Explaining Fibromyalgia to others is not easy...

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Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Tue Nov 04, 2014 1:09 pm

I have got upset and frustrated so many times about people's misunderstanding of fibromyalgia. I always felt like they didn't get it and I was made to feel like I was making it up, being lazy or just awkward. So I decided to write about what Fibromyalgia is and how it affects me - kind of like those 'letters to norms'. I sent it to friends and family and I have had such a positive response from it - with comments such as "I never realised what you go through!" I thought I would share it with you (see PDF attached). Please feel free to use it for your own use, whether it's keeping it as it is, or using it for a basis for your own. I hope it helps someone :)
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Re: Explaining Fibromyalgia to others is not easy...

Postby helenfelen » Tue Nov 04, 2014 1:39 pm

Hi Pinkbeach, I think that you have a produced a well written and informative item! I am going to be cheeky and ask if i could take it but modify it to match my personal ailments & treatments etc? you would of course get a credit for the piece!? I completely understand if you don't want to though! I like you have several other ailments and am on a lot of medication but the main parts of it sum it up perfectly!
Gentle Hugs!
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Tue Nov 04, 2014 1:46 pm

Aw Thank you helenfelen :) Of course you can use it and change it up to fit your experience. Fibromyalgia affects all of us in different ways and I think it is so important for other people to understand it. Hope it helps you xx
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Re: Explaining Fibromyalgia to others is not easy...

Postby dotty lotty » Tue Nov 04, 2014 1:50 pm

Have just finished reading your article Pinkbeach and it is excellent. I have saved it with some others. I think you need some [chocolate] [chocolate] as well as an ice pack. :teddy-bear:
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Re: Explaining Fibromyalgia to others is not easy...

Postby jacson » Tue Nov 04, 2014 2:01 pm

Thank you pinkbeach you have put into words what I can't explain to friends and family. My symptoms almost mirror yours I would say by 95% both myself and my husband suffer with fibro so you can empathise with what we both go through on a daily basis! :crazy: Thanks again and keep positive.
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Re: Explaining Fibromyalgia to others is not easy...

Postby *Lisa* » Tue Nov 04, 2014 2:20 pm

I really liked the pictures and illustrations that you put with the information. :clap: :clap: :clap: :clap: :clap:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Explaining Fibromyalgia to others is not easy...

Postby Hannah24 » Tue Nov 04, 2014 3:36 pm

Hi,

I think this an amazing idea and I am glad it was a positive experience.

How did you feel doing it? I know this may sound weird but I feel too embarrassed to do it myself even with my family. I do suffer anxiety and depression and I worry about the judgement of others. Part of me would love for those closest to truly understand my condition but part of me tries to hide away from it. I actually feel more confident using it for work colleagues.

I hope that one day I will have the confidence to do this.

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

Postby pinkbeach » Tue Nov 04, 2014 3:45 pm

Thank You dotty lotty :) ah yes chocolate is always welcome! x
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Re: Explaining Fibromyalgia to others is not easy...

Postby dazzleship » Tue Nov 04, 2014 3:46 pm

hi pinkbeach

what a wonderful article, it really helped put into words about fibro. :-)

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

Postby pinkbeach » Tue Nov 04, 2014 3:49 pm

*Lisa* wrote:I really liked the pictures and illustrations that you put with the information. :clap: :clap: :clap: :clap: :clap:


Thanks Lisa! the images helped me sum up a point really quickly x
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Tue Nov 04, 2014 4:10 pm

Hannah24 wrote:Hi,

I think this an amazing idea and I am glad it was a positive experience.

How did you feel doing it? I know this may sound weird but I feel too embarrassed to do it myself even with my family. I do suffer anxiety and depression and I worry about the judgement of others. Part of me would love for those closest to truly understand my condition but part of me tries to hide away from it. I actually feel more confident using it for work colleagues.

I hope that one day I will have the confidence to do this.

Cheers Hannah x


Hi Hannah,

I know what you mean about being scared to tell people how you are really feeling. I was abit nervous showing my friends and family my piece. but I first of all wrote it for myself - to almost get what i wanted to say off my chest. I really enjoyed writing it - it was kind of therapy in itself. Then i just sent it to my parents and my boyfriend- whom new pretty much what I was going through. When I felt it even helped them understand it abit more, I then sent it to a few of my friends. When they reacted positively I sent it on to wider family and friends. To be honest it has really helped them understand why I do or dont do certain things and i feel much better that they have an understanding.

I think you will find writing about it therapeutic. You can decide who you want to see it afterwards, if work people are who you feel more confident showing, then that's a good starting place :)

Hope that helps xx
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Tue Nov 04, 2014 4:12 pm

dazzleship wrote:hi pinkbeach

what a wonderful article, it really helped put into words about fibro. :-)

:hugs:


Thank You! lovely to hear xx
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Re: Explaining Fibromyalgia to others is not easy...

Postby rubymoomin » Tue Nov 04, 2014 4:18 pm

That's a great explanation of how I feel most of the time. Thanks for doing that.

I was just wondering what you thought Harrogate Hospital was like? Do you had a name of someone you have seen that was understanding and how you get to go to the fibro clinic there? I didn't even know there was one!!

I am currently registered with Northallerton Friarage hospital but getting nowhere with the consultant. He wants to discharge me and has said i'm just depressed. *face palm* I'm desperate to find an understanding helpful consultant so as soon as I read you went to Harrogate and seemed to have some success I had to ask what you thought of it.
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Re: Explaining Fibromyalgia to others is not easy...

Postby pinkbeach » Tue Nov 04, 2014 4:32 pm

rubymoomin wrote:That's a great explanation of how I feel most of the time. Thanks for doing that.

I was just wondering what you thought Harrogate Hospital was like? Do you had a name of someone you have seen that was understanding and how you get to go to the fibro clinic there? I didn't even know there was one!!

I am currently registered with Northallerton Friarage hospital but getting nowhere with the consultant. He wants to discharge me and has said i'm just depressed. *face palm* I'm desperate to find an understanding helpful consultant so as soon as I read you went to Harrogate and seemed to have some success I had to ask what you thought of it.


Glad you found it useful :)

I have had many a 'face plant' moment dealing with consultants who don't have a clue about fibromyalgia. But harrogate hospital is where i finally got diagnosed and I can't recommend their rheumatology department enough. I saw Dr Gough and I think Dr Green and Dr Lawson are all up to date on fibromyalgia. I got referred from my doctor at Wetherby medical centre. The fibromyalgia clinic is basically an information session and physio program you attend once you have been diagnosed. They were very good there and getting an official diagnosis is important.

Hope that helps. x
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Re: Explaining Fibromyalgia to others is not easy...

Postby rubymoomin » Tue Nov 04, 2014 4:58 pm

Glad you found it useful :)

I have had many a 'face plant' moment dealing with consultants who don't have a clue about fibromyalgia. But harrogate hospital is where i finally got diagnosed and I can't recommend their rheumatology department enough. I saw Dr Gough and I think Dr Green and Dr Lawson are all up to date on fibromyalgia. I got referred from my doctor at Wetherby medical centre. The fibromyalgia clinic is basically an information session and physio program you attend once you have been diagnosed. They were very good there and getting an official diagnosis is important.

Hope that helps. x[/quote]



Thanks so much that is very helpful. I shall definitely be asking my GP for a referral there so I can leave my rubbish, unhelpful consultant behind! :-D x
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