confused by the info

Discussion in 'Fibromyalgia Main Forum' started by snickerdoodle48, Apr 17, 2006.

  1. snickerdoodle48

    snickerdoodle48 New Member

    I am getting so much conflicting info.
    What we have is NOT arthritis I am told, but yet they send us to rheumatologists. One place says there is no inflamation with this, but I am on anti-inflamitory meds for the bursis-and it helps. I felt better when on the Atkins diet -why so? Anyone that can offer info? No Dr. seems to know anything.
  2. leubie

    leubie New Member

    Snickerdoodle, I feel the same way------------GREAT questins-----------Any answers out there--------Ill try and remember to ask my doctor next time------that is Ill try to remember to ask----------LOVE TO ALL---LAURA
  3. elsa

    elsa New Member

    The rheumatologists got the "title" of CFS/FMS specialist because it was a rheumatologist that, while meeting and working with the Centers for Disease Control, came up with the defining tender points in fibro patients.

    Interestingly, the tender points where never intended to be a diagnosing criteria, but a defining criteria for research studies.

    It was also a rheumatologist, Dr. Muhammad Yunus university of Illinois Medical School that announced along with Dr. Robert Bennet that fibromyalgia is a neuroendocrine disease. You can find that article here in the library .... fairly recent, but I don't remember the title.

    Here again, I found it interesting that Dr.Yunus was describing this illness a "multi biophysical syndrome characterized by endocrine dysregulation" all the way back to 1997.

    He was very adament about not using words like dysfunction and stress (although they have a physical place in fibro)because he said the psychiatry community would take the terms and run with them calling FM a psychiatric illness .... which Dr. Yunus said (even back then)is incorrect.

    It really doesn't matter what medical background your doctor has .... the only requirements are that they have an interest in treating CFS/FMS, they are up to date on the research / treatments and they believe it has a neuro/endo and not depressive / psychiatric orgin.

    Hope this helped some. I too was in the same spot you are in once upon a time. I have since found some answers that sit well with me and like to pass along.

  4. elsa

    elsa New Member

  5. snickerdoodle48

    snickerdoodle48 New Member

    Elsa - thanks for the info. I will look in the librar for more info that you talked about. Right now I am just using a family Dr. because I don't know who else to go to. I went to a rheumatologist once, but was not impressed with him at all - he didn't seem really interested in my symptoms. snickerdoodle.
  6. elliespad

    elliespad Member

    Might this be the article you were referring to ?

    Dysregulation Spectrum Syndrome:
    A Unified Field Theory of Fibomyalgia and Related Illnesses
    Reported by Miryam Williamson
    Copyright ©1997, Miryam Ehrlich Williamson - All Rights Reserved

    Updated 7/5/98

    The following is a report on a presentation by MuhammadYunus, MD, rheumatologist and professor of medicine at the University of Illinois College of Medicine, Peoria, at the Ohio '97 fibromyalgia conference, August 8-10, 1997. The conference was sponsored by the Fibromyalgia Alliance of America and Anadem Publishing Co. Any errors contained in this article are the author's, not those of Dr Yunus.

    In a talk titled "Fibromyalgia and Other Members of the Dysregulation Spectrum Syndrome, " Yunus described the link between FM (fibromyalgia), CFS (chronic fatigue syndrome,) IBS (irritable bowel syndrome,) tension headache, migraine, and restless leg syndrome. He groups them under an umbrella he labels "Dysregulation Spectrum Syndrome," defined as "a common biophysical syndrome characterized by endocrine dysregulation and dysfunction." Yunus sees it as related to stress, but points out that not all stress is necessarily psychological. He said he used to use the term "dysfunctional," but has dropped that because the psychiatric community takes that to mean that these illnesses, FM included, are of psychiatric origin, which Yunus thinks is incorrect.

    Yunus identifies these characteristics of the DSS paradigm:

    1. Clustering of DSS members (IBS, migraine, etc.) in a given patient group. These symptoms occur more often in this group than in the general population.
    2. A sharing of clincial characteristics among patients.
    3. A generalized hyperalgesic (heightened sensitivity to pain) state.
    4. Absence of the "classical disease model" (in which injury or illness can be identified by clinical signs, lab tests produce confirmation, and conventional treatment can be expected to work to effect a cure or relief.)
    5. Absence of the typical psychiatric model
    6. A common neuroendocrine mechanism (biophysiology, not pathophysiology)
    7. A common genetic linkage
    8. Response to neuromodulating drugs or interventions

    Statistically, IBS, headache, and dysmenorrhea (menstrual problems) occur in FM more commonly than in the general population; this occurrence is far greater than it would be by mere chance. Restless leg syndrome occurs in 31% of PWF (people with fibromyalgia), 15% of people with rheumatoid arthritis (RA), and 2% of the general population.

    IBS is more common in people with FM and FM is more common in people with IBS. This is not true of inflammatory bowel disease -- Chron's, ulcerative colitis, for example.

    1/3 of patients with RA have FM.

    He presented arguments against FM as a depressive illness:

    * the prevalence of depression in FM is similar to other chronic pain conditions
    * FMS and depression have different biochemical characteristics, as found in serotonin and hypothalamic-pituitary-adrenal axis studies
    * the types of sleep disturbance are different
    * the characteristics of cognitive dysfunction are different
    * FMS responds to much smaller doses of tricyclic agents (he doesn't call them antidepressants)

    As to the fact that tricyclics can help PWF, he points out that there is an antimalarial drug that has been found useful in treating RA, but that doesn't prove that RA is malaria.

    He had a diagram of the synchronicity of FM causes and symptoms that I can't reproduce here but that you can draw: make a rectangle with poor sleep in the upper left corner, fatigue in the upper right, pain in the lower left, and physical deconditioning in the lower right. Draw two-headed arrows between poor sleep and fatigue, poor sleep and pain, pain and fatigue, pain and physical deconditioning, and fatigue and physical deconditioning.

    A "couple of dozen" controlled studies of PWF have reported abnormalities in neurohormal functioning.

    Yunus presented arguments in favor of IBS being a centrally mediated illness rather than a gut disease:

    -- no gut pathology is found -- gut motility studies show inconsistency, but motor abnormalities are present only when the patient is conscious -- the central nervous sytem influences gut motility

    Copyright ©1997, Miryam Ehrlich Williamson - ALL RIGHTS RESERVED

    Fibromyalgia||Audio Tape ||Books||About the Author||Links ||Home
    Write to Miryam Williamson

  7. elsa

    elsa New Member

    Snicker .... I have gotten alot of help from my PCP and have never even seen a rheumatologist so don't sweat that one,lol. I think the best doctor for anyone is someone they are comfortable with and who is knowledgable about our illness.

    Elliespad .... That was one of the articles I ran across quite a while back that I thought was very interesting. He seemed to be quite a maverick to be speaking so in 1997.

    The other point I mentioned you could find in the library in very recent ... Dated 03/10/06 Titled "Recent Fibromyalgia Findings".

    It's a brief article but one that can't help but make you feel good by the validation as well as something definitive to hang your hat on when discussing fibro. It's a short read, but a good one. Check it out when you get the chance.

    I hope both of you are doing well. Tell me what you think if you read the article.

    Take care,