Explaining Fibromyalgia

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Hiya, how did you explain fibromyalgia to your friends and family?
 

sureimsore

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Well, didn't really have much explaining to do. These days, I think most adults have at least heard of the term. My friends and family didn't question anything.

I could see where some explanation would be needed with children though, but all my nieces and nephews are grown so that's no longer an issue.
 

Quando62

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Hiya, how did you explain fibromyalgia to your friends and family?

This is an awesome description of what it feels like to live with Fibromyalgia and Chronic Pain. I have seen other people post this in other groups. I have read it before many times elsewhere and thought that it would be a good idea to post it here too. Feel free to print it out and or read it to people that you feel would benefit from it. I have read it to a few people and emailed it to them and printed it out and given it to a few people too. It is so difficult to explain to people what it is like to live this way. I feel that this really sums it up. It may sound depressing but it is so very true and it to the point of what it is like living with Fibromyalgia. It is not sugar coated. It is what it is.
I hope that this is helpful to you. You are not alone. Smile-grey
 
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DK_engineer

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I find I need to give them information in bite-sized pieces so they can absorb it.

I usually start with explaining the pain. Most people can relate to how it feels when you stub your toe and it really hurts at first, but then the pain rapidly dies away. I explain that doesn't happen because your toe suddenly healed; it happens because the spinal column and lower brain work together to dampen and filter the sensation of pain. In people with fibromyalgia that process is broken. Instead of dampening and filtering pain, the spinal column amplifies pain. How much it amplifies noise and what should be normal touch to the level of pain can change from hour to hour. I usually stop at that point unless they ask questions.

From there I explain symptoms on an as-needed basis. The amplifier analogy helps as the basis for other explanations (ie, if I get overtired/stressed/sleep deprived the pain amplification gets worse).

Hope that helps, this is a tough one to talk about
 
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Thanks everyone for replying and for the great advice!
 

Eyesup

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I can't remember what thread it's posted in but there is a great blog on the Internet called the 12 spoon theory. I would call it a must reed. Also I have suggested I clamp a vicescripts onto my husbands biceps as tight as it would go and he spend the day like that and then imagine almost your whole body in this state day and night. He declined and has never questioned me again to do anything when I didn't feel like it he also stared picking up some of my slack cheerfully!
 

Trellum

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It was hard, but they already knew I had been in pain for a long time... since I was a teen. So to them was just a new name for my chronic pain and my other odd symptoms. But you know... no matter how well you explain something like this to your loved ones... because unless they experience chronic pain themselves, then there is no way they will truly get you. And that is something you need to cope with too. At this point I am used to it, I no longer care if they believe me or not or if they empathize with me, because at this point I have almost come to terms with this.
 

cynthia

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I can't remember what thread it's posted in but there is a great blog on the Internet called the 12 spoon theory. I would call it a must reed. Also I have suggested I clamp a vicescripts onto my husbands biceps as tight as it would go and he spend the day like that and then imagine almost your whole body in this state day and night. He declined and has never questioned me again to do anything when I didn't feel like it he also stared picking up some of my slack cheerfully!

Thank you so much for the mention of the 12 spoon theory - I just looked it up online and I feel like it describes my husband perfectly. We've found it somewhat difficult trying to explain fibro to others, so that 12 spoon theory might be something we need to print out for our other loved ones to help them make sense of it all.
 

oportosanto

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There are quite a few theories, but we need to realize in practice what works for us.
 

WarriorPrincess

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I've tried just about everything possible to explain the experience to those in my life (and many more who used to be in my life but no longer are, but as @Trellum mentioned, if they don't experience it for themselves, many often will never understand. Thankfully, some are more understanding than others, and can try to put themselves in our positions. I like the amplifier example given by @DK_Engineer, I think that may help some to understand, and could be worth a try.

There's a new television commercial, I believe be Excedrin, about a girl who experiences Migraines, and they create an experiment wherein her mom is able to experience some of the symptoms (distortion of vision, etc.) that she does, and I hope someday that type of thing exists so that others are able to experience even for a short period of time what we go through on a daily basis. The fact is that many will still doubt you and I've found it best to limit my interactions with those types of people. I can't help what someone else chooses to believe about what I'm going through, but I can choose to walk away from those who make my life more difficult.
 

diamond

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I did a post a while ago under " Giving in to the condition by Gemma rowlands ' with three good letters to 'normals' explaining fibro....there are videos on utube that help too.

Good Luck and Take Care
 
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chelsknits

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I've tried just about everything possible to explain the experience to those in my life (and many more who used to be in my life but no longer are, but as @Trellum mentioned, if they don't experience it for themselves, many often will never understand. Thankfully, some are more understanding than others, and can try to put themselves in our positions. I like the amplifier example given by @DK_Engineer, I think that may help some to understand, and could be worth a try.

There's a new television commercial, I believe be Excedrin, about a girl who experiences Migraines, and they create an experiment wherein her mom is able to experience some of the symptoms (distortion of vision, etc.) that she does, and I hope someday that type of thing exists so that others are able to experience even for a short period of time what we go through on a daily basis. The fact is that many will still doubt you and I've found it best to limit my interactions with those types of people. I can't help what someone else chooses to believe about what I'm going through, but I can choose to walk away from those who make my life more difficult.
I've also encountered a lot of people that doubt me. Just because I'm young and seemingly healthy, they think that it's impossible for anything to be wrong with me and that I'm just making up excuses or being lazy. I have one cousin in particular who can will tease me when I say I'm not feeling well and don't want to go out and do things. It can really get to you after a while. I've gotten to the point where I'll gladly try to explain it once to someone but if they choose to continue to be ignorant and insulting, I don't continue to try to get them to understand. It just isn't work the emotional toll it ends up taking on me. People don't realize how some of the things they say hurt people, especially when it has to deal with a medical condition.
 
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