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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-08-07 10:48 AM
Original message
a Rheumatologist tells why he hates fibro patients... and a reply
i found this at the discussion forums at http://www.fibromyalgia.md and thought it was interesting in terms of understanding why doctors dislike fibro patients, and anyone else who (i guess) who doesn't fit neatly in a box. while this doctor's thoughts make me hopping mad, i feel like this is a valuable insight into the sociology of medicine. not all docs are created equal. i've learned this lesson the hard way, believing until very recently that doctors aren't to be questioned; that what they say is gold.

if you have a hard-to-define illness you are going to run into a version of this guy. it's going to happen. my unfortunate doctor experiences all happened on the front end of my illness and i've lived far too long in pain and without validation. when i recently moved to florida i had to find a new doc and asked my friends, who (lucky for me) all suffer from migraines (they're sisters). i got a referral to a young family practitioner who one sister said was the first doctor to take her situation seriously. she came highly recommended. still, i was a nervous wreck in the office waiting for my first appointment. going over my notes i became so anxious that i began to weep, afraid that this was going to be another in a long line of bad experiences. i wanted to leave before i was called and if she hadn't called me in so quickly i MIGHT have left.

i was still crying in when she came in. i'm an articulate, college-educated woman in her 40s -- and the number of bad experiences i've had with doctors had reduced me to nearly being unable to present my situation to a doctor for fear of being dismissed.

i think that if i knew that doctors were capable of being butt-heads before i had my first few bad experiences, i would have been able to sort thru things better. but, going in expecting to be treated as an equal and NOT being treated as an equal really pulled the rug out from under me.

so, my hope in presenting this is that maybe someone can grok this BEFORE having the bad experieence and not develope the fear/anxiety that i had after so many bad experiences. doctors with shitty attitudes exist. they aren't gods. when you run into one, pick yourself up and find another. all doctors are not created equal.

read this and don't miss the reply below. -- b

http://www.medscape.com/viewarticle/538164

www.jointandbone.org readers, with some agreeing but others disagreeing with how the condition fits into rheumatology. Here, Dr John Luetkemeyer, who runs a rheumatology practice in Pensacola, FL, puts forward his argument for why fibromyalgia patients should be directed elsewhere. He believes that the expertise of the rheumatologist is needed for diagnosis—and to exclude other, more sinister possibilities—but is not needed for treatment, such as it is.

------------

In his article, Dr Pisetsky asks the question whether the thought of treating fibromyalgia patients scared "Karen" away from seeking a rheumatology fellowship at Duke University. I don't think it does anymore than irritable bowel syndrome scares residents from pursuing a career in gastroenterology. Every specialty has its Achilles' heel as it relates to "diagnoses" not supported by evidence-based medicine. In my opinion, it is time for rheumatologists to relinquish the responsibility of treating fibromyalgia patients.

A fibromyalgia patient referred to me is evaluated on a one-time basis to document the validity of the "label," and further follow-up is deferred to the primary-care physician. My desire to enter rheumatology was directly related to my interest in rheumatoid arthritis and the other inflammatory arthritides—not chronic pain secondary to the hypothesized altered processing of pain heavily influenced by psychosocial problems evident in the vast majority of these patients.

I do believe there are patients who have widespread musculoskeletal pain attributed to a syndrome we call fibromyalgia. However, I do not believe rheumatologists should be the "main caregivers for these patients," as Pisetsky and others have suggested. We simply treat these patients by default. The main reason for my stance is the lack of any creditable evidence supporting fibromyalgia as a rheumatologic condition other than the existence of chronic pain. Although rheumatic diseases are often associated with chronic pain, the converse is not necessarily true. With the burgeoning entrepreneurial specialty masquerading as "pain management," my opinion is that these patients would be best served by those who claim to be pain specialists—if only we could get them to put their needles down long enough to actually treat the pain and the patient.

My desire to enter rheumatology was directly related to my interest in rheumatoid arthritis and the other inflammatory arthritides—not chronic pain secondary to the hypothesized altered processing of pain heavily influenced by psychosocial problems evident in the vast majority of these patients.

Until that happens, we, as rheumatologists, will continue to be conveniently viewed as "experts" in treating chronic pain rather than treating the diseases that excited us during our training: rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, reactive arthritis, vasculitis, lupus, scleroderma, myositis, and gout. These are the reasons I went into rheumatology. The manifestations of rheumatic diseases extend across all major specialties and subspecialties. We, as rheumatologists, are often asked to see the "difficult" patient to rule out autoimmune disease, vasculitis, or connective-tissue disease—we are the "specialty internists" of internal medicine.

The problem may lie with physician training and the lack of exposure of medical students and all types of residents to rheumatology. Musculoskeletal diseases span all the major specialties, and future physicians need formal (not elective) exposure to rheumatology, regardless of their chosen final path. We rheumatologists are receiving ever-increasing requests from physicians (both medical and surgical) to rule out fibromyalgia and "conditions" such as connective tissue disease, undifferentiated connective tissue disease, or autoimmune disease, prompted often by unexplained complaints of pain or poor postoperative wound healing. Rheumatologists may be trained in the differential diagnosis of pain but, unfortunately, we are becoming the house officers for poorly trained primary-care physicians, and we are too often being asked to "separate the wheat from the chaff."

Abysmal track record of treatment

Fibromyalgia has an abysmal track record of treatment, and several hypotheses have fallen by the wayside. Low pain thresholds, poor sleep patterns, abnormal levels of homocysteine or substance P, etc, make for interesting discussions at Lunch with the Professor sessions, but there is little practical advice about treatment. Abnormal central processing of pain in fibromyalgia is now the topic du jour. Studies describing the electron microscopic findings (or lack thereof) on the biopsies of tender points in patients with fibromyalgia and the search for peripheral etiologies have now given way to a focus on the central nervous system's processing of pain. Perhaps we are getting closer to finding out that fibromyalgia really is "in the head," one way or another.

Please understand, I mean no disrespect for the contributions of the many rheumatologists who seek to gain a better understanding of fibromyalgia. My intent is not to criticize but only to emphasize the lack of evidence-based medicine supporting the treatment of fibromyalgia. After all, if it were not for these physicians, who else would seek to "invoke the scientific spirit of inquiry in us all"? However, over the years, I have noticed a change in the opinion of eminent rheumatologists regarding posttraumatic fibromyalgia and the concern that labeling patients with fibromyalgia potentially encourages them to "grow into" the label and remain unwell. Several years ago at a conference I attended, Dr Nortin Hadler (University of North Carolina, Chapel Hill) described fibromyalgia as SOOS (Syndrome Of Out of Sorts), and I believe this cannot be totally ignored in many of these patients, and no amount of medication will change their life-associated stresses.

Many recent articles point to the successful treatment of fibromyalgia utilizing nonmedicinal therapies such as behavioral modification, biofeedback, tai chi, Pilates exercises, and aerobic activities, with the latter being the most successful. When medicinal therapy is recommended, it generally falls into the category of antidepressants and/or muscle relaxants. None of these therapeutic approaches requires the expertise of a rheumatologist. But also, there is a documented lack of success. For instance, Dr Frederick Wolfe (University of Kansas, Wichita) and colleagues found a lack of significant improvement in patients after 7 years of conventional treatment <1>. This failure on the part of the physician OR patient cannot be ignored.

Some authors have suggested the primary-care physician may be best suited to provide care to fibromyalgia patients. The bigger problem will be trying to sell this treatment protocol to primary-care physicians (internists and family practitioners), who are becoming ever more dependent on physician assistants, nurse practitioners, and other physician extenders to provide the services for which they often bill under their provider number without seeing, touching, or talking to the patient. Fibromyalgia patients are too often avoided and subsequently referred to rheumatologists, since the time needed to spend educating them about their condition is not cost-effective in an environment of diminishing reimbursements, increasing overhead, and bureaucratic demands. Also, the US medicolegal system rewards patients for the ubiquitous diagnosis of "posttraumatic" fibromyalgia, despite the fact that no creditable evidence exists to support such claims. All of these developments have resulted in increased referrals of fibromyalgia patients to rheumatologists, to the point where the condition may constitute as much as one third of a rheumatologist's practice.

Time to relinquish responsibilities for FM?

Pensacola is a part of the Emerald Coast of Florida, but the whole area suffered devastation from Hurricane Ivan last year. (Source: Pensacola Bay Area Convention and Visitors Bureau)

After 25 years in rheumatology, I do not agree with the comment that fibromyalgia "remains a rheumatologic condition." I find rheumatology to be an exciting and rewarding specialty treating patients with real disease. Never before has it been more satisfying treating a patient with rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis with the recent therapeutic advances. We are now challenged to find the same therapeutic advances and satisfaction in the treatment of patients with lupus, scleroderma, and osteoarthritis.

Occasionally, I have the opportunity to "teach" family-practice residents who desire to spend a month in my office. I stress to them the recent advances in treating diseases they will no doubt see in their primary-care practice. I emphasize the clinical and didactic approach to the patient, while deemphasizing the use of blood tests in search of a diagnosis. I do discuss fibromyalgia, since they will see several of these patients during their rotation with me, and later, no doubt, in their own practice. It is my policy to evaluate these very difficult patients while realizing fibromyalgia is a "diagnosis" of exclusion. If fibromyalgia is the label to be used, it is my belief that "a jog around the block or 20 laps in the pool can make a dent" in the low pain threshold and poor sleep pattern hypothesized in fibromyalgia. I also stress the importance of patients being responsible for their therapy (exercise, stress reduction) and not to rely on my prescription pad. Quite frankly, fibromyalgia patients do not excite me and I elect to "weed" them out of my practice unless they are willing to do the things that might be successful in improving their quality of life. Needless to say, my success rate is no different than Dr Wolfe's experience. After all, aerobic exercise does not come in a capsule or scored tablet!

I find rheumatology to be an exciting and rewarding specialty treating patients with real disease.

As a rheumatologist, I pride myself in the didactic nature of our specialty and the recent advances utilizing monoclonal antibodies and receptor antagonists. I am more excited than ever to treat the musculoskeletal diseases for which I was trained! It is time to relinquish the fibromyalgia patient to our colleagues who are better trained to treat them . . . the clinical psychologist, the pain-management specialist, the primary-care physician or, perhaps, tertiary care centers conducting clinical trials. Fibromyalgia is not an autoimmune disease and I, as a rheumatologist, have no interest in this pain syndrome.

Our patients are our biggest advocates

The recent advances made in the treatment of inflammatory arthritis are enough to excite some residents, and I find those who rotate with me are eager to learn about topics never discussed in their training. When I have residents rotating with me, I deemphasize the impact of fibromyalgia on my practice and emphasize the need to recognize rheumatic diseases and, especially, clinical conditions that may mimic rheumatic diseases. For example, I discuss the patient referred to me for shoulder pain, which turned out to be a Pancoast's tumor suspected simply by physical exam and confirmed that day by chest x-ray. Or the polymyositis patient extensively evaluated by a gastroenterologist for liver disease because of a finding of elevated aspartate transaminase (AST) and alanine aminotransferase (ALT) levels, simply because no physical exam was performed on a patient who initially complained about her inability to lift her right leg.

One of the more intriguing things brought to my attention during my contract negotiations with the local managed-care organizations and third-party payers was the importance of rheumatologists to patient care, which is probably unknown in most academic institutions. I learned there are 3 types of medical specialties with the highest patient loyalty, and managed-care plans and insurance carriers are aware of this little-known fact. Those 3 medical specialties with the highest patient loyalty are gynecology, pediatrics, and rheumatology. Quite simply, our patients are our biggest advocates. I find this to be an exciting reason to be a rheumatologist. We do things fewer and fewer physicians are doing today. We listen to and touch the patient, physically and emotionally.

So, to go back to Dr Pisetsky's article and that potential fellow at Duke, I would say: "Karen, if you are listening, I can find no better reason than this to be a rheumatologist."


Vigorous disagreement

This Rheumanation has prompted quite a few responses from our readers, most of which are posted in the www.jointandbone.org email forum, but we also received this longer piece, published below, which outlines a vigorous disagreement.

Dr Murray Sokoloff (University of New Mexico School of Medicine and in private practice in Santa Fe) writes:

I found many of Dr Luetkemeyer's remarks and opinions quite disturbing and even offensive. He certainly does not speak for me. I could have accepted his views more easily if I felt that he were speaking only about his particular style of practice, which was certainly not the case. We still live in a relatively free country, and he can pick and choose his patients as he wishes. I wholeheartedly agree that Dr Luetkemeyer and the community in which he practices would be far better off if he avoided fibromyalgia patients if at all possible, and he probably would serve his community best if he would hang a sign on his front door saying "FIBROMYALGIA PATIENTS NEED NOT ENTER THESE DOORS." His statement that fibromyalgia is a diagnosis of exclusion sounds as if he has not learned much from these patients. As someone who probably has seen hundreds, if not thousands, of these patients, as I have, he should know that the diagnosis can most often be made by a simple complete history and physical. I have been recognizing these unfortunate people since 1982, and I have learned to make the diagnosis proactively, not retrospectively, in the great majority of patients. Of course I obtain the usual lab tests to confirm my impression.

During my fellowship at UCLA in rheumatology (ending in 1970), I was up to my ears in vasculitis, myositis, lupus, and other exotic conditions. Early in my private practice, however, I saw respiratory infections, GI bleeding, liver disease, heart disease, hypertension, and the occasional rheumatology patient. I was grateful to be busy and to put food on the table. As the rheumatology practice grew—albeit slowly—there was a segment of patients with pain (approximately 20%) whom I could not diagnose despite an extensive workup. Imagine my glee when Dr Hugh Smyth around 1982 published a wonderful paper on fibrositis that helped me enormously to fill in those diagnostic gaps.

Is someone suffering from fibromyalgia any less noble and deserving of our care than someone suffering from rheumatoid arthritis?

These are suffering human beings who need help. Is someone suffering from fibromyalgia any less noble and deserving of our care than someone suffering from rheumatoid arthritis? Of course it is far, far easier to help the rheumatoid than it is the fibromyalgia patient. Maybe we have gotten a
little spoiled with all the wonderful drugs that are available to us. When I began in 1970, we had the following for rheumatoid arthritis: gold salts, hydroxychloroquine (Plaquenil), cyclophosphamide, azathioprine, aspirin, indomethacin, and prednisone. Prednisone had a terrible reputation due to the overuse of corticosteroids in the community. I was happy and of course challenged to have new rheumatoid patients in my practice. Twelve years later, when methotrexate was found to be effective, I was ecstatic. Fibromyalgia early on was no more challenging than many of the other diseases that I treated.

Of course, with the advent of so many wonderful agents for rheumatoid arthritis, treating this disease has become a "piece of cake" in comparison with everything else, especially fibromyalgia.

Who else can manage fibromyalgia better than a dedicated and caring rheumatologist? We are the best diagnosticians, bar none. We are better at using drugs than anybody else, even with our hands tied behind our backs. Managing a fibromyalgia patient is like having one's hands tied behind one's back. Furthermore, drugs don't work very well in these patients, and just telling a patient that they must exercise also does not work. As I write this, I realize that in some respects managing a fibromyalgia patient now is somewhat akin to what is was like managing a rheumatoid 35 years ago when I started practice. Maybe that is why I am not resentful in having to take care of these patients.

It has occurred to me that if I were not able to use opioids in the management of fibromyalgia, then I, too, would lose interest in taking care of these patients. Opioids are to fibromyalgia what corticosteroids are to rheumatoid arthritis. We try to avoid them if possible, but when they are necessary—which is often—we should employ them. Maybe, just maybe, Dr Luetkemeyer refuses to give these patients opioids for whatever reason. If that is the case, I could understand his frustration and his decision not to treat these patients.

On the other hand, I found Dr Pisetsky's remarks in the earlier Rheumanation quite inspiring, and I certainly identified with his discomfort when facing the medical resident, Karen. I, too, have been apologetic at times when too many of my teaching cases happen to have fibromyalgia and not some exotic autoimmune disease. I believe strongly that rheumatologists who do not want to manage or feel uncomfortable managing fibromyalgia should not feel compelled to do so, especially if there is someone else in their community able to do the job well. The interest and enthusiasm of the managing physician may be as important as the strictly clinical aspects, and the latter can be learned with experience. In my geographic practice area I am not aware of any provider with the requisite clinical skills and interest in this illness. I have become the de facto expert in northern New Mexico. About 20% to 25% of my new patients have fibromyalgia as a primary or secondary diagnosis, while 10% to 15% of my follow-ups have the illness. The attrition rate is fairly high, because once patients realize that I do not have any magic in my black bag many opt not to return. It is vital to take the illness seriously and keep trying to make a difference. I have learned to lower my expectations for improvement, and that helps a lot. Most patients come to realize that there is not a magic pill or other treatment available at this time and that there is nothing very exciting on the horizon. Some will adjust their lives accordingly, and some of these adjustments are quite positive. If I can help relieve some suffering and end the relentless quest for a cure, then I have done my job and I am satisfied.

My very direct remarks reflect long-held feelings and prejudices that I am compelled to express. Our collegiality will no doubt survive this onslaught in the long run.


Source

1. Wolfe F, Anderson J, Harkness D, Bennett RM, et al. Health status and disease severity in fibromyalgia: results of a six-center longitudinal study. Arthritis Rheum 1997; 40:1571-1579.
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siligut Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-08-07 12:12 PM
Response to Original message
1. Nice of you.
This is a very thoughtful post. The treatment some people get is mega awful and I wonder if some aren't put off enough to just give up, though that wouldn't be part of the fibro personality I see so often.

I don’t have a subscription to medscape, but the fibro board let me on. One poster hypothesized that mycoplasma infection may be a cause, interesting and I believe there is some validity to this. This is why I want people to take probiotics. Great board btw.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-08-07 03:18 PM
Response to Reply #1
2. i just found that board yesterday and have also read the mycoplamsa thing
very interesting -- especially for me b/c an infection has been a major feature of my disease narrative.

when i first read this Dr's opinion on fibro i got angry. my friend sitting across the table from me commented on the tense expression on my face. i said i was reading something that was pissing me off.

thought about it overnight and decided that's it's a really good thing to know -- in an EVIDENCE-BASED way -- :) that these guys are out there. his perception is that fibroos are kill-joys of his profession. he went into it b/c of an affinity to inflammatory illness. well sheesh. good to know that up front -- like my doc who said she "doesn't 'do' pain." go find another, more interested doc before you get any sicker.

i'm in flare mode right now, btw. saw my doc this morning and tweaked my meds. i told her that the ultram was a godsend and she said that that reinforces her dx of fibro -- the tramadol seems to work best on fibroos and have less impact on other pain patients. sooooo, i'm very glad for the "evidence." need to have an ultrasound done to check the DVT situation, tho.

at any rate, seeing a doc who is "interested" and empathetic makes all the difference in the world. finally i feel like i'm getting traction.
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siligut Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 10:09 AM
Response to Reply #2
5. I am going to spend some time over there.
More and more I am leaning toward the estrogen dominance thing, it all adds up. It sets up a chain reaction when exposed to exogenous, estrogen-like substances.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 11:35 AM
Response to Reply #5
6. i talked to my doc about estrogen yesterday and she really liked how it
added up in my profile. she didn't have any idea what *she* could do regarding the possibility of estrogen dominance, but she thought that it had explanatory power.

i'll be reading more about this!
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siligut Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 12:01 PM
Response to Reply #6
7. Let me know what you find out.
Well, calcium d gucarate, can help decrease estrogen. The best calcium is in vegetables, if you need dairy be sure to get the kind without hormones. Go organic and vegetarian, consider progesterone cream or supplement (a place where your MD can help), be careful if you buy cream that it doesn’t have estrogen also. Exercise, of course, I need to go log some time on the exercycle myself. Turn your head away when you pump gas, don’t heat food in plastic, don’t let water in plastic bottles heat up either. I have been on a cleanse and my thinking seems so much clearer.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 01:16 PM
Response to Reply #7
9. my uncle, the research chemist with Eastman is a fanatic about not heating plastic
he won't even drink coffee from a polymer-based cup -- says that it's a simple fact, polymers leach when heated. period. you can't avoid it.

i'm a soy milk kinda girl. bleh on cow's milk. i do calcium enriched OJ. do you think a calcium supplement supplies the right kind of calcium?
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siligut Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-10-07 11:31 AM
Response to Reply #9
13. Calcium.
Calcium citrate and calcium carbonate are both good supplements and I was taught that they are good for estrogen related troubles. That was 10 yrs ago, since, calcium d glucarate has been isolated and is being sold in supplements. Here is a summary from Alternative med review: Calcium-D-glucarate is the calcium salt of D-glucaric acid, a substance produced naturally in small amounts by mammals, including humans. Glucaric acid is also found in many fruits and vegetables with the highest concentrations to be found in oranges, apples, grapefruit, and cruciferous vegetables. (1) Oral supplementation of calcium-D-glucarate has been shown to inhibit beta-glucuronidase, an enzyme produced by colonic microflora and involved in Phase II liver detoxification. Elevated beta-glucuronidase activity is associated wire an increased risk for various cancers, particularly hormone-dependent cancers such as breast, prostate, and colon cancers. (2) Other potential clinical applications of oral calcium-D-glucarate include regulation of estrogen metabolism and as a lipid-lowering agent.
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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-10-07 09:17 AM
Response to Reply #1
11. my rheumie told me
"most people feel better eventually. after 5 years, most take fewer meds, and see their doctors less." and i thought- feel better? they are giving up.
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Warpy Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 12:55 AM
Response to Original message
3. OK, I need to move to Santa Fe.
Edited on Tue Jan-09-07 12:56 AM by Warpy
My rheumy is one who hates opiates. He's finally come around in my case because I went in unmedicated one day and presented with a BP of 170/110 and heart rate over 160. You can't fake autonomic responses to pain.

However, he remains hostile to the whole idea and seems to forget that I have a whole rheumatologic set of alphabet soup to deal with, also. He's frustrated that numbers can't be assigned to it and he's frustrated that there are few real treatments for it.

Having said that, I do believe rheumatology is where fibro belongs. Pain specialists are OK at what they do, but as more information about what causes fibro comes through the pipeline, they will be inadequate to the job.

Telling people who are exercise intolerant due to pain to do aerobic exercise is both futile and cruel. You have to take care of the pain, first. Then you can suggest those non drug therapies so that the pain medication can eventually be reduced.

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siligut Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 10:04 AM
Response to Reply #3
4. A voice of reason.
Dr. Sokoloff is so Santa Fe; I picture a taller, thinner Andy Garcia. I love how he out-classes Dr Clueless, and meets the challenge rather than sloughing it off like he too important. He radiates compassion and understanding; plus he is articulate and unassuming, we need more MDs like him.

As for Lutefishe, we had a saying when I worked in Fla, “50% of all docs graduated in the lower half of their class and they are all in Fla”. Some docs, it is true, go there for the Medicare dollars and the traditional patients who don’t ask questions. I have to agree; those with fibro would be better off if they just found someone else.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 01:32 PM
Response to Reply #3
10. i had a pain event that put me in the hospital with systolic BP over 230
Edited on Tue Jan-09-07 01:33 PM by nashville_brook
i thought it was a kidney situation, but my doc said it was prolly just the pain that made my heart race.

i've gotten really lucky with ultram working. i've done the opiates in the past and they work too. imo the only downside to the opiates is the social stigma. if you're a chronic pain patient, you're at a reduced risk of "addiction" which is different from "physical dependence." everyone will become phsyically dependent on an opioid -- the same way you become physically dependent on an SSRI or a steroid and get sick if you don't taper off.

only about FIVE PERCENT of the general population is at risk of addiction which is defined as a "neurobehavioral syndrome resulting in psychological dependence on the use of substances for their psychic effects, nontherapeutic or recreational use; compulsive use despite harm and interference with the patient's life."

pain patients are generally seeking a means to be productive and be well which is completely at odds with the pyschological foundation of addiction.

doctors are underprescribing opioids based on FEAR of disciplinary action and negative views of people with chronic pain. it seems to me, after years of dealing with these bastards, that a doctor who focuses on their potential for disciplinary action is prolly doing something else that puts them at risk or has a history of unethical activity that puts them at risk -- and hey, if i'm wrong in my harsh assessment, too bad. the good docs can go ahead and be painted with my broad brush along with the bad ones until they start acting like respectable physicians with their patients' needs at the forefront of their practice. a reluctance to prescribe appropriate pain meds can also indicate a doc with a negative opinion of pain patients -- RUN. been there, done that.
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Warpy Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-10-07 12:02 PM
Response to Reply #10
14. I'm going to ask about it the next time I go in
Edited on Wed Jan-10-07 12:03 PM by Warpy
although I'd hate to be stuck with a month's worth of pain and something I can't take. I have weird reactions to a whole lot of drugs.

The upside is that the local Wally's is now selling it at $4.00/month. I figure I can appeal to his um, economical side and get at least a trial of it.

(oh, and I normally run 80/50 to 110/60. That BP got his attention)
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-11-07 08:38 PM
Response to Reply #14
16. normally i have low BP
i need to get my medical records and confirm this number (again). it astounds me.

the first time they took my BP in triage, they wouldn't tell me the number and didn't tell me i was having a "cardiac event." they rushed me back to the ER -- i thought it just must have been a slow night. after they gave me some pain meds and had me give some blood and urine samples, i was told that i was being held until they figured out if i was having a heart attack. i was like "WHAT!" heart attack was the last thing on my mind. that's when i looked at my BP myself and the systolic was 175... so, it's conceivable it was much higher when i came in.

i just don't understand how i didn't burst a blood vessel with the BP so high.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-09-07 01:08 PM
Response to Original message
8. the BEST BOOK i've found on fibro, CFS etc! GET THIS BOOK!
it's called:

Chronic Fatigue Syndrome, Fribromyalgia and other Invisible Illnesses: The Comprehensive Guide
by Katrina Berne, PH.D

why i love this book:

i'm a political creature and i've experienced such bizarre behavior from doctors that it's NOT ENOUGH to know the etiology of what is ailing me. i want to know WHY i'm being treated like an outcast and I WANT IT TO STOP. in addition to an exhaustive discussion of causes, treatment and symptoms, this book covers the political positioning of the illness -- and nothing has made me feel quite this good in a very long time.

these are POLITICIZED illnesses. this fact is evident in the very NAMING of the diseases. take "chronic fatigue syndrome" which is also part of my dx -- what does this sound like? "fatigue" is something that happens when you exert yourself. "doctor, it hurts when i do this" -- "well, stop doing THAT."but, if you have this disease you are exhausted from doing nothing. the name "chronic fatigue syndrome" encapsulates a victim-blaming idea AND hides the fact that this disease has epidemic features. from page 10 of the book:

"In the early 1980s, a large portion of the population of Incline Village, Nevada, was stricken with an unusual illness. Drs. Daniel Peterson and Paul Cheney treated many of these patients and in 1985 called upon the Centers for Disease Control and Prevention (CDC) to investigate the outbreak. The CDC initially denied the existence of an epidemic, but later claimed they had taken the illness seriously and believed it to be related to Epstein-Barr virus. In 1988, the CDC, taking the position that the illness was not caused by EBV, RENAMED IT "chronic fatigue syndrome," issuing a case definition. The apparently disinterested CDC essentially turned its back on the devastation of Incline Village and elsewhere."

On a name-changing petition, Hillary J. Johnson, author of Osler's Web, commented that the name "chronic fatigue syndrome" was selected

by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their DELIBERATE intention -- based on the correspondence the exchanged over a period of months -- was to OBFUSCATE THE NATURE OF THE DISEASE by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine.


emphasis mine.

chronic fatigue syndrome is half of my current diagnosis. i paid it hardly any attention because i thought it *sounds like* just a further description of the fibro. it's NOT. it's a much more serious condition that has epidemic qualities. it entails COGNITIVE DIS(fucking)ABILITY of the kind that has plagued me since college. the name used for this disease in the UK is myalgic encephalomyletis. now THAT sounds like a respectable disease! "enceph-" means BRAIN. this is a brain dysfunction -- NOT JUST A BUNCH OF LAZY ASSES or chronically fatigued whiners.

one of the problems with this nomenclature is that it is vague and ambiguous -- it excludes MOST of the characteristics of the disease (cognitive dysfunction) and suggests symptoms of other disorders. this is sloppy and according to this author, it was sloppy for a political reason -- that a REAL, CONCRETE recognition of this disorder would overwhelm insurance companies and the Social Security Administration.

so lets wonder further -- what the fuck is going on? if this is indeed an "industrial disease" then there might also be LIABILITY. this is beginning to look like politically motivated tinkering in my life, health and body -- and fuck if that doesn't piss me off.

right now i've got about 3 good hours a day -- how am i ever going to work and support myself on three hours of productivity on my GOOD DAYS. at a congressional briefing in 1995, Mark Loveless M.D., and infectious disease specialist and head of the AIDS and CF'S Clinic at Oregon Health Sciences University, TESTIFIED that "a CFS patient feels every day effectively the same as an AIDS patient feels two months before death."

i can wave this information in front of my lawyer and most of my healthcare providers until i die and they will say, "you're not disabled because this isn't *really* a disease." which is, of course, what the CDC planned for back in the 80s.

think about the implications and let the anger wash over you.


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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-10-07 09:23 AM
Response to Original message
12. although this doc is an ass, i agree that rheumies
treating this never really made that much sense to me. i think most of us have some sort of autoimmune something, even if it doesn't fit neatly into one of their little boxes.
but, mostly, it seems that it is a brain disease. i would think neurologists would be a better option. or psychiatrists. not that anyone wants that stigma. those 2 speacialties ought to be rolled together much more tightly, anyway. they barely talk at all.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Jan-11-07 08:31 PM
Response to Reply #12
15. a case of "Put Me In The Zoo" ?? or are rheumies and immunies kissing cousins?

http://www.amazon.com/gp/reader/0394800176/ref=sib_dp_pt/102-3384234-2316943#reader-link

i've found that rheumatology and immunology are lumped together:
http://rheumatology.duke.edu/home.asp?divisionID=54
http://www.brighamandwomens.org/rheumatology/
http://www.georgetownuniversityhospital.org/body.cfm?id=476

psychiatrists, however, are decidedly NOT a good choice for treatment. some patients may experience anxiety, depression and/or emotional lability as a result of the disease -- but these psychological disturbances aren't causing the disease -- not to mention that suggesting the disease is "all in one's head" is a destructive approach to healing.

here's a link to the current National CFIDs Foundation newsletter. The first article (there's only 4) discusses a prominant reseacher, Dr. Nancy Kilmas, who in 1990 wrote in the Journal of Clinical Microbiology:

"CFS is a form of acquired immunodeficiency."/div]
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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-15-07 04:22 PM
Response to Reply #15
18. i did not say IT'S ALL IN YOUR HEAD.
nor did i mean anything of the sort. there is an unfortunate stigma to brain based disorders, and the doctors who treat them. but the most debilitating aspects of these diseases are neurochemical. i think they ought to be treated by doctors who are experts in neurochemistry.

i think that rheumies are slowly being supplanted by immunologists. mostly a matter of older docs that were originally certified not wanting to go back and get the broader certification. but the overlap gets bigger every day. i think that they should be a part of the team, but i also think that quality of life issues would be better addressed by someone who really has day to day experience and continuing education in neurochemistry, and the associated meds. stigma be damned.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-16-07 12:29 PM
Response to Reply #18
20. gotcha -- didn't mean to imply "you" were issuing that perception
i've had neurologists and psychiatrists on my healthcare team for a while. the neuro for the migraines and the psych for the anxiety. i saw the psych dr every month for 10 minutes. i gave history every month that included seizure-like episodes, all-over pain, debilitating fatigue, and sensory overload. he never once went beyond the concept that my problem was ye olde depression-anxiety tag team. even tho i insisted constantly that i didn't have depression or even The Blues -- that anxiety was ruining my life. once the marriage starting falling apart, THEN i "exhibited" depressive expressions (such as crying) and WHO WOULDN'T? a twenty-year relationship wreaked by an undiagnosed illness... sheesh. i felt like shit AND my husband was blaming me for it AND he was a prick, but that's beside the point. who wouldn't tear up describing that.

i don't mean to offer that as a counter-example. maybe if i had been referred to him with the dx of CFIDs, then he would have "gotten it." but he certainly wasn't in problem-solving mode. 10 minute consult. prescribe SSRI. bill insurance.
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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-16-07 12:54 PM
Response to Reply #20
21. oh, yeah
i meant the theoretical good psychiatrist. not those in the real world, which you describe. i have seen them in action. you are right.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-16-07 01:28 PM
Response to Reply #21
22. he was a big let-down. came highly recommended and was a nice-enough guy
but he really had tunnel vision. then, when i left TN to get away from the prick-husband, he wouldn't prescribe enough of the stupid SSRI to cover me until i could get to another doc. sooooooo, zap-city.
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Ladyhawk Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-15-07 11:37 AM
Response to Original message
17. Unfortunately, I'm under the impression that most doctors
dislike treating chronic illnesses, especially those that are hard to treat. My primary care physician is an in-and-out sort of guy. I have to tell him my diagnosis and what to prescribe. I've tried various other doctors, but have run into all kinds of nightmares. I've almost decided that trying to find a better doctor is a waste of time. When I feel well enough, I do research. It's sad, but I'm going to have to be my own doctor.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-16-07 12:19 PM
Response to Reply #17
19. we are "expensive" patients -- docs like healthy people
because they make more money for the practice -- 10 minute consult. prescribe something. bill insurance.

chronic people need way more than a 10 minute consult and a quickie prescription. we need creative problem solving and, i get the feeling that physicians resent this. like we're asking them to go above and beyond the "call of duty." primary care docs aren't the economically advantaged professionals that they used to be, and i think that a lot of the crappy "care" i've endured is due to a kind of "resentment" of me taking up so much damn time and energy. like, if you have to follow-up on a medicine that's making you sick -- that's a nick to the bottom line. and what they hear is a litany of strange little complaints that SEEM like attention-seeking behavior.

rashes, pain, fatigue, tinnitus, tmj, canker sores, irritable bowel, migraines, acid reflux -- if your doctor isn't connecting the dots, then she'll think you're neurotic and prescribe an SSRI because that is something that her management company will approve of: 10 minute consult, prescribe med, sending to billing dept. done, done and done.
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Ladyhawk Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-17-07 11:28 AM
Response to Reply #19
23. I've been fighting this crap for years.
I have no idea what to do at this point.
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mopinko Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-17-07 11:36 AM
Response to Reply #19
24. i think they hate not knowing the answer
everyone expects the doc to give them the answer- what is wrong with me. i think they would rather have bamboo shoots under their fingernails than say- i don't know.
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nashville_brook Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Jan-17-07 02:41 PM
Response to Reply #24
25. my docs never expressed any regret in not knowing why i got an infection in my spine
"gee, you SHOULD have AIDS. have you been tested?" this, while i was in the hospital.

months later when i was better, i pursued an answer and they got their back up as if i were laying blame. i explained that the combination of the spinal infection, blood clots, hepatitis and pancreatitis worried me and that i thought i was being completely rational in seeking more answers. they said, "good luck with that." one doctor even told me she didn't want to see me anymore.

now i find that the organ problems here are consistent with myalgic encephalomyelitis -- or, "chronic fatigue." maybe i WAS better off without the dx.
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