Fibromyalgia !! What's that ?

Fibromyalgia !! What's that ?

I wondered if this was the normal response forum members have had from the General Public when asked why you have crutches or a stick and you have responded with 'I have Fibromyalgia!'

Do they look confused?

I usually have the 'accident skiing young lady' comment and very few know about Fibromyalgia when I start talking about it.

So, has anyone had an experience where the person knows exactly what you mean?

I look forward to falling backwards if we get lots of comments where people knew all about Fibro!

Following on from this, if FibroAction had an Awareness Pin and / or a Wristband would you possibly be interested in purchasing one of these items to show your support & raise much needed awareness ?

Or would you consider Fundraising for FibroAction at an event around the local community, whether it be Guess the Name of a Donated Teddy Bear, Guess the Sweets in a Jar or maybe something slightly crazy like a Gentlemen sat in a bath of baked beans!!

Hey, it's all for a good cause! If so please get in touch for a fundraising pack : info@fibroaction.org

Let's get awareness out there !

20 Replies

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  • Umm once at the hospital I was there for trigger point injections and so was the person in the next bed and she had .... Fibromyalgia ... She was lovely she was on another fibro site so I told her about this one.... Maybe she is here... I hope so

    And yes I would wear a wristband or pin or both if they were available

    VG x

  • Thank you for your comment (falls backwards!)

  • Hi,

    I would wear a wristband or pin.

    I have mentioned Fibromyalgia to several people over the past couple of years who (be prepared to fall backwards Mdaisy!) have said " Oh that's awful my ********** has that" insert, friend, sister, or some other relative.

    So...maybe the word is getting out and people are now becoming more aware of Fibromyalgia. Let us all hope so!

    Have a good evening everyone and keep warm.

    Love and hugs Saskia. XX

  • That's great to hear !! So glad I didn't say I would eat my hat!

  • You'd have indigestion by now! XX

  • Sure would ! So good to hear that more people seem to be aware :)

  • Hi Mdaisy,

    I don't usually discuss my health with other people but because I sing in a very large choir (approx 100 singers) and often have to miss rehearsals because I am too tired to go, people often ask me if I am OK. So...I have had to start telling people that I have a condition which fluctuates so, although I can look OK and be alright one week, I may not be the next week. I have been surprised how many people have heard of Fibromyalgia and mentioned that they know someone else with the condition. Also, since joining Face Book last year a few people have noticed that I post little snippets about Fibromyalgia on my Timeline and one or two people have asked me if I have it and have sympathised or even told me that their mum has it or their friend. It seems that this condition is maybe more widespread than we think and this is backed up by all the members on this wonderful site.

    I am a very private person, in many ways, but very open and friendly in others and I have now come to the conclusion that I should just be open and honest about having Fibromyalgia and, if people aren't interested or don't care, then that is their problem but if people are interested and want to ask what it is or how it affects me then I tell them. It may help to spread the word in a small way which, hopefully, may help all of us in the long term.

    Interestingly, I sit next to a GP who is a lovely lady and she is very understanding and quite knowledgeable about Fibromyalgia. I don't pick her brains, as she comes out in the evening to relax, but if she happens to pick up that I haven't been too good she always asks how I am. She also understands depression, as she has suffered with it herself and so does her youngest daughter who is now at university. As she shared her worries with me over her daughter, I felt I could be open with her about the fact that I have suffered with depression on and off throughout my life. I like to think that I have been able to support her, which is a nice feeling, as I feel pretty useless most of the time!....lol.....!!!!

    Have a good afternoon and keep warm. The sun is shining here which is nice and it was fairly mild when my husband and I went out with our 2 dogs.

    Take care, Love and hugs Saskia. XX

  • Sounds like a lovely afternoon, I really like being out in the open & sunshine and we have 2 dogs too ! Glad you enjoyed it :)

  • Wristband or pins would be great!

    People often say "Fibromyalgia -What's that?"

    I have been asked if it's infectious, hereditary or if it causes paralysis, even if it's an STD!

    I always say it's a very nasty kind of arthritis - most peoples' brains won't stretch any further than that!

    Thanks to Mdaisy, I can now tell them that the only known cure is to sit in a bath full of cold baked beans. :D

    Love Moffy x

  • Wristband or a pin i agree would be great, i was out today and was having a bite to eat in a local cafe and a lady asked me what was wrong as i use a crutch and told her i had Fibromyalgia and basically had never heard of it so i had to try and explain!! i get this all the time there is just the odd time that i get blown backwards when they say they know what it is!!

    I usually say it causes all your muscles to hurt then they understand....

    Love Aisha..x

  • I had never heard of fibromyalgia until my next door neighbour told me she had it. When I asked her about it I was blown away when she started describing MY illness. Hotfooted to GP, and sure enough, guess what I was diagnosed with, after a few more tests, visits etc. Then, a few months later, I got talking to a woman who lived 4 doors away, and I told her I had fibro, and she said, that's amazing, so have I!

    Weird, 3 of us in a road of 10 houses! And yet, only 2 months ago I was talking to one of my other neighbours, who didn't even know I or my neighbour were ill, and had never heard of fibro! Talk about invisible!

  • My Mum had fibromyalgia too but it was called fibrositis then, which I think people have heard of, most people who I tell ask what fibromyalgia is so I'd wear a band or a pin.

  • one of my daughters friends Mums told me she had fibro not knowing i do too, it was lovely talking face to face to someone who understood. I would love a fibro pin

  • I hadn't heard about fibro before being diagnosed with it. The people/freinds that ask me pull a funny face when trying to describe fibro.

    I have read a comment somewhere that to try & describe it was like very bad arthritis with pain not in the joints but surrounding muscles, although there are many other symptoms i thought it quite a good way to answer....it may well have been on this forum i read the article.

    I would love to wear a pin & wristband, stay warm & take care..xx

  • My uncle has it aswell as me. Id wear a pin or wristband... was actually thinking of getting a fibro butterfly tattoo :)

  • I would def wear a wristband or pin.

    I'd say more and more people I meet have heard of Fibromyalgia however I was speechless recently when I told someone I had it and she replied that she used to have it, went on a course and is now cured! I very much doubt she had it at all!! X

  • Thank You everyone, for all your comments !

    Great to hear you all would like to support FibroAction in our aims to raise awareness!

  • Hi there i would happily ware a pin , wristbands are a problem because my hands swell up , I can't ware rings either .

    I normally find myself going into full explanation of fibromyalgia because they haven't herd of it , but I normally only say few words and I see them glaze over !!!! They don't hear a word I'm saying and change subject ASAP !!!! I then feel so low it upsets me that people just don't have interest in something they can't see !!!! Broken limbs or black eyes suggest juicy gossip !!!!! I wish pain was blue and then we would all look like smurfs and maybe then we'd get some sympathy !!!! Xx

  • Hi i too would wear a band or pin for fibro xxxxxx

  • My nhs physio knows about fibro .. What about that then .....

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