I never discuss this with anyone..there is a woman who walks past our house almost everyday...several times she has invited me along and I always decline...my husband said, why don't you just tell her why, and I said this is my personal pain...something I live with every moment, I do not know this woman that well, and I do not wish to confide in her all my reasons...cause NO matter how hard you try to keep it Simple...there is No way to Do that...once you start talkin about Fm...or CFS...it ballOOns into the millions of tiny fragments of conversational pieces..
I really try to keep myself as light as I can...shareing only with my friends here that understand without all the Extra explaining...and of course my best friend Dean...my love for life...that is enuff for me

My closest friends and of course my family all know about all that ails me. It is quite the list too.

When they ask how I am I give a one or two word answer. If it is at its' worst they can see it in my face or hear it in my voice. The nice thing about only being around close people.

Long ago, I did my explaining, just once or twice and that was that.

I do not believe in the 'stigma' of chronic pain. I am not well and that's that. If people who were or are in my life don't like my being sick,, screw em, I have to much hurting me to deal with drama, and the pain of being upset at those closest to me.

Ouch

I completely understand what you mean. Sometimes it is really hard to stay positive and talking about it with people who are close to you that try to understand is good. The well-meaning advice can be annoying. I have lupus and fibro so some of my favorite pieces of well-meaning but let's face it stupid lol advice is:
Maybe if you just exercised more... or maybe if you just took a hot bath... or of course everybody's all time favorite you don't even look sick. So I try to keep the specifics to myself also. However, I have learned over the years that sometimes I have to at least explain that I have lupus and now recently dx with fibro so that if someone's asking me to do something I can give them the real reason why I can't. It used to bother me but now I know that I didn't ask for my chronic illnesses so why should I feel bad for taking care of myself by sometimes having to say no to people. If I don't say no and just be in denial then I end up in the hospital which upsets my kids and my family which I really don't want. So I decided from now on I admit when I am not well enough to do something and I tell the person why. I have my Mother (thank God for her to whine to) It's kind of funny because it always seems like we Moms always get to be the ones to listen to all the whining no matter how old our kids get. But I know I wouldn't have it any other way. I want to be the one my kids come to when they need comfort just like my Mom. However, there is always The best comforter, friend, father, and He is always for everyone and that is Jesus. Without Him I would be nothing and would never be able to deal with my life with this chronic disease. We are never alone we always have God and His Son Jesus.

I say very little to others. O don't complain to family members pr friends for fear of sounding negative. Well this is with the exception of my daughter. She understands quite a bit, she has RA. I guess I save my whining for this community. I come here for comfort and to lick my wounds. I liv alone and have just moved to a new city and have only my daughter near. I try to becareful not to become a sadsack millstone aound her neck. I want desparately to make a life here. It is so hard, cuz all my energy goes to just day to day survival. I feel like I never make any progress and I haveso many things I wnat to do. Anywat, this is one woman's perspective. sue

BLESSINGS AND CURSES, I BELIEVE RIGHT NOW THIS IS A NEGATIVE DISEASE FROM LACK OF KNOWLEDGE, BUT SO MANY OF US TRY VERY HARD TO KEEP A POSITIVE ATTITUDE TOWARDS IT ALONG WITH OUR FRIENDS AND FAMILY MEMBERS. I DESIRE TO KEEP MY SELF POSITIVE AND NOT LET EVERYONE OUT IN THE WORLD KNOW ABOUT WHAT THEY DON'T UNDRESTAND. WITH MORE KNOWLEDGE WILL COME UNDERSTANDING AND HOPEFULLY ONE DAY A CURE.....LOVE...HELEN

This is a good discussion. I agree with you. Having a few close friends who are physically close to you would be all ya need. And you are lucky if you find even one, in my experience. I havent found that person yet, have no one close to lean my head on. Specially not family. My church family is GREAT too, but I usually dont want to bother them because they have their own crap to deal with. My therapist tells me all the time that he's worried about my lack of close personal support system. I tell people about my condition the first time I meet them. Thats it. Unless they forget and ask for me to "bring in some heavy boxes from the trunk of my car"! LOL Then I gently remind them I cannot do so. Anyway, I'm pretty foggy right now and probably not making a bit of sense...lol. Go ahead...you can laugh at me...I do!! Toodles! _Dawn

I believe the secrecy surrounding this disease already makes it okay for the government and insurance companies to deny benefits. None of you would want your child to suffer in silence so why should you? I understand and support your decision whatever it is but silence has it's downside and that downside allows greedy insurance companies to get away with not paying and the government to continue to deny this is a real disease with real reasons for its cause. Lyme disease and mold exposure are two of the most common reasons for this disease but we have been told that a cause is not known and that a cure doesnt exist when in fact the quicker these diseases are detected and treated the better the outcome for the patient.

I respect and admire your stoic stance on this disease and I mean no disrespect but I am one who will not suffer in silence when I know the truth about this disease and the cover ups that exist. I complain loud and clear to anyone who will listen and I educate and help others discover why they have this disease. For that I am proud. You are okay in my book and so am I.

There is no medical advice here and this is my opinion.

I have discuswsed Fibromyalgia with another person at my church who has it, and she suggested to me that we should have a group since there are four women that have it that go to my church. Other than them, I do not confide in my friends and only if my doctors ask me do I let them know, especially if I am having surgery etc., on my mouth etc. since it hurts a lot when I open it all of the way.

I keep it to myself also except for those closest to me. I never want to become my illness. I want to be approachable and someone people want to be around.

I love DS for that reason because this is where I can just be me and not be judged.

Deep down I am an eternal optomist and hopeful.

Right now I am in pain. My legs won't let me sleep. I can say that here and you understand. After an hour of being a contortionist in bed I got up and can come here and read and hopefully the legs will stop hurting.

In the real world nobody wants to hear that. I keep it light and pleasant with them.

I do not say anything anymore outside of here which is why this site is so important to me. My family who I tried to get them to understand just bascially labelled me as a hypochondriac.I however have learned to say no if People ask too much of me and will say why if they ask.People who have a real person in their life that understands are very lucky indeed. My late husband did his best to understand and help me. I don't think anyone who hasn't had it can fully understand.I do miss my dear husband and his support. marilyn

I agree with Sharon. I think we should help spread the awareness about this condition! If we all keep quiet, when will people start accepting it as a real and painful problem?? I speak up about it and my chronic pain if it comes up...and it usually does at some point. Then I offer to give out a DVD on Fibro that I have to others that have the same condition. You will all be so surprised at how many people do have it! If you spoke up, you would know. And maybe make a new friend. =) We need to be our own advocate. I'm not saying go whine at everyone about your problems...but if it comes up tell people and if they want to know about it, explain it to them. If they don't care, then don't push the info on them. But you will be surprised how many people asked me what it was like and what treatments I use. Many people know someone with Fibro or have it themselves. You would be surprised!

Jessica

Loraine, don't you think you should tell your doctor all of your conditions? Maybe I read your post wrong, but I thought you said you didn't tell your doctor you had Fibro.

I tell everyone and anyone. I'm not ashamed anymore. I have an illness and I know my limitations. I'm not going to knock myself out anymore trying to please anyone when it could be detrimental to me.

I'm practically yelling it from the rooftops. It does feel better. I've met so many others that have FMS and it feels good to meet someone in person who knows what I'm going through and possibly able to help them.

I keep my doctor informed on any new treatments and getting her to do her job better. Wouldn't that be nice if everyone had an understanding and knowledgeable doctor?

I told my boss at work and she's very understanding and helpful. I tell her that I'm unable to move a table myself but can if I get someone to help etc.

Others won't know what we go through if we don't TELL them. Inform someone new today.

After 10 years of not accepting various invitations with one excuse or another, I now say clearly and kindly that I have fibromyalgia and can't do such-and-such activity that evening. I briefly explain what fibro isif they don't know. Then for future evnts my friends understand if I say it's too painful to do a certain thing. End of making excuses. It's all up front, short and sweet. It took me a while to be brave enough to say fibromyalgia without shame. I have nothing to be ashamed about.

Im like carrie I say it loud and clear!!!!!If the people i talk to about it dont understand what it is I educate them..I am not ashamed of my disease.And because I feel so passionate about fighting for a cure I feel the more people who know the better