People that don't have fibromyalgia don't believe how much you hurt
Allison - Dec 9th, 2005 6:37 PM
[ Original Post ]

How can you get help

Comment


 

Karen - Sep 25th, 2005 8:58 PM

Hi,
I hate to tell you this but that is another downside to this stuff we have. To the naked eye we look very normal. But on the inside we are crying in pain. People don't mean to be insensitive. They just don't understand. How could they possibly know how much we hurt if they have never had anything like this in their life? The only people who really understand is those of us that have it and live with it everyday. That is why these forums are important. You get the support you need 24/7. Please keep coming back and talking to us. You will be suprised how much better you will feel. Have a good day!


Friday - Oct 2nd, 2005 9:37 PM

Allison, what I've done is take the best things I've found on the internet, put them all in one document, and printed copies for my friends and family members to read. Then they can actually advocate for you to others! It doesn't solve the problem, but it helps!


Jean - Oct 9th, 2005 8:32 PM

Allison is right. Before you can get the support you need you need to educate your family and friends about the condition of Fibromyalgia and Myofascial Pain Syndrome which often runs with this condition.


mona - Nov 6th, 2005 2:37 PM

have you ever see a letter to normals
i will find it and print it



CharlieJ - Dec 9th, 2005 10:32 AM

"Friday" is exactedly right. YOU have to educate your friends and family. Most people think -- you look normal, so you should BE normal. Well, that's just not the way it is with fibro. We don't have sores, wounds, disease symptoms or widespread knowledge "on our side". FMS is internal and the pain is real. BTW, if it makes you feel any better (pun intended), men with FMS have things a bit worse than women. We are thought of as wimps, wusses or crybabies when we discuss our symptoms. After all, I'm a middle age, strapping male figure... who happens to hurt so bad I can hardly pick up my 5yo to kiss him good night.
Even if it takes printing out a document (the NIH Publication No.04-5326 is a good one), educate your friends and family. They still may not fully understand or empathize, but at least you've given them an opportunity to learn more.


Jean - Dec 9th, 2005 6:37 PM

Hi Allison: That is true. Even doctors have a hard time with that. Well, you know you have it now you have to educate the people around you about it. Then they will be able to understand and be more supportive in your pain management. Having the support really helps. Get the information from your Rheumatologists office and seek more info on the net. Go to:
www.sover.net/~devstar/cmpsdef.htm
This can be a start. Also this site gives you some insight to help educate your family and friends.