alone.

    Only a few people truly understand what I go through. X

  • Ok so I just sat and typed my reply but stupid fog set in and then didn't even know what to do to send my reply........ pressed the wrong button and lost it arrrr how frustrating.

    Basically I could scream at this condition and gain nothing,I could scream at my family and get now where it's just one big frustration


  • Hi jonesvicky81

    I sincerely hope that you are feeling as well as you possibly can be today? I am so genuinely sorry to read that you are having this issue explaining Fibro to others, and I have pasted you a link below to the patient booklet from our parent site, Fibromyalgia Action UK and I sincerely hope that you find this useful:

    Fibromyalgia Action UK Website:

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • I say to other people that my central nervous system does not work properly and feels pain all the time. Some still sound or look bored afterwards. I guess that you find out who your friends are in situations like this.

  • Thank you for your reply.

    Your description sounds like a good quick reply I like the sound of that.

    Best wishes x

  • Hi, I tell people it is like having toothache in every muscle in my body. Sometimes the pain is worse in the bigger muscles but the pain never goes away. On really bad days it feels like a fire has started in my legs and gradually works it way up my body. I have tremors and twitches that make me drop things or throw things. I forget very quickly what anybody says. I become frustrated and annoyed when I am treated like a child. However I often feel like one so I should expect it.

    I think I have started waffling so I will stop now.

  • Exactly!

    Does anybody ever get angry, bad tempered not at the fibro just in general. I feel like I have such a short fuse, perhaps it is the fibro or my lack of how to deal with.

  • I go throw a wide range of emotions all in one day... Can be all content and happy - to very low. I did a post called emotions x

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