Question re: lupus and fibromyalgia

chadash · Mar 16, 2006

(abridged) Often the family of my actual patients, these people, without any prompting from me, felt the need to tell me how sick they have been over the past few months/years as they are visiting their intubated relative who is on multiple vasoactive drips. Without delving into the specifics of each encounter, suffice it to say that on multiple occasions, different people with fibromyalgia displayed a similar pattern of abnormal attention seeking behavior. Those people undoubtedly had issues, any one of you that met them would come to the same conclusion, I promise.
QUOTE]
That is so strange, what you described has been my experience too. I don't doubt the validity of the disease, but have always been baffled by this. I have three sisters and a mom with this (and lupus?) and there is never a conversation it does not come up. I know from experience that it is real, they really are miserable, but I have seen what you described happening lots.
I hope it was ok for me to share that.

CHATSDALE · Mar 17, 2006

i hope that this is not determined to be psycho, attention getting attempt but dealing with an illness that is not generally recognized is frustrating

pms was once in this catagory but it is now more widely recognized except perhaps by a few husbands

perhaps the reason that they bring it up with health professionals is that they are interested to see if there are any new 'cures' that they have not heard of

however, i do not have lupus, but i have had problems with the fibro-cfs, i have been able to work. raised my kids alone, so i don't know what the md was talking about...

i have however heard some patients tell the things that the doctor told them when it was the truth twisted into plate of spaghetti

rn/writer, RN · Mar 17, 2006

From the tone of your post, saying she "claims" to have a seizure disorder, and these other ambiguous and very difficult to diagnose or verify medical conditions, I would agree with you.I know this is insensitive, but she sounds like a hypochondriac to me. I don't want to discredit the diagnosis of fibromyalgia, or insult anyone on this board, but in my limited experience, people with fibromyalgia oftentimes have psych issues (which kind of brings up a chicken or the egg question). The fact that this woman seems desperate for someone to tell her how sick she is, or agree with her, would make me skeptical too. Her symptoms could be psychosomatic, but in any case the doctor she should probably be seeing is a psychiatrist.

Consider, if you would, that the psych issues might be the egg, laid when a patient in need sees countless clinicians who don't take her seriously. I believe a good part of this stems from the fact that fibromyalgia is considered a "female disease." Many women have to see at least five doctors before they get a proper diagnosis and perhaps another five to find successful treatment to get the symptoms managed.

Then there are all the family members, friends, co-workers, acquaintances, etc. who feel compelled to assess and evaluate and give all kinds of advice and judgments and snarky little side comments. Who wouldn't have a few psych issues after that?

LoriAlabamaRN · Mar 17, 2006

Fibromyalgia is indeed very, very real. It is closeminded individuals who perpetuate the myth that it is a fake disease or all in your mind. It is not. I live with it daily. Very few people know I have it because of the stigma associated with it- the eye rolls, the dismissal. Shame on you for perpetuating that myth. You should keep your "limited experience" to yourself rather than insulting those of us who suffer daily.

chadash · Mar 17, 2006

Fibromyalgia is indeed very, very real. It is closeminded individuals who perpetuate the myth that it is a fake disease or all in your mind. It is not. I live with it daily. Very few people know I have it because of the stigma associated with it- the eye rolls, the dismissal. Shame on you for perpetuating that myth. You should keep your "limited experience" to yourself rather than insulting those of us who suffer daily.

That must be awful, to feel so badly then have someone roll there eyes at you.

I have a sister who went to a pain clinic and was sort of scoffed at, which just adds shame to the diagnosis.

I don't think the poster was really wanting to put down the diagnosis though, just was observing that in some of these patients, it is interesting when another family member is very ill, the fibromyalgia patient will tell the healthcare workers about it in that context. I have seen that many times and wonder why. It may be exactly what you said, no one takes them seriously, and they feel frankly quite wounded.

But, from my personal experience, I know for some this is debilitating. Two of my sisters can not work, one does but does not do any physical labor (she also has a tentative lupus diagnosis)...my mom hurts every single day. I guess if I hurt all the time, I would tell every one too!

My question is though, do you see this illness more frequently in women who have suffered abuse?

sphinx, BSN, RN · Mar 17, 2006

I can't believe that having a family member sharing her diagnosis is seen as attention seeking and as having psych issues rather than a genuine illness. I too, work in an ICU and I not only care for my patient, but I work towards a positive relationship with their family members by engaging in conversation. I feel I am doing a good job if they feel they are able to share their thoughts and feelings with me. I have had people share diagnoses with me, for example diabetes........so is this person attention seeking? I don't think so. Often times they are simply engaged in conversation to get their mind off the elephant in the living room, they will talk about their children, their illnesses, their pets, etc. I often squeeze education into these sessions, clarifying misconceptions, esp as they may relate to the patient.

I have neither Lupus nor fibromyalgia but find it reprehensible to dismiss sufferrers because they have a need to talk about their problems. Consider that they may very well be sitting their in pain and exhausted and frustrated that they can't do more for their friend or family member. They may just want to share this with someone they think they can trust, never knowing that you are thinking they must have psych issues and are inappropriately seeking attention.

Sorry to have gotten off the OP question here.

LeahJet, ASN, RN · Mar 17, 2006

Shame on you for perpetuating that myth. You should keep your "limited experience" to yourself rather than insulting those of us who suffer daily.

And I say Shame on those individuals that use the diagnosis to attention (and drug) seek. THEY are the ones that contribute to the stigma. I also believe that this is an "easy" diagnosis for MD's that have have it up to their eyeballs with the continous visits and complaints with all negative test results.

OK...please READ.....I am NOT trying to insult those that suffer with this disorder. It it very real to those that have it. I am merely contributing my experience to this discussion. And yes, I do have more than a limited experience. I have been an ER nurse for 10 years.

I totally agree with focker.

teeituptom, BSN, RN · Mar 17, 2006

but in my limited experience, people with fibromyalgia oftentimes have psych issues
I take serious issues with this statement. Since, admittedly, you have limited experience, how can you paint with such a broad brush?
For the record, I do have fibromyalgia. I have had it for 30 years. No psych issues here, though.
Why have serious issues with this statement,After all the decades of experience I have and the last 2 decades in ER. Lets face it the vast majority of FM patients, at least 80 percent are all at least a little bit off their rockers. ER is one of those places, that if you come in and tell me you have FM, I just silently think. "Oh God Another One". And yes the vast majority of those alledging FM, do have other problems, mostly psych in nature.
Now I never discuss their so called FM with them, I just ask what kind of drugs work best for them and let the MD decide how best to deal with them.
Personally I believe the easiest thing in life is to just give them all whatever they want to make them happy. And send them home with a smile on their face.

gr8rnpjt, RN · Mar 17, 2006

Why have serious issues with this statement,
that if you come in and tell me you have FM, I just silently think. "Oh God Another One".
And yes the vast majority of those alledging FM, do have other problems, mostly psych in nature.
Statements like yours above are just why I take issues with those type of statements. How dare you generalize a group of people like that?
What about Diabetics? I bet you think they are a bunch of whiners also!. All those demands for insulin and special food! I bet you "silently think", Oh God, not another one.
By the way, male nurses are the biggest bunch of dummies on the planet. They all secretly have psych issues. When I see one, I silently think Oh God, how soon before he comes up and starts bragging about all the people he saved in the ER.
How does it feel?
By the way, the above statement in no way really relates to how I feel, I was making a point.
And in the 30 years that I have had fibromyalgia, the number of times it has brought me into the ER=0
The number of times I have mentioned I have it in the ER=0.
The number of times I have been to the ER in the last 30 years=appx 6. for failed outpatient management of things like bronchitis or cat bite with cellulitis, etc. Nothing close to a dx of fibromyalgia.
number of times I have told a male nurse I had fibromyalgia-0

rn/writer, RN · Mar 17, 2006

It's time to review the Terms of Service regarding personal attacks. This is an interesting thread, but if it becomes a flame fest, it will have to be shut down.

Here's a thought. I believe there are many legitimate fibromyalgia sufferers out there, struggling to get a proper diagnosis, working hard to take care of themselves, and putting great effort into meeting their responsibilities (or feeling terribly guilty when they can't) I have two daughters with it and I've watched them deal with the frustration of trying to convince both medical people and family and friends to take them seriously. It can make you a little batty.

BUT instead of assuming that fibromyalgia is the main problem with the folks you guys keep running into, what if they are primarily psych patients who glommed onto diagnoses like fibromyalgia and cfs and the like, because they're difficult to prove or disprove and they require a lot of attention/treatment. With lupus, a doc can order an ANA and get some kind of clinical data. FM and CFS don't offer such objective information, making them very attractive to someone who is looking for a way to opt out of tough things and soak up some TLC.

These are the folks who give FM and CFS the bad rep that spills over onto the legitimate sufferers.

gr8rnpjt, RN · Mar 17, 2006

It's time to review the Terms of Service regarding personal attacks. This is an interesting thread, but if it becomes a flame fest, it will have to be shut down.
Here's a thought. I believe there are many legitimate fibromyalgia sufferers out there, struggling to get a proper diagnosis, working hard to take care of themselves, and putting great effort into meeting their responsibilities (or feeling terribly guilty when they can't) I have two daughters with it and I've watched them deal with the frustration of trying to convince both medical people and family and friends to take them seriously. It can make you a little batty.
BUT instead of assuming that fibromyalgia is the main problem with the folks you guys keep running into, what if they are primarily psych patients who glommed onto diagnoses like fibromyalgia and cfs and the like, because they're difficult to prove or disprove and they require a lot of attention/treatment. With lupus, a doc can order an ANA and get some kind of clinical data. FM and CFS don't offer such objective information, making them very attractive to someone who is looking for a way to opt out of tough things and soak up some TLC.
These are the folks who give FM and CFS the bad rep that spills over onto the legitimate sufferers.

Thank You Miranda! That is what I wanted to say but my anger took over.

My apologies to the board for my flaming post. I hate generalizations.

Multicollinearity, BSN, RN · Mar 17, 2006

There are definate troublesome patterns with many fibro patients. (Note I'm just a student so I'll limit my contribution to my personal experience for whatever it's worth!)

My mother has fibro. She also has borderline personality disorder. She too, has visited family members in the hospital in serious condition and blabs to everyone and anyone who will listen about how it reminds her of how sick she's been and her pain, her pain, her pain. I attribute that to the borderline issue of course, acting like a 2 year old and being self-centered. I know someone else who has fibro and she is a borderline also. She does the exact same thing. It is absolutely amazing.

I sold health insurance for many years and this involved taking detailed health history info for the written applications for insurance. I've had too many fibro clients to count, but they usually had similar attention seeking behavior that was inappropriate.

Now all of that said, I think this issue goes to the usual thing of noticing commonalities among groups and never making assumptions about individuals. Once in a while I would come across a client who had fibro but displayed none of the bizarre behavior. I don't doubt that these folks are in pain. But let's admit it - it is a catch-all dx.

I tend to think the ongoing research will help to distinguish those who really do have some sort of fibro syndrome v. the hypochondriac psych patients. I know there is already research showing that many fibro patients have differences in their CSF.