Fibromyalgia - page 16

What are your opinions, nurses? Is Fibromyalgia a justified condition or just a basket term ? I am interested in your feedback. It seems like we see a large number of patients (usually women) with... Read More

  1. by   CHATSDALE
    Quote from TXMOM
    I just saw this today, so I'm REAL late LOL

    Yes, there is something called NF. My daughter and husband have this disorder. It is a genetic disorder. People with NF Type 1 have CAL's, and also have fibromas. Also, they can have scoliosis, and learning disorders. My daughter has had a plexiform neurofibroma removed in July 03 when she was only 11 months.

    It's unfortunate that the Doctors that I have come across know so little about this.
    i and some of my children have nf....my brothers do not .. md says I was probably mutated iin utero....but once a mutation occurs the gene can be passed on...not all of my children are affected but those who were were affedted ione grandchild is MR...one of my sons has multiple nodules...he also has short term memory loss but this may not be connected to NF md in houston says he didn't know...bones are also affedted...my bones and another grandchild have bone problems which have b een caught on xray but have not given us any problems...so far i hope that it stayes that way...i hope that there is research ongoing...i was on a lmailing list havn't had anything in a while i may have been dropped
  2. by   RN77
    [QUOTE=andyman1216]i struggle with the fibromyalgia diagnosis. my mother has been diagnosed with it and she (as well as the majority of the patients i am aquainted with) use it as a crutch. besides the antidepressants, they are usually on massive amounts of narcotics.

    Andy, fibromyalgia (FMS) is a very real diagnosis, with specific diagnostic criteria. I happen to be a sufferer of FMS and can tell you that, at times, the pain is nearly unbearable. I've had times where the weight of a plain bedsheet sent me into agony. Other times, it's quite managable. Contrary to your belief, not all patients with FMS are "on massive amounts of narcotics" (I take NO narcs) In fact, the majority of people with FMS don't even know they have it, because doctors don't always know about it/understand it, or people are told that it's all in their heads. I'm sorry that your mother and others have "tainted" your objectivity. Know that it's real, it hurts like ----, and never goes away. I urge you to look at some of the FMS websites and get the real details. You'll be doing yourself and your patients a great service! :^)
  3. by   veteranRN
    I think Fibromyalgia is sort of like autism. Just because there is a 10,000% increase in diagnosis over 50 years ago doesn't mean it didn't exist back then. It is more readily recognised. What makes it difficult is there are no difinitive lab tests. Dx is made on symptoms alone. I sure don't envy those who have it.
  4. by   PAMELA1957
    Quote from veteranRN
    I think Fibromyalgia is sort of like autism. Just because there is a 10,000% increase in diagnosis over 50 years ago doesn't mean it didn't exist back then. It is more readily recognised. What makes it difficult is there are no difinitive lab tests. Dx is made on symptoms alone. I sure don't envy those who have it.
    -----------------------------------------------------------
    Yep! I agree with you. It has been a hard and long road to hoe. I placed that post quite a while back.

    Since then I fell out of bed (trying to rush to the side of my dog when it cried out), caught both feet in the sheets after throwing the covers back, and ended up falling out of bed, twisting and turning as I fell.

    I have had surgery on my neck and back in the past year (with Titanium placed) and haven't worked for over 18 months. Now, eight months after back surgery (never having gotten to the point of walking distances w/o a walker and back brace), I now have another disc which needs repair.

    One good thing that has happened however ... because I was so terribly in pain ... my Rheumatologist of 7 years placed me on Duragesic pain patches. Before this accident I took Ultram and Skelaxin for the pain. They worked well enough to let me work on an Agency basis (not FT for years now because of the FMS), I now have no outward symptoms of the FMS as far as it's particular pain type, UNLESS I am touched at my tender points, but they are, and have ALWAYS been sore.

    The patches don't give you the "heady" sensations that you get from oral narcotics and that is a great thing. I still am on the other routine meds for FMS ... Elavil for sedation and to increase the body's production of endomorphs, Klonipin and Quinine at bedtime to keep the RLS (restless leg syndrome -- which I think is one of the most horrible things there is) symptoms away. But I am supplementing my pain issues with the use of Lortab and Soma at this time because of back pain. They help some, but nothing ever takes the pain completely away.

    The patches have also allowed me to know that the pain I now have is related to my back and not the FMS. For 2 months after I fell, I tried to treat it as just a bad flare up of FMS. That alone demonstrates how painful FMS can be ... the fact that having 5 herniated discs in your spine doesn't immediately send you to the doctor. HA!
  5. by   PAMELA1957
    Quote from fourevern4alwayz
    I agree with Rena RN 2003 on this subject. I have a family member who was diagnosed with Fibromyalgia and I have always believed that it was due to the way she lives. She doesn't exercise at all, she has horrible sleeping patterns-- if you could SAY patterns, and as far as a good diet, everyone from family members to doctors has told her she needs to cut back on the things she DOES eat and drink, and start eating health, normal meals, as well as stop smoking. But she does nothing to heed these warnings and take our advice. And she wonders why she's always feeling full of aches, pains, and never having energy......Yeesh!
    -------------------------------------------------------------------
    Perhaps you in your wisdom and kindness could offer some help to your family member if possible ... though I realize it is not always easy to help those who aren't willing to be treated. We have ALL had "difficult patients." The trick is having the expertise to win them over to the other side. Though again, you cannot change someone who is not willing to do so.

    But until you walk in the shoes of someone who does have FMS, your opinion doesn't show any intelligence, rather only ignorance of a problem which is quite real.

    However, having this syndrome for 26 years and having none of the same traits that your family member has ... speaks volumes to me.

    God Bless those who offer TLC.
  6. by   CHATSDALE
    Those of you who make fun of dx saying that you feel that was after a rought shift..how would you like to feel that way 24/7...too many nurses/mds feel that if a dx doesn/t show up on lab/xray reports than it has to be mental...diet. sufficient sleep, and proper diet ARE big things in correcting this disorder...medication usually does not work well..it is like those football players who play with injuries..predisone etc let them play...i heard of operation last year that helped but i have not heard of it recently i don't knw if it was a clinical trial that did not hold promise or if it is ongoing..hope someone finds something
  7. by   PAMELA1957
    Quote from CHATSDALE
    Those of you who make fun of dx saying that you feel that was after a rought shift..how would you like to feel that way 24/7...too many nurses/mds feel that if a dx doesn/t show up on lab/xray reports than it has to be mental...diet. sufficient sleep, and proper diet ARE big things in correcting this disorder...medication usually does not work well..it is like those football players who play with injuries..predisone etc let them play...i heard of operation last year that helped but i have not heard of it recently i don't knw if it was a clinical trial that did not hold promise or if it is ongoing..hope someone finds something
    ----------------------------------------------------------------
    Sorry Hon,

    You are not quite up to date on this syndrome disorder. While a healthy life style is always important in every aspect of health care, there are THOUSANDS of healthy people who have this syndrome.

    Medication IS a LARGE part of the treatment.

    The priority is SLEEP. Those with FMS MUST sleep. Without medication to sleep, they never reach the deep level of REM sleep that is needed for the body to secrete the adequate amount of HUMAN GROWTH HORMONE.

    The HGH is what allows the everyday individual to repair all the minute muscle tears that we all get every day just through normal activities ... and we secrete the HGH mainly when we are in DEEP SLEEP.

    Medications to promote sleep are NECESSARY. The usual choice is Amitriptylin, but others are used as well. This promotes sleep and ALSO helps the person with FMS to produce the body's natural "Morphine" ... endomorphin. Thus, helping with BOTH sleep and pain.

    Many people with FMS also have RLS (restless leg syndrome), and Klonipin is the drug of choice for that, though I have personally found Quinine to be very helpful as well. I personally hate RLS possibly more than all the other symptoms of FMS. It is the one that makes me feel the most helpless, because it to me is one of the most horrible to experience.

    I take Vioxx as well, though not necessarily for the FMS, (as anti-inflammatory drugs are not SPECIFICALLY used for FMS) but due to an injury I sustained to my left elbow one time when I slipped on a wet floor and fell.

    I also take a multivitamin and a Calcium supplement.

    The surgery you mentioned MAY be the expansion of the cervical spine? Perhaps, because 85% of FMS sufferers have a very narrow cervical spine, resulting in pressure on the cord and increase at pain receptors.

    At the time of my first cervical surgery, I remember well my neurosurgeon saying I had one of the most narrow cervical spines he had ever seen. At surgery, I was found to have a large amount of Spondylosis as well. It is my personal opinion as a person with FMS, that this narrow cervical might be the most important discovery that has come along.

    The NIH is working on this disorder. A couple of EARLY findings are an increased amount of "Substance P" in the spinal fluid. Comparable to the amounts that are found in the spinal fluids of patient's with terminal cancer.

    The FMS sufferer also has differences from normal individuals in SPEC scans and in EEG studies.

    One thing that has always been very important to me as a nurse, (of 26 years) has been to realize that I am NOT the one who is the most familiar with the suffering of a patient.

    The PATIENT is the one. Because of this belief I don't place much value on the opinions of others, be they nurses or physicians. I listen to my patients.

    Broken down to it's basic level, the study of Nursing and Medicine is to listen to the patient state what is wrong, treat the symptoms that the patient states (through the discovery of information gathered through diagnostic methods) and then ask the patient for clarification of whether the method of treatment has helped them or not.

    I love patient teaching. Unfortunately at times, people tell patients information that is incorrect. To me that is a form of negligence. Before you can teach, you must know the subject matter. Otherwise the best response to give someone is, "I don't know, but I'll look it up for information to pass along to you, or I'll find someone who CAN tell you what you want to know."

    AND to give the patient the MOST IMPORTANT THING that it is the responsibility of the nurse and bedside care givers to give ... TLC.

    Even after 26 years, I count it number one. Because UNLESS you do this, you will miss entirely the chance to form a well based bond with the patient, and discourage them from addressing certain information with YOU.
  8. by   TELEpathicRN
    I too have fibro and am an RN. The only thing I am guilty of is not getting enough exercise! I have never been to the ER seeking pain meds and do not take narcotics for pain as they do not work for the pain of fibro!! I work 40+ hrs per week and none of my peers know that I have this disorder. I am about to return to ER nursing after changing jobs looking for one that would be easier on my body, there really isn't one! I am going to return to what I love. I hope all you fellow nurses can learn that pain is subjective and you shouldn't let your beliefs get in your way of treating every patient equally!!
  9. by   mattsmom81
    What a good post Burke, thank you...so many times I have dealt with patients in chronic pain of various types (and many of their SS mesh with FMS) and tears come to their eyes just to have someone really LISTEN to them...they feel blown off my other healthcare providers who have just given up on them. Good sleep is soooo important, and we often forget this. Another reason as a night nurse that I count myself successful if my critically ill patients get some good rest on my watch; and I try to get them there any way I can from comfort measures to meds.

    Yeah, maybe I'm a pushover but I'll always err on that side whan my patient says they're hurting...and when its chronic try to get a referral to a pain clinic that offers multiple therapy modalities and diagnostics. I've had pain every day for years and I know how debilitating this can be physically, psychologically and spiritually.

    I've had patients just give up and suffer in silence (I've been guilty of this myself) tired of getting rolled eyes or blame from health care workers.(obviously the patient is doing something wrong when meds, PT, etc doesn't help and even makes it worse, eh? )

    I guess its easy to judge when one hasn't been there. Oh...and I also have cervical spine problems and have had one surgery to correct one problem...we'll see what happens down the road. Right now, although my posterior neck pain has abated, my pain area has spread down to my thoracic spine, anterior neck and ribs....so I'm very interested in the theory involving the neck problem and FMS.

    Thanks again for posting Burke!
  10. by   PAMELA1957
    Quote from mattsmom81
    What a good post Burke, thank you...so many times I have dealt with patients in chronic pain of various types (and many of their SS mesh with FMS) and tears come to their eyes just to have someone really LISTEN to them...they feel blown off my other healthcare providers who have just given up on them. Good sleep is soooo important, and we often forget this. Another reason as a night nurse that I count myself successful if my critically ill patients get some good rest on my watch; and I try to get them there any way I can from comfort measures to meds.

    Yeah, maybe I'm a pushover but I'll always err on that side whan my patient says they're hurting...and when its chronic try to get a referral to a pain clinic that offers multiple therapy modalities and diagnostics. I've had pain every day for years and I know how debilitating this can be physically, psychologically and spiritually.

    I've had patients just give up and suffer in silence (I've been guilty of this myself) tired of getting rolled eyes or blame from health care workers.(obviously the patient is doing something wrong when meds, PT, etc doesn't help and even makes it worse, eh? )

    I guess its easy to judge when one hasn't been there. Oh...and I also have cervical spine problems and have had one surgery to correct one problem...we'll see what happens down the road. Right now, although my posterior neck pain has abated, my pain area has spread down to my thoracic spine, anterior neck and ribs....so I'm very interested in the theory involving the neck problem and FMS.

    Thanks again for posting Burke!
    Hang in there ... I also had a lot of pain in my thoracic area at one time, and in my rib cage, especially after sitting.

    I used to get Epidurals at one time for chronic hip pain. For whatever reason ( ? ) they helped my thoracic pain also. Then, as is not uncommon with this syndrome, the hip and thoracic pain just went away and turned up somewhere else.

    I have no idea why ...

    But I'll pray the same happens for you.

    And thank YOU for making sure that your patients get sleep ... most people don't realize how important that is for ICU/CCU patients ... and ALL patients.

    I think the statement made by some patients that they feel worse in the hospital than at home ... is precisely for the reason that they can't get a good nights sleep.


    ALSO FOR FMS SUFFERERS THERE IS A SITE FROM THIS THREAD BY A CHIROPRACTIC PRACTITIONER NAMED WHITCOMB ... SOME OF THE INFO IS INTERESTING ...
  11. by   CHATSDALE
    Quote from TELEpathicRN
    I too have fibro and am an RN. The only thing I am guilty of is not getting enough exercise! I have never been to the ER seeking pain meds and do not take narcotics for pain as they do not work for the pain of fibro!! I work 40+ hrs per week and none of my peers know that I have this disorder. I am about to return to ER nursing after changing jobs looking for one that would be easier on my body, there really isn't one! I am going to return to what I love. I hope all you fellow nurses can learn that pain is subjective and you shouldn't let your beliefs get in your way of treating every patient equally!!
    I have found through trial and error of a few things which make life bearable w/fibro--CFS: B12 c folic acid and a multivitamin, excercise swimming is helpful and it strenghens the body so that you can walk more, otc analgesics
    and as has been mentioned good sleep patterns...use some good common sense about these...too much b12 can cause optical problems and we are all familiar abouft the problems that motrin and asa can cause gi bleeding and ulcers...hopefully someone with smarts will take us seriousely and do some research..i will be so grateful i won't say i told you so to those who look down their nose call sufferers hypchronics and or lazy just because they do not have the problem themselves

    as for jobs which are less/more difficult to hold: for myself I have found that a job which requires a lot desk work, charting etc, is much more difficult esp when you get up and every muscle hurts...intermittent movement and rest are easier for me...which may explain why i can function better as a nurse than i did in steno pool [if that dates me please ignore]
    Last edit by CHATSDALE on Sep 6, '04 : Reason: another thought
  12. by   auntieflo
    I agree w/ matt's mom, depression would be the result of this debilitating disease...
    does anyone know what tests other than SED RATE, to evaluate symptomatology is done?
  13. by   RN TiggerGirll ER
    This sums it up. This is an Emergency Nursing forum. The majority of patients who come to the ER from FM pain are a crock of doo. They are drug seeking. I agree that this dx seems like a catch all and for us ER nurses- the overflow that we see are usually the ones that are drug seeking because they are in the ER and are usually stating "my pain management doctor won't see me anymore" because they caught on to this persons act. If there are real FM patients out there- I am sorry but the not so real ones are giving you and the dx a very bad rap. I only see the abusers on methadone, oxycontin and they come to the ER to get pain meds (like we have anything stronger) You can see a FM patient a mile away and at triage you are just anticipating it coming out of thier mouth. My aunt got Dx with FM and I can testify that she is crazier than a loon and no more had FM than myself. Sorry if I seem cold but this dx bugs me to no end. It's nothing to obtain it other than multiple doctors appt's, multiple vague pain complaints and no pain medicine that will stop it.
    So be it.

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