Explaining Fibromyalgia to others is not easy...

All your fibromyalgia experiences, questions and answers.

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Re: Explaining Fibromyalgia to others is not easy...

Postby vivien54 » Tue Nov 04, 2014 5:09 pm

Thank you Pinkbeach I have saved it to remind me how to explain. X
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Re: Explaining Fibromyalgia to others is not easy...

Postby Fairytaz » Tue Nov 04, 2014 9:56 pm

That's so amazing, at times, I felt tears, I hope you don't mind if I keep a copy :) :hugs:
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Re: Explaining Fibromyalgia to others is not easy...

Postby Hannah24 » Tue Nov 04, 2014 10:36 pm

Hi,

Thanks Pinkbeach. I've never thought of just writing it for myself and I think you're right that it would really help. I'm going to give it a go and who knows...I might be brave enough to share it sometime.

Cheers Hannah x
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Wed Nov 05, 2014 10:35 am

vivien54 wrote:Thank you Pinkbeach I have saved it to remind me how to explain. X


so glad you found it useful :) x
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Wed Nov 05, 2014 10:37 am

Fairytaz wrote:That's so amazing, at times, I felt tears, I hope you don't mind if I keep a copy :) :hugs:


Hi Fairytaz, aw thank you! yes of course you can keep a copy :) I posted it for that very reason x
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Wed Nov 05, 2014 10:38 am

Hannah24 wrote:Hi,

Thanks Pinkbeach. I've never thought of just writing it for myself and I think you're right that it would really help. I'm going to give it a go and who knows...I might be brave enough to share it sometime.

Cheers Hannah x


Go for it Hannah! :) x
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Re: Explaining Fibromyalgia to others is not easy...

Postby Angie Baby » Wed Nov 05, 2014 1:01 pm

Hi pinkbeach, thank you for taking the time to put into words the affects of suffering from fibormyliga. I've just been to the hospital yesterday to have cortisone injections into my left shoulder under xray so that they get it in the right place. I'm now in agony but hopefully in a few days I'll feel the benefit from it. I've also had the same injections into both knee's in September.
I'm lucky that my husband Al and my family are so supported. The family that don't live with me 24/7, I don't think they fully understand what it means to have Fibromyalgia. They think that because they can't see what's going on then I must be okay. I've tried explaining how it affects me. So I'll use your explanation and maybe they'll understand a little bit more.
My mam's like your mam, she feels helpless and wishes she could take the pain away. Or even have the pain herself! I said I wouldn't wish this on anyone let alone my mam. I've loved seeing your illustration and I'm going to see if I can have the fairy with the wish of Fibromyalgia be gone as a tattoo. Maybe then people will know that I don't want to be like this! Gentle hugs to everyone who suffers from this deliberating condition. :-) :needhug: :face-slap:
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Re: Explaining Fibromyalgia to others is not easy...

Postby FionaG » Wed Nov 05, 2014 4:32 pm

Hi,

I'm new here, so this is my 1st post! :-)

I just wanted to say thanks so much for writing and posting this. I hope you don't mind, but I put the link on facebook for my family & friends to read. I'm only 32, but have been suffering for years and have had countless tests, scopes, scans, etc, but never a diagnosis. A few months ago my GP and (I hate to say it!) my own Mum were even trying to convince me that it was all in my head! I couldn't believe it! :evil: I kept pushing though, since I knew I wasn't imagining it (!!), & finally got to see a highly recommended rheumatologist who has diagnosed me with fibromyalgia. I could honestly have cried when he said it, but out of relief!! However, no matter how I try to explain to family & friends how it affects me, I can never really put it into words effectively - certainly not without sounding like I'm just having a pathetic moan! So I shared your post with them & the response I've had in the past 24 hours has been amazing! Even people I wouldn't have expected to respond have been so supportive and caring, it's just fantastic. So thank you very much, you've helped more than you'll ever know. :-D xx
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Thu Nov 06, 2014 11:53 am

Angie Baby wrote:Hi pinkbeach, thank you for taking the time to put into words the affects of suffering from fibormyliga. I've just been to the hospital yesterday to have cortisone injections into my left shoulder under xray so that they get it in the right place. I'm now in agony but hopefully in a few days I'll feel the benefit from it. I've also had the same injections into both knee's in September.
I'm lucky that my husband Al and my family are so supported. The family that don't live with me 24/7, I don't think they fully understand what it means to have Fibromyalgia. They think that because they can't see what's going on then I must be okay. I've tried explaining how it affects me. So I'll use your explanation and maybe they'll understand a little bit more.
My mam's like your mam, she feels helpless and wishes she could take the pain away. Or even have the pain herself! I said I wouldn't wish this on anyone let alone my mam. I've loved seeing your illustration and I'm going to see if I can have the fairy with the wish of Fibromyalgia be gone as a tattoo. Maybe then people will know that I don't want to be like this! Gentle hugs to everyone who suffers from this deliberating condition. :-) :needhug: :face-slap:


Hugs to you Angie Baby. I know how painful steroid injections can be, i had one in the tendon in my thumb and one each elbow. I hope you get some relief from having it -mine always felt worse before it felt better. I really hope by sharing what I wrote really helps your family understand what you are going through better. I have experienced the same thing with people being skeptical and it is sometimes more upsetting and frustrating than dealing with the condition. It is hard for our mums as they usually truly see what we have to go through. I would love to see a pic of your tinker bell tattoo if you get one! take care and keep strong xx
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Thu Nov 06, 2014 12:11 pm

FionaG wrote:Hi,

I'm new here, so this is my 1st post! :-)

I just wanted to say thanks so much for writing and posting this. I hope you don't mind, but I put the link on facebook for my family & friends to read. I'm only 32, but have been suffering for years and have had countless tests, scopes, scans, etc, but never a diagnosis. A few months ago my GP and (I hate to say it!) my own Mum were even trying to convince me that it was all in my head! I couldn't believe it! :evil: I kept pushing though, since I knew I wasn't imagining it (!!), & finally got to see a highly recommended rheumatologist who has diagnosed me with fibromyalgia. I could honestly have cried when he said it, but out of relief!! However, no matter how I try to explain to family & friends how it affects me, I can never really put it into words effectively - certainly not without sounding like I'm just having a pathetic moan! So I shared your post with them & the response I've had in the past 24 hours has been amazing! Even people I wouldn't have expected to respond have been so supportive and caring, it's just fantastic. So thank you very much, you've helped more than you'll ever know. :-D xx


That is so amazing that you have had a great response! I am so glad you shared it and it has helped you :) . More people need to know what it's truly like to have fibromyalgia, so thank you!
I had a similar experience with countless tests/scans etc and some clueless consultants before i got a diagnosis. I too got made to feel I was making it up, but I knew it wasn't normal to be in pain in one form or another all the time. And once I did get a diagnosis people were still skeptical because they had not heard of it, or thought I cant be ill as I look perfectly fine. That's what made me write about it.

I really hope people continue to be more supportive :) xx
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