Could some folks be misdx'd with fibro?

Discussion in 'Fibromyalgia Main Forum' started by lurkernomore, May 11, 2007.

  1. lurkernomore

    lurkernomore New Member

    After fourteen years of trying to get my mother to understand the limitations and changes that fibro has made in my life, I seemed to be getting somewhere with her. This took place after two events. One was that she developed osteoporosis and she was able to grasp non-stop pain.

    The second awakening for her was that a new neighbor was diagnosed with fibromyalgia and while my mother flatly refused to read any literature I gave her on fibro, she accepted such from her neighbor and read up on fibro. Her neighbor is on disability and suddenly my mother was telling me that I should apply for it too. That I was as deserving as her neighbor was.

    In the past year though, my mother has been watching this neighbor and reporting back to me (with some sort of strange pleasure, I think) that this neighbor gets up everyday at the crack of dawn, does a couple of hours of gardening, then goes inside, cleans up and emerges to get into her car and "run the roads" until just before her husband comes in.

    I frankly am at a loss as to what to think. I know my mom is probably back to thinking that fibro is, in her words," a crock." I want to think that this neighbor is possibly in a remission of sorts. But does anyone think that there are patients who may be given a dx. of fibro because a doctor simply does not know, or want to go the extra mile to do sufficient testing to find out what is really going on?

    This is not the only case I have known of, where someone was told they had fibro, yet they were able to continue their lives with little to absolutely no changes whatsoever. And this went on for years, no slowing down at all. I don't want to sound judgemental and I have no idea what goes on with folks behind closed doors.

    But I do wonder if fibro could be a diagnosis used by some doctors when they simply do not know what else to tell a patient. And if this is the case, it is doing those who do have fibro a huge injustice. I am just weary of the comparisons and judgements. Sorry this post is so long, but this is really becoming a sore spot for me.
  2. minkanyrose

    minkanyrose New Member

    She knows of someone who has FMS and is constentally telling me she walks a mile every morning goes to work and takes care of house and husband.

    Ok that's great mom but there are differences in FMS everyone is different and she is 24 and i am 45 I gradually got worse over time the same could happen to her.

    My mom knows I was fit and trim up until 3 years ago I played soft ball untile I was 32 I worked 56 hours a week took care of 4 kids cooked cleaned and ran boys to foot ball practice and games girls in girl scouts etc etc.... and on and on.

    My body can't do that amy more and I would love to be like I was but IT isn't going to happen unless they find a cure.

    It's hard to beleive people have FMS and are all diffrent in activities they can do.

    I came to the conclusion my mom is never going to understand and don't even talk to her about FMS at all. She can think what she wants but I refuse to explain or debate with her any more. If she gets mad or thinks I am avoiding her that is her problem I tried to educate her but she doesn't want to accept anything I say or show her.

    GOOD LUCK on convincing your mom.
    wishing you a great day
    <br>[<i>This Message was Edited on 05/12/2007</i>]
  3. debhun

    debhun New Member

    I know this lady and she does all the yard work cutting grass and all. Helps down at the church goes out to eat. does what she want to. You see there is differn type of FM I think. There is very mild ,mlid and bad and very bad. Some it think is how you take pain. some do not do well with it and some can. This is JIOM

  4. lurkernomore

    lurkernomore New Member

    Yes, I must agree that age and differing degrees of severity are always a consideration. And thank you for wishing me luck in convincing my mother of my situation. Although at this point, I think it is pretty much a lost cause and lucky for me, what she chooses to believe has little effect on me these days.

    But what I was really trying to get at, and I obviously did a poor job of doing so, is questioning the fact that some people being told they have fibro when they, in fact, do not. I am not saying that they may not have something else going on. Perhaps a viral or bacterial infection which could run it's course or be taken care of with anitbiotics and yes, make them as ill at the onset, but then they would get well again (?)

    We have seen posts, even threads by some who were told they had fibro and later, tested positive for Lyme Disease or Celiac Disease. Now I am by no means saying that neither is as serious as Fibro! No, no, no, that would be horribly arrogant and self serving of me and I would hope that if anything, fibro has at least taught me to be more compassionate and empathetic.Lyme and Celiac Disease are both horrible and I have studied and researched both extensively.

    My point though (and yes, I do have a point, ha ha) is if these other illnesses were initially diagnosed as fibro, is it not possible that other, less serious illnesses could also be the case? And if it IS a less serious illness, one from which the patient could have a full recovery, then where does that leave is, in terms of believability and validation?

    I do hope I have clarified things and not offended anyone because that was never my intention. But have we not all, at some point, heard the comment made that "oh yes, my so-and-so has that...and she works full time and...etc?" And when we hear such comments, am I the only one who wonders if the speaker of said comments really knows what they are talking about? Or am I just getting too old and cynical?
  5. im a bit confused here,so please bare with me.

    when we were diagnosed with the fibro,you know,when the specialist put his/her fingers on those pressure points on our backs,and by crikey,i nearly jumped off the couch with pain.

    well is that what is diagnosed as the fibro?or is that what determins the ME/chronic fatigue syndrome?

    because i wonder how can someone be diagnosed with that tender point thing,and then it not be fibro?you know,the wrong diagnosis.

    im sorry for any spelling mistakes.i have the fog thingy,cant think straight just now.

    kind regards

  6. Poppy2

    Poppy2 New Member

    I believe that there are a lot of people either misdiagnosed or have mild cases. I hear of people that supposedly have it but they seem fine to me. Then there are the people that unquestionably have it. It takes more than just tender points to show fibro, there's all the other symptoms that go with it. I have to say that when I look back over my life, I belive that iv'e had this disease all along, but that it did progressivly get worse, to what it is now. I know what you mean, when people don't belive you, My mother in law is my worst doubter, and it makes things harder, when people around you don't belive you. So, you suffer in silence. But hang in there, were all different, and thanks god we have a post like this with people going through the same kind of things to reassure us that were sane. Good luck Poppy
  7. jole

    jole Member

    When I was diagnosed with FM my SIL said, "Oh, I have that too. You just have to keep pushing yourself". When I asked her about the brain fog, she hadn't heard of it. So I asked her where the FM bothered her the worst. She said the only pain she had was in her left hip!!!

    Two years later she had hip surgery and the pain is now gone. But she still says she has FM because her knees bother her when she mows her yard with a push mower!!! No other sx.

    Yes, I have a problem with this too. She does NOT have FM. Her doc didn't even do a tender point test on her! It just makes me look like I'm putting on. So I understand exactly what you are saying. Most days I can hardly walk, have no balance and started using a cane, but SHE has FM? Go figure.
  8. Engel

    Engel New Member

    isn't that the way these things go??? I do think a lot of DRs misdx and use it as a "catchall". I run into all of these people who claim to have FMS and they are running around, standing, playing sports, traveling, and then ask me what is wrong with me and I say FMS and I can barely hobble with a cane.

    Maybe your Mom needs to offer her services to SSDI as a spy ... lol. Just kidding. At least she is coming around. My poor Mom had osteoporosis also and had those horrid spasms leaving stress fractures in her spine.
  9. Engel

    Engel New Member

    I totally understood your point & I agree. :)
  10. lurkernomore

    lurkernomore New Member

    Thank you to all who have replied and I am relieved that it was somewhat understandable. I really am bugged by this so I hope we can keep this conversation going.
  11. bunnyfluff

    bunnyfluff Member

    Many people ARE misdiagnosed!! So many CAN get better! I am living proof of a system gone awry twice! So very many people do have some sort of underlying parasite, infection, etc., that can be cured. Fibromyalgia IS a wastebasket Dx for lots of dr's who just don't want to keep digging to find out what the heck is really wrong. So, if they can't say, okay, it's RA, or OA, or something, they just say FMS and call it good. But, that's an injustice. There are lots of blood tests and things that they never perform. They just stop looking.

    I think it gives the whole thing a bad name~ you're right. And I think there are lots of complainers who want to THINK they have FMS, just so they can say they have something exotic and *special*. Something *incurable* facinating!!

    My major complaints were different than the typical FMS Dx, and yet I got lumped in there. I was never really satisfied. I am only thankful to finally be on the mend and be putting it behind me and moving on. My best to all of you who are still suffering.

  12. Didoe

    Didoe New Member

    Someone else recently posted about a neighbor who was getting disability and claimed to have FM, and was upset to see her neighbor looking lovely and busy around town doing many things she could not do herself, also an FM patient with the classic fatigue, depression, pain etc. She wondered too, was this a correct diagnosis or a scam by a neighbor.

    Because FM and CFS are somewhat invisible and deduced after ruling out other diseases, there's still too much leeway for both patents and doctors to claim serious illness when perhaps its not quite real. More importantly, you never know what really going on inside anyone else's 4 walls. People get disability for a variety of legitmate reasons and may say its for something else because they do not want to disclose the nature of what they really have.

    My mother was similar...whatever a neighbor said or did might validate her thoughts, but her own daughters never knew too much:)Don't feel bad, its not your shortcoming.

  13. clerty

    clerty New Member

    and was diagnosed with CFS well I have that also but I knew there was somethinbg else going on I k new because yes the trigger point but I was going downhill and started coming on here talking to other people who advised me
    I came to Singapore and I have been in Hosptal twice and they diagnosed my fibro !!!so I ws right all along
    we are the best judges of our owm bodies dont you think ?

  14. Lichu3

    Lichu3 New Member

    Some of my thoughts....

    a. I'm not sure how many people get diagnosed with FM who've actually had the 18 tender points examined in detail. Perhaps docs just diagnose if people say they have pain all-over. This would results in overdiagnosis.

    b. FM is often seen co-morbid with other rheumatologic conditions like RA (you can have both at the same time).

    c. Some researchers have proposed that the definition of FM include symptoms other than just pain - i.e. include brain fog, fatigue, etc.

    d. My opinion is that FM and CFS are probably two different conditions but that some with FM get diagnosed with CFS (those who have a lot of fatigue in addition to pain) and some with CFS get diagnosed with FM (for those who have a lot of pain with CFS).

    It seems like most cases of FM I've heard about are gradual onset or happened after some sort of physical trauma. I wonder if some people with FM and a viral onset in fact have viral profiles similar to those with acute onset CFS.
  15. Didoe

    Didoe New Member

    I couldn't have said it better. But these human losses we suffer I do not think are counted by doctors as such and that's what is most devastating, trying to explain how these 2 illnesses wipe out your entire life.
    Its explaining this, the struggle to survive these losses that doctors look at us and say, you're depressed, take an antidepressant etc. as if we should not be complaining as loudly or bitterly for being deserted or deserting the life and people we lived.
  16. lurkernomore

    lurkernomore New Member

    Your post really touched me and brought me to tears. It is so true. I would love to have my life back and do half of what I use to do. I don't know of anyone who would choose to live like this. What benefits are there? Attention? Because if it is for ain't workin' for me, LOL!

    Thanks to everyone for your replies. They have all made so much sense. I hope we get even more replies!
  17. olivian

    olivian New Member

    hi lurker...I experienced the same things you did. Had fibro (and was diagnosed too) for years and years and could barely move....and saw so many claiming to have fibro....and were basically out dancing every night or something like that! So their "fibro" certainly wasn't like mine.

    yes I believe it is kind of dump diagnosis because the docs just plain don't know what is going on in so many cases. I think many people with the fibro that is really bad may have something else.

    Just recently I found out I had had high blood calcium levels going back off and on for over 10 years. I went to and discovered my 'fibro' symptoms were identical to longstanding hyperparathyroidism caused by a benign parathyroid adenoma!

    After the mirp sugery, a simple outpatient procedure, not the huge old-fashioned surgery, I had the tumor removed and all my fibro symptoms are going away. You can read all about it at

    I even came here to post to let people know in case some of them have this and don't know it. It is way underdiagnosed!

    Check your calcium levels because 97% of the time if they are high this is the problem. I think there may be other things too besides the parathyroid problems that may be labeled fibro, but this is certainly one to check out.

  18. Didoe

    Didoe New Member

    This is a perfect example of how confusing this collection of diseases is.
    You are/were diagnosed with FM and have high blood calcium--I am diagnosed with FM and am severely deficient in Vitamin D and am taking 50,000 mg weekly indefinately. My calcium levels are depleted and I'm 53. From what? from where? I live in the US where there's Vit D in our milk and dairy foods, take a vitamin daily, eat a normal diet, dont drink at all and my bones crunch, crackle and have a life of their own. The pain is horrendous.

    My doctor is rhuematologist actively conducting research studies as well, so for now I have to trust she's about as current on FM/CFS as I'll find.
  19. monalisa3

    monalisa3 New Member

    It's been a while! I too share your feelings. Many people say to me "my muscles hurt too", "it's normal" or " you should exercise more" or "you shouldn't dwell on it" or " you are just stressed". Though my immediate family tries very hard to understand and they actually do believe I am in horrendous pain most days. But I too am sick of people saying I've got that too just don't think about it.

    I also think fibromyalgia gets diagnosed too easily. Why don't doctor's look for the root cause??? Not even one doc has checked my viral status or celiac or so many other things. When I ask them to they look at me like I'm an alien or a hypochondriac. I keep thinking docs fibro seems to be a bit of a wastebasket diagnosis. Doctor's just can't be bothered to work with us and get to the root of our problems. Keep thinking it's something other than fibro than I've got......something curable!

    Hope you're having a pain free day
  20. olivian

    olivian New Member

    I agree with your advice about not discussing fibro, or any other disease people don't understand, with most anyone. They think you are a hypochondriac and should just 'get with it'. Normally healthy people cannot understand what it is like to be so fatigued or in such's hard to do ANYTHING.
    These forums are such a help.