The Dreaded Fibro Diagnosis

ok-let me start this off by admitting this is my rant of the day. As positive as I try to stay, sometimes people can just set me off.

I belong to another board here. This in no way is a knock on the board or mods-usually the board is fantastic. A person started a discussion because she is newly diagnosed and was also diagnosed with fibro-she appears scared and confused and obviously looking for support. Quite a few people wrote in telling her to question her fibro diagnosis and one actually said they refused to have that diagnosis applied to themselves because fibro patients can be considered drug seekers and hypochondriacs. Needless to say-this makes me very upset.

When my rheumatologist told me I had fibro, yes, I was upset. But after thinking about it, I was actually happy to be diagnosed-I realized that maybe some of my pain could be treated. I can now sleep without the pain/aching in my feet and ankles keeping me up all night. Thank god my rheumy caught it!

With all the studies being done on fibro, are people still this naïve? If you had the chance to lessen your pain by simply being diagnosed with fibro, wouldn't you take it? Do people really care that much about what someone thinks of them? I know with the pain I've been in, I could care less about what anyone says or thinks-I just want the pain to go away.

I know there is still part of the medical community who are uneducated about fibro, believe me I've worked in the medical field for 25 years. But if you have a good rheumy and they know what they're doing you will be treated with the respect you deserve.

I guess I just want to stand up and say proudly-We're here, we have fibromyalgia, get used to it!!

HI SueM33

It is sad but their are still many people that think fibro is all in your head. My rheumy doesn't treat fibro. She leaves it up to my primary doctor. I think where we live also plays a part. When I see a new doctor or go to the er when they hear lupus and arthritis it goes pretty well. When I add in fibro their whole attitude changes. I have learned not to care what people think their is nothing their way of thinking can do for me.

I hope the person will join our group also.

Their have been many people who have used fibro to get pain medication and such. This does make it harder on those who have it. I worked as a nurse for many years and actually had a doctor tell me he had people come in and tell him they needed disability and pain meds because they had fibro on their first visit with out even being check yet.

I hope things change in the future it is sights like this and education that will make things better.

Hi Sue, I do understand exactly what you are saying !!! I was apart of the medical community for 25 years and there are so many that were tough fibro is a psychological disorder and unfortunately they just don’t understand … I was one myself , and yes when you say fibro you are categorized as crazy . I pray that as new dr & nurses go through school they are more accurately educated ! I have actually lost friends from the medical community because they refuse to believe in fibro…
So our only option is to not care what they think , we know the truth , we know the pain and fatigue and we are the ones who have to live with it !
So we press on , trying to raise awareness and get the truth out :slight_smile:
It does sadden me to think that there are people on bens friends treating someone newly diagnosed with misinformation … Just send them here !!!

Hugs & blessings
dee B

Hi Sue,

I'm flabbergasted by these people's thoughts on fibro. Talk about denial! I'm willing to bet that several of them also have it, if they have an auto-immune disease. The two illnesses usually go hand in hand. But we fibro people know that we're okay and are NOT drug seekers. I'd be just as happy to toss those pill bottles away for good. But we can't.

If you meet another person of this mentality, here is some excellent research to forward to them: If they read that article and still are clueless, then you are really dealing with someone VERY thick! And good for you for questioning this mindset!

Hi All,

Thanks for your responses-I just had to let that out of my system. I did post a bit of a snarky comment on that board, which I never do, but I think people should really be careful when giving advice regarding diagnoses. I'm sure none of them care, since I am one of those "crazy" people with fibro. By the time they got done tearing her up over fibro the poor woman was apologizing like she'd asked the wrong questions. Way to be a supportive, caring group, huh?

I did tell her to come on over here and that we are a warm, friendly, and most of all SUPPORTIVE group. I also told her there is NO SHAME in having fibro, as the others led her to believe. I just hope she doesn't stop her meds due to what she was told. I really hate when people start comparing diseases, like one tops another. I suffer, like a lot of us, with multiple auto-immune diseases, but I have never considered one more "prestigious" than another-pain is pain no matter what's causing it.

Petunina-your absolutely right that some of those people probably have fibro. My doc told me that it was inevitable that I would get it due to the constant pain signals being signaled to my joints. He said eventually they will start misfiring and that he sees it all the time with patients in chronic pain. Oh well, I guess they would rather be in pain than admit they have it for fear of what other people think. Personally, I don't give a darn what anyone thinks and I am fortunate to have a rheumy who's knowledgeable and treats it. Believe me, I thank my lucky stars for him!

Thanks guys for responding. You are the best Moderators on Ben's Friends-some could definitely learn from you all (oops, starting to get a little snarky again :).

Thank you Sue! We do need to raise awareness somehow. It's difficult to go through what we go through and have to deal with the doubters.

I have started being really honest with my friends. I send them emails with links to different fibro information I find useful (like the spoon theory and others). Some appreciate it, some don't. But, I'll keep sending them. I am being more open and sharing links on facebook (that one has been harder for me cuz it's such a mix of people).

I worked in the medical community too. My highest ranking boss had fibro! She was an inspiration to me and helped the providers learn about fm. I think word is getting around.

I am trying to educated my two adult daughters without making them feel sorry for me. I don't want pity I just want to be understood. I do the same with our two adult sons. We have some mental health stuff in the mix so I am keeping busy being the family informer.

We need to spread the word! I am all for awareness. Thank you for setting this person straight. We are not victims. We have an illness.


Hi Tina,

I'm so sorry you and so many others are treated this way. I, too want my old life back and on my bad days mourn for it. It seems a lot of people here have to be treated separately by a PCP for FM. I read an article not too long ago on Medscape regarding why new rheumys don't want to treat FM patients-it really pissed me off. I'll see if I can find it and post the link. Basically it was because FM patients don't get better and it's a "bummer" to treat them. The doc who wrote the article is trying to change that. But if a rheumy isn't the "specialist" for FM, who is? This is where we, as patients, have a problem.

I know I am lucky to have a rheumy who does treat me, but I had to go to a lot of bad ones before I found him. One told me I was too young to have arthritis(even though my CRP and sed rate were through the roof-he blew my mind!!) and another one switched my bloodwork with another patient and told me I had Hepatitis B (don't even get me started on that one!!). I know location is a big problem for some-there just isn't a big choice in rheumatologists.

In 2014 I am going to make an effort to bring more awareness to this issue. Unfortunately, the people who have to fight is us, and we're all tired and in pain :)

In an unrelated issue, I think it's bizarre that so many of us work/previously worked in the medical field. It makes me wonder if there is some sort of connection, like exposure to a virus or something. That's a whole different ball of wax to consider.

Big Hugs to you Tina!!

Here is the link to the article I mentioned.

Fibromyalgia: the choice is yours