"But my friend Annie is doing so well with her fibro!"

I understand that feeling completely. What people need to realize is that every case of fibro is different. No two people have it exactly the same. Some may have it more severe then others. I get alot of crap from my family too, so trust me, you're not the only one. I'm trying to college and its not working so well and my parents keep throwing a fit. They just don't understand how hard it is.

As for your questions I don't know if fibro really "gets better" for anyone. I know some people who have an easier time with it once they are put on the right medications and are just dealing with it better, but that doesn't mean it has actually gotten better. As for what to say to your family. I think you should tell your mom how all cases of fibro are different. That maybe Annie has a less severe case and that's why its easier for her. And for the rest of your family, if they don't understand, do some research and print out some readings for them to take a look at. Maybe they will understand a bit better then.

Good luck hun!

Gggrrr! Sounds like my family and friends who keep referring to the 1 and only other person they know with FM besides me..."But Becky is teaching YOGA classes now and she feels great! See?" (Then they sit there and look at me with this pathetic, desperate look on their face...I dont know if I should be angry or sad that they are so desperate for me to be healthy!)

That's what I thought, Sherrine, but I am still pretty new to this. My sis told me to try Cayenne pepper. I was wondering if I was supposed to rub it on or eat it.

I think the hardest thing for me was to realize I had to build up my endurance again when I had endurance before this dumb fibro hit me. And . . . knowing it would not get back to what it was before. Bleh
Sue

My family is well-meaning but they don't understand it. My one sibling who has had fibro for 15 years is kind of distant from the family, and I can understand why. It feels so isolating, and my family is anything but hands-off; they are demanding, in their caring. I have made an extra effort to help my family understand how I"m feeling, by putting in ways they can understand. For instance, I had to stay home today from work due to pain. I haven't had to do that in a few months. My boyfriend, bless him, is trying to understand what he can do for me, so I tried to explain it to him in terms he can understand. I used an example from science fiction- in the movie "Dune" when the Kyle MacLachlan character has to stick his hand into the box that causes pain, and he cries out when he can't take it any more, and then pulls his hand away, thinking it is going to be all mangled from whatever he thought was happening to it, only to see his hand whole and unchanged. I said, THAT's what FMS feels like! So I just try and use different ways to illustrate what I'm feeling. Good luck.

Thanks everybody - all good stuff from you. You've helped me feel better that I'm not alone in this misunderstood disorder.

Some people have found ways to manage their fibro so that they do really well. But it never really goes away. There is no cure for fibro. My mom has recently taken to talking about all these people that she knows with fibro who work and do just fine. She has been trying to get me off lortabs. Any time she talks about these people, I always wonder to myself what medications these people are taking to make it through to be able to work. I am sure some of them are on tabs just like I am.

It drives me crazy when people talk about people they know with fibro who live perfectly normal lives. But, do they really see the pain they are in? Do they really see the toll it takes on them to work? Do they know all the meds they are taking to make the pain more tolerable? I mean, unless you live with that person, you can't really know everything they go through to deal with the pain. They don't know if they go home every night or morning or whenever after work and just collapse. And because they don't know, I really don't think that they should bring any of it up. But, that could just be me.

is there any way to get these uninformed people to read articles on fibro or even the book called "fibro for dummies" [ havent read it myself but have heard it is really good] ? i have even shown my husband chat on this site so he could see that we are not all just crazy or lasy. before i was diagnosed my husband used to start the day with the question "well.......what hurts you today"?i actually felt guilty for feeling so bad and wondered if i was just a hypochondriac!!!!please get some satisfaction from knowing that we feel for you and understand completely. i am so grateful for this site.......i really appreciaate the people that started it. good luck to you.. you have alot of friends here...me included.

hi,
I can go for months without a flare up but it's never ''cured''. Even when i'm not having a bad flare up it just seems manageable, the mishmosh of words never goes away and my friend of 20 years says that even in secondary school she always hung on the last word i'd say before my face goes blank as she know's the next thing i'ii say is ''what was i saying''.

I've also seen how little people listen to you in everyday encounters as the people that don't hold the conversation for me weren't listening in the first place. It happens a lot. Does that make sense?

I had two Dr appt's today.

My PCP this morning who stated "Unfortunately we do not know how hard Fibro will hit any individual, or who will have seeming remissions".

Pain Mgmt Doc this afternoon saying "Fibro will disable some while some will be able to manage without an type of treatment".

While searching for alternative treatments or "cures" I came across a Treatment Facility and a testimony from a Husband who's wife had been successfully treated. She is almost sumptom free unless there is a weather change or a full moon. I wonder if we all have Lycanthropy, and the pain is our inner wolf attempting to escape!