MSN Acticle on Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by Debra49659, Aug 21, 2010.

  1. Debra49659

    Debra49659 New Member

    I found this on the MSN homepage. It discusses the validity of fibromyalgia and current views. I found it frustrating and rewarding all at the same time:)

  2. lgp

    lgp Well-Known Member

    I saw this article yesterday and was quite distressed by it to say the least. I wanted to comment on it, but that was not an option on the MSN home page, so I wandered over here. Glad I saw your post.

    So what would the naysayers say to the internist, neurologist and perhaps one of the most highly regarded rheumatologists in the country who all emphatically agreed that I had fibromyalgia? The neurologist went far enough to say "You are textbook fibromyalgia." I have no depression issues, a great life, wonderful children, no emotional traumas, etc. I take some vitamins but no medication for this, eat very well, exercise as much as possible, am not overweight, and do everything on a daily basis to stay healthy. So why am I denied this diagnosis and how did I get here?

    Several years ago, after feeling as if I had been hit by a truck and experiencing unusually strange sleep patterns, I sought the help of my internist at the urging of family and friends. She was alarmed when she saw me and ran every test imaginable. In addition, she had me see the cardiologist, endocrinologist, and hematologist/oncologist. After they had cleared me, she suggested that I may have fibromyalgia. And she treated me with dignity and respect as she referred me to a rheumatologist. I was lucky enough to snag an appointment with one of the most respected rheumys in the country, who spent over two hours with me and concurred with my internist's suspicion that I did indeed have fibromyalgia. Several months later, in a neurologist's offfice for an unrelated issue, this doctor proclaimed, "And by the way, you are indeed textbook fibro.."

    The most important part of my keeping myself well is to monitor and work hard on maintaining consistent sleep patterns. The rheumy had spoken to me in depth about my sleep patterns and, at the time, I was reluctant to believe his emphatic coorelation between my lack of sleep and pain. When I finally heeded his advice and went on a sleep aid (Restoril) for several months, I felt like a new person. But I still know something is there, looming in the backround and flares up in odd ways; pain, odd foot pain, insane tiredness like Dorothy in the poppy fields, muscle soreness and achiness, weird skin burning, etc. I try to address the flaring symptoms immediately, stop what I am doing, rest, and hope for the best. But it is a tangible something, and that something, in very odd ways at times, most definitely is fibromyalgia.

    I have to go back to the naysayers and comfort myself (and other fellow sufferers) by telling myself that these folks have never walked in my (our) shoes. God only knows we have enough difficulties with our own families doubting us at times; we certainly do not need dubious attitudes from the medical community. Sometimes I actually tend to think that it may be a medical ego thing--the doctors egos won't allow them to believe that something that they are not capable of finding or fixing actually exists, so they deny it exists. How medically smug.

    I would never wish fibromyalgia on anyone. However, I must admit, I would probably be the first one to smirk if one of the medically naysayers were personally affected. Oh how quickly they would change their tune, and this sad, bewildering and frustrating illness would finally get the respected, unanmimous medical recognition that it rightly deserves.


    [This Message was Edited on 08/22/2010]
  3. Debra49659

    Debra49659 New Member

    Once I finally had a diagnosis from 2 different doctors confirming fibromyalgia. First thing I really wanted to do was called the doctors and co-workers, etc., was call all of them and tell them all how stupid they must be that they were not smart enough to diagnosis me. Following that by telling co-workers to kiss my a**! But I didn't do any over that...I let it all go.

    I realize that this was a childish reaction to get "back" at the folks who didn't believe me. Or doubted the intensity of my symptoms.

    I really, really, really wanted to though:)

  4. lgp

    lgp Well-Known Member

    I just checked back on this board and I am really surprised with so many viewings of this post, more people aren't chiming in since this has been such a hot button issue in the past. Wow--coulda fooled me!

  5. Tizz

    Tizz New Member

    I just re-read the article and I have to say, although it's upsetting, the MSN fibro article is compassionate and supportive toward fibro sufferers. However upsetting it may be that many medical people continue denying the problem's existence -- it's absolutely true.

    As it says in the article, in the words of Dr. John Kincaid, a neurology professor at the Indiana University School of Medicine: "There's an extremely wide range of opinions of physicians, ranging from it doesn't exist at all to it's a true illness. At a guess I'd say it's probably no better than fifty-fifty".

    I think that's a pretty good estimate. And personally, I would ALWAYS rather be told an upsetting truth than have someone tell me whatever they think I want to hear.


  6. Tizz

    Tizz New Member

    I don't know if you wanted an answer to your queston or not -- but I'll try to answer it anyway.

    "Why are some with FM so preoccupied with whether or not their friends, family, co-workers, etc. believe in FM? Is it a lack of self-confidence? Too self-absorbed?"

    I think people in pain do tend to be somewhat self-absorbed -- because, unfortunately, pain tends to make you think about yourself, or at least, about your body.

    As for lack of self-confidence, that's a "chicken or the egg" question. You start having pain all over and feeling tired, maybe having some constipation too, and recurrent bladder problems or whatever. You were raised to believe that doctors are smarter than other people and that they make people feel better, so you go to a doctor with your symptoms. He might prescribe an antibiotic and check your iron levels (and/or do a couple of other labs) but when the results are within normal range, he just tells you to eat prunes and drink cranberry juice.

    You go home thinking, "OK, I'll feel better now because I saw the doctor." When that doesn't happen and the pain continues, after a few weeks you might begin to ask yourself if you're getting something serious, like cancer or whatever. But you trust the doctor so you also worry that you might be becoming a hypochondriac. And the pain continues... until eventually you see a doctor again, with similar results.

    After that has gone on for 3-5 years, a doctor finally diagnoses you with fibro. You tell the next doctor you see that you have fibro, and he pretty much rolls his eyes and sneers sarcastically, "Well it must be the fibro then." He doesn't do ANY tests for whatever you came in complaining about, and he doesn't offer any treatment. If you ask him what he's going to do about your original complaint he tells you to go back and see your rheumatologist about it [or whatever kind of doc is treating your fibro]

    It doesn't take too many repetitions of that scenario for people to become frustrated, despirited, and self-doubting. They feel INVALIDATED by doctors. At home and among their close friends are other people who seem to be laughing at them, especially after they hear "fibromyalgia". Fibro sufferers who cannot rely on their family and close friends as a support group feel "invalidated" once again.

    Broadcasting, I'm very glad you don't have these feelings. You must be very strong and not a particualrly sensitive person, emotionally. But many of us do care whether the important people in our lives "believe" in what we're suffering from.

    [This Message was Edited on 08/23/2010]
  7. Debra49659

    Debra49659 New Member

    Nicely worded. Why does it matter to me, well I guess I don't know, but perhaps it was validation. Or vindication.

  8. Tizz

    Tizz New Member

    LOL, I don't really think of doctors "as being smarter than other people" either (but there are many people who have high expectations from doctors). The truth is, some doctors are brilliant but some aren't.

    You know what you call the guy who graduated last in his medical school, don't you? ..."DOCTOR!!"

    It's always good to have supportive family and friends, and I know that many of us do. But not all of us do. (I'm lucky enough personally to at least have some supportive friends who take me seriously, and a supportive family doctor.)

    If what that MSN story said is true - and I think it IS - then even among doctors only about half "believe" in fibro. (HALF!!) And what that means is that about half of the doctors in the US don't usually take fibro patients seriously or believe what we tell them -- potentially leading to medical negligence.

    I definitely care about THAT.
    [This Message was Edited on 08/24/2010]
  9. limbo

    limbo Member

    laura did the doc write a script for restoril or was it otc? there is a drug with the same name,

    and my sleep is my worst issue. a recent sleep study result was rem was 2 %, and it should be 29%. please reply, i would be so grateful!
  10. AuntTammie

    AuntTammie New Member

    Social support has been shown to play a huge role in longevity, health (physical and mental), and well being. When people are sick this is even more important. When they are so sick that their illness pretty much takes over and determines everything about their lives, and they may become dependent on others just to get by, it becomes vital.

    So, when the important people in our lives do not believe that we are even really sick, we lose their support, and that can be hugely devastating. Even if we don't need their help to get by, why on earth would anyone not care that the people in their lives who matter to them don't believe them? It is hard enough to be so sick to start with, but adding disbelief, disdain, and disrespect to that does hurt.

    Besides, good relationships are about sharing core parts of who you are with others, and valuing each other. Disbelief attempts to completely invalidate who we are and certainly does not allow good sharing/connecting or valuing of us as people. (Perhaps if someone is not all that sick, then it is a different story, becasue there is more about life and who we are than just the illness, but when illness encompasses everything, then it is a big part of who we are, and not believing that is not validating who we are, or what our life is about.)

    Yes, there is more to me than my illnesses, but those illnesses do control everything about my life and are a huge part of who I am now. I cannot separate myself from my illnesses at this point, and not accepting that is not accepting me. Not believing that is not believing me. Not caring about that is not caring about me. Invalidating such a big part of my entire existence and life experience IS invalidating who I am.

    Most people need other people for support, understanding, and sympathy at times, even those who are generally healthy. Those who are barely getting by becasue they are so sick need it even more. That why there are so many support groups, online groups, and counselors. People need people. Surrounding oneself with those who don't get it and don't even try to or even don't believe us just doesn't make sense. Most people don't enjoy getting kicked when they are down!
  11. lgp

    lgp Well-Known Member

    It was a prescription, filled generically under the name Temazepam. There is a huge price difference, so if it makes a difference to you, ask for it to be filled generically as I did. It was $5 as opposed to $75 for me!! It worked very well but you cannot stop taking it abruptly; must take it in decreasing doses until you are off of it. It really did the trick and, although it was a last resort, I would take it again if I ever had to, but it does have some side effects.

    There is an over the counter sleep aid called Simply Sleep that works reasonably well and I have taken it on occasion. My sister has recently had good luck with melatonin.

    I wish you the best of luck, as I have been there and know sleep deprivation is possibly the worst side effect of fibromyalgia. Let us know how you do.


  12. Tizz

    Tizz New Member

    ..."Fibromyalgia for Dummies," by Roland Straud, M.D., and Christine Adamec.

    !) You may not listen to what others say to you (or even hear it at all) because it's hard to listen when you're in extreme pain. Others won't understand, and they may think that you're not listening because you're bored or because you don't care. So it's important to TELL your loved ones what's going on, that you're in so much pain you CAN'T listen at the moment, but you'll be happy to listen once you feel better.

    2) You may be more likely to say "no" to doing fun things with your loved ones when you're having a fibro flare, but you'd probably say "yes" if you felt better. So explain to your loved ones WHY you're saying "no," that you wish you could say "yes," and that you WOULD do those things with them if you were feeling better.

    3) You may tend to agree to anything your family members ask for, if agreeing with them will make them go away and stop pestering you when you're feeling bad! The problem with this one is OBVIOUS... We need to fight the impulse to make things easier for ourselves NOW when that will lead to long-term effects we'll regret later.

    Don't make any decisions when you're having a flare, if possible -- but if you absolutely MUST make a decision while you're immersed in pain, think about the decisions you've made in similar situations in the past.

    I'm definitely guilty of doing #3!!

    [This Message was Edited on 08/24/2010]
  13. Tizz

    Tizz New Member

    Dr. Straud and C. Adamec also talked about harmful expectations that WE, the fibro patients, may have that can cause problems:

    1) Some fibro sufferers believe that noone in all the world can ever conceivably "get" or appreciate what we're going through. This can lead to isolating ourselves from others because we believe there is noone we can talk to.

    2) Some believe that everyone SHOULD understand the problem and that somehow they SHOULD know exactly how difficult it is for us. This leads to disappointment, anger, and resentment because our loved ones cannot meet that expectation.

    Seems to me like it's especially helpful advice that we should try to avoid BOTH of these extremes, and stay somewhere in the middle where beneficial communication with others is possible.


    [This Message was Edited on 08/24/2010]
  14. Tizz

    Tizz New Member Resoril /Temazepam is that, while they allow you to sleep, they also interfere with normal sleep patterns!

  15. Straightarrow

    Straightarrow New Member