Friends say....'What the heck is fibromyalgia?'...... i say?

All your fibromyalgia experiences, questions and answers.

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Friends say....'What the heck is fibromyalgia?'...... i say?

Postby kazisedso » Wed Jul 17, 2013 8:51 pm

Hi all,
Hope you are all ok

I had a lovely weekend it was my daughter's baby shower and She had a bbq, but, i paid for it monday and tuesday of this week, with extreme fatigue, feeling sick, and mega pains :yikes: :yikes:

Feeling a bit better today.......

Back to the title of this post..... whilst at my daughters baby shower i was asked by a few of her friends what was wrong as i am now walking with a limp and a stick..... told them i was dx'd Fibromyalgia and the blank expressions said it all :-? :-? Also went to my hairdresser today and was walking with my stick and she asked the same thing... so said Fibro .....

The thing is how do you explain it to someone that doesn't really know, without going into your entire history.... i tried to say it was a chronic pain and fatigue condition, that causes a lot of aches and pains all over and that i have particular problems with my right hip wrist and etc, etc...... they still aren't sure what i mean... so i often have to say it's kind of like arthritis, but i feel like i'm lying when i say that, but, they then seem to get it...
I do say that it does not degenerate the joints like arthritis and that seems to pacify them, but i don't feel like i have explained it properly.
I do find it difficult to explain, i get flummoxed trying to tell them what it is.
But, i am still learning myself :shock: :shock:

what do you say when some one asks you.... especially when they haven't got a clue what you are talking about!!

how do you put it in layman's terms??
I don't articulate myself very well and some people that i know with fibro seem to explain it in just a few words but make sense.....
i go round the houses trying to tell folk what it is lol
Anyone else have this problem??
Thank you
Karen
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby Lemonzest2012 » Wed Jul 17, 2013 9:00 pm

Those I have explained to, forget within mins of hearing it, they just seemed to want the normal platitudes of "Oh I'm fine thanks, you?"

My friends did not want to really know. I hope its different for you.
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby dallasuk » Wed Jul 17, 2013 9:00 pm

Hello Karen & Hugs hun :)

Glad you had a fun time but it sucks we pay for good times after :(

I try to explain it as the aches/pains & fatigue of flu, with added whiplash :( :(

That normally stops people asking more as the tend to get what i mean :) :)

Hope this helps sweetie :)

Take care
Tracy xx
Last edited by dallasuk on Wed Jul 17, 2013 9:07 pm, edited 1 time in total.
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby karen59 » Wed Jul 17, 2013 9:03 pm

Hi Karen I think we all struggle with this one - I tell people it's muscular rheumatism which most people accept without further explanation as rheumatism is something most people can relate too! Keep smiling and having fun :-D
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby CarlyJayne » Wed Jul 17, 2013 9:07 pm

I tend to attempt to explain the nerve pain by explaining that if I hit them with a hammer they would only feel the pain because their brain sent a signal. With Fibro my brain has a party and throws off some shapes, sending incorrect signals so I feel pain (without a hammer in sight). This sounds long winded but it's much quicker to say than to type! Xx
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby Flash » Wed Jul 17, 2013 9:54 pm

Karen, fibromyalgia is a condition recognised by the Arthritis Research Council so you are not lying when you say it is a form of arthritis. Even though it isn't degenerative like the other forms.
I found out about F/M from my step mum who read it in a book about all forms of arthritis. It is explained as a rheumatic condition of the soft tissue. It also said that a large percentage of F/M sufferers also have osteo or rheumatoid arthritis or are predisposed to it. But that was written twenty years ago. Attitudes have changed since then even amongst sufferers but I think that explanation just about does it. Take care. X
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby kenco1973 » Wed Jul 17, 2013 10:52 pm

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.


Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.

Have a nice day!!
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby *Lisa* » Wed Jul 17, 2013 11:08 pm

I say i have severe chronic muscle stiffness all over which results in severe pain and fatigue. Then i say the symptoms mimick that of M.S and Lupus and then they sort of understand but sometimes (depending whos asking) i just say its too complicated to explain :roll:
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby denys » Wed Jul 17, 2013 11:13 pm

I tend to tell people to ask Mr Googley
Denys

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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby *Lisa* » Wed Jul 17, 2013 11:19 pm

denys wrote:I tend to tell people to ask Mr Googley



LMAO :lol: :lol: :lol: DR GOOGLE at the ready :lol: :lol: :lol: :lol: :lol:
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby FluppyPuffy » Wed Jul 17, 2013 11:57 pm

Dear Old Dr Googley, always ready with his Mega Encyclopaedia of Pills, Potions and Pawlyness :lol: :lol: :lol: :lol: :lol: :lol:

I usually find that mentioning chronic fatigue seems to register with most people who have asked me about things, so I tend to leave it at that as going into much more detail can be so draining, esp when it's someone who doesn't really want to listen :tongueout: :tongueout: :tongueout: :tongueout: :tongueout:
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby lurcher » Thu Jul 18, 2013 2:25 pm

I mentioned FM to my neighbour who is a nurse and fully understood the situation, but the nurse at my surgery was saying they are told never to ask patients how they are keeping as it takes up to much of their time. The nurses at my surgery sit and stare while you are talking and have virtually no reply, if they do it is nurse speak. :roll:
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby chookie » Sat Jul 20, 2013 11:23 am

It's a bit like Chronic Fatigue but with more pain.... then I get asked no more questions, seems to keep them quiet after that :-?
Fibromyalgia, M.E, IBS, General Anxiety Disorder, Dyspraxia, Discalculia
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Re: Friends say....'What the heck is fibromyalgia?'...... i

Postby smiler22 » Sun Jul 21, 2013 8:03 pm

hi I just say arthritis shows up on xrays and tests fibro doesn't. but I can be in as much pain 24/7 like someone with arthritis. if you put an elastic band around your finger. you would need to take it off after say half hour. but for me im in that sort of pain nearly all over mainly my back and arms. but I cant take that elastic band off. it is muscle and fibre pain. that also feels like its in my joints. some days I cant even have a hug as t can feel like im being crushed. just a simple nudge can feel like im being punched. ..... I use these in variations deepending on who im telling.

for a child the last one said to me why are you on your stick still auntie . I said you know when you have bad tummy aches, and it makes you cry. but it goes away after a few days. my back legs etc hurt nearly all the time but the pain doesn't go away. that's why I need a stick as I go all wobbly like jelly on a plate. then I usually sing the jelly on the plate song lol.

there is no right or wrong way. as we are all affected differently by fibro. yes we have many effects the same. but I know some who are bed bound and others who are full time working etc. etc .
live life to the full as life is what you make itxx
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