Fibromyalgia Support Group

I went to my friend, who happens to be a chiopractor today and during my treatment, I asked him what he thought of fibromyalgia. After taking a minute to think, he told me that he thinks it is a diagnosis that is thrown out there too much. He made sure I didn't think he meant me, but I was still a little upset. I wondered if he would have said that about carpal tunnel syndrome, or mental health disorders, or other diseases that you can't see. Has this ever happened to anyone. We have alot of work to do in educating the public, the physicians and even our family's about fibro.

I totally agree with you Sandi. The public has no idea wha its like to have fibro and when some goofball releases an article or does a news story when they dont have all the facts then it really hurts people like you and me and everyone in this group. I wish there was more we could do to get the word out and get people to understand just because you dont see the illness it doesnt mean it is not there.

I am going to purchase my own posters and pass them around for fibro awarenee day which is May 12th in case youo didn't know. I am also going to contact my local radio station and newspaprer and wellness clinic. I didn't even know what fibro was and I am a nurse.

You know, there must be something about chiropractic training that tells them this. Because, I work with the spouse of a chiropractor. She as much as told me that he feels that fibro. is a fake disease, given as a label to whiners who just can't handle the normal aches and pains of life. She basically agrees with him By the way, she doesn't know I have it. Boy did I have to hold my tongue! However, I think I'll be slipping her some literature soon.

That is so offensive to me. I know you said that your friend made sure to you that he didn't mean you, but what did he think you were feeling inside when he said that? I hate those off-handed comments that people try to get away with. To me, I feel people should think before they speak and thats hurtful. I think we have all encountered someone like that. I mean no offense to your friend, so please excuse me. I'm going to order some fibro pins online for my family to wear this May and my daughter wants a fibro tee.

We just don't need this stereotyping. This is why we can't get the help that we need. Everytime I dress up to go visit a family member or go to dinner, people think I'm better. But, I don't want to look or act sick. I do that all the time. I want to look good even if I feel like crap. I want to look like sexy crap. Is there something wrong with that? I'm still in intense pain and shouldn't have to prove it by not putting on under eye cream because I never sleep.

Summer

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I hate it when people think that just because they can't see it then it is not really there. I always feel bad but I try not to LOOK it. I don't want people to suffer looking at me. I just wish that people were more sensitive to our feelings.

I agree Kristina,

when people ask me how I'm doing, I always say, "fine", so then I get the 20 questions. So you are getting better? I could tell, because you have been looking better. That's frustrating.

Summer

I absolutely agree with everyone, these people have NI idea the amount of effort and courage it takes for us to just get out of bed some days! ANd the price we pay for trying to grin and bare it just dosen't seem worth it when you deal with people that aren't supportive! HOORAY for Fibro awareness! Just because people by the millions have it doesn't mean it's fake! Would a DR or anyone say those things to a cancer patient? I think not!! Not that this is any worse than cancer or trying to minimize the effects of cancer... just to be clear, does that make sense??

In understanding, Ruby

I totally agree! Well said! We fight a difficult battle because we have little to no support. Unlike some of the other more popular diseases. We have to prove our "unhealthiness" everyday, and what do we get for it? We don't get talk shows, walks all over the world, different colored shirts and appliances to draw attention and raise money for research. And that goes for all of the other overlooked diseases too. There are so many others that need money for research and I'm afraid that only 1 or 2 are getting a lot of attention. Lets spread it around. Michael J. Fox did his part for parkensins (sp?). But I didn't see many celebs backing him like the more famous diseases. Someone famous has to come out and say she/he has fibro. I know they are out there. The problem is that when they come out with that, no one will look at them the same. Look at Paula Abdul. She has a rare pain disorder and she is constanstly being made fun of.

Well, not all chiropractors are like Sandi's friend, in fact, it was my chiropractor who first diagnosed my fibro nine years ago, way before I had any idea what was wrong with me and when I knew next to nothing about fibro. I would say that up to this point he's been my biggest ally in fighting this disease, and he treats a lot of fibro patients. I get more of his time and attention than I do from my other docs, and up until now have received more help from him for my symptoms. I have also finally found a good family doctor as well and I am so relieved! It is so tiring and draining to have to play doctor roulette trying to find one that believes in fibro and knows how to treat it.

At first I was skeptical about that TV commercial for Lyrica, but even my kids responded well to it, and now seem to believe me when I tell them I am having a lot of pain with my fibromyalgia. It really is raising awareness about fibro and giving the disease credibility in the eyes of the public. That is the power of TV advertising in this country, rightly or wrongly. I am still careful about who I mention to however, but it seems that more often than not everyone I mention it to seems to know someone, a relative or friend, who also suffers from fibro or CFS. Sooner or later I expect that some big celeb will come forward as a spokesperson for fibro. Teri Garr came out about her M.S., and Kathleen Turner about her rheumatoid arthritis. I think that most people now accept that fibro is a legitimate disease, but they don't know much about it. They don't know or understand how much we suffer or how greatly it impacts our lives and ability to function on a daily basis. Most people are not aware that there are flare ups and other times when we are feeling not so bad. I'm glad there is a fibro awareness day!