My wife might have this. She's been suffering from constant aches and sharp pains in her wrists and hands for years, and it's gotten to the point that sometimes she drops things when a sharp pain randomly hits. Sometimes she can't stand to have any pressure at all on her hands, to the point that she can't even work because it's too painful to type. She's had a dozen tests (some of them painful) and all she has to show for them is a negative diagnosis of carpal tunnel syndrome. It's frustrating as hell to watch her go through that and I know she's been alternately angry and slightly depressed that she's been in pain but hasn't gotten an satisfactory results from her doctors.
FMS does tend to coincide with arthritis, especially for women who seem to be too young to suffer from arthritis.
It also tends to show in people with mild mental disorders like anxiety and depression, which only compounds the "hypochondriac" douchebag problem.
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T-T-Triple combo!
Double Edit:
My second paragraph was meant more as a helpful diagnostic tool for you and your wife. If she suffers from anxiety, depression, or Cognitive Dysfunction, she really ought to see a rheumatologist for possible diagnoses.
Hours late, but thanks for the info. My wife has dealt with anxiety and depression in the past. I've really got to get her to go back to the doctor, but since she spent the last two years going to do tests and having nothing conclusive come of them, she's understandably skeptical about having another go at it.
My wife might have this. She's been suffering from constant aches and sharp pains in her wrists and hands for years, and it's gotten to the point that sometimes she drops things when a sharp pain randomly hits. Sometimes she can't stand to have any pressure at all on her hands, to the point that she can't even work because it's too painful to type. She's had a dozen tests (some of them painful) and all she has to show for them is a negative diagnosis of carpal tunnel syndrome. It's frustrating as hell to watch her go through that and I know she's been alternately angry and slightly depressed that she's been in pain but hasn't gotten an satisfactory results from her doctors.
FMS does tend to coincide with arthritis, especially for women who seem to be too young to suffer from arthritis.
It also tends to show in people with mild mental disorders like anxiety and depression, which only compounds the "hypochondriac" douchebag problem.
Edit:
T-T-Triple combo!
Double Edit:
My second paragraph was meant more as a helpful diagnostic tool for you and your wife. If she suffers from anxiety, depression, or Cognitive Dysfunction, she really ought to see a rheumatologist for possible diagnoses.
Hours late, but thanks for the info. My wife has dealt with anxiety and depression in the past. I've really got to get her to go back to the doctor, but since she spent the last two years going to do tests and having nothing conclusive come of them, she's understandably skeptical about having another go at it.
You have my sympathies. I've spent entirely too many hours in doctor's offices, ERs and surgery waiting rooms, so I know how frustrating it can be. Since there is no diagnostic test for this kind of thing, you really can only go to a rheumatologist or pain clinic and hope they have compassionate doctors. Good luck!
You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.
Chiropractors and homeopaths should be run out of the country on a rail. They end up getting a huge amount of support from people with "mystery diseases" because they are whores and willing to hand out any diagnosis a patient is willing to pay for.
There are problems with the medical industry sure, but making it "less sciencey" is not going to fix any of its problems.
Hold up there, i threw my back out about 4 weeks ago moving, as in tremendous pain in a specific region threw out. The person i was with tried to do the "lift you up and pop your back" and that made it worse. After about 3-4 days of pain that was actually kind of intense I caved and went to a chiropractor, who in turn snapped me around for like 20 minutes, and while i went home sore, the pain was gone the next day.
They are good for some things, especially as all i had to do was go 20 minutes out of my way.
You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.
Chiropractors and homeopaths should be run out of the country on a rail. They end up getting a huge amount of support from people with "mystery diseases" because they are whores and willing to hand out any diagnosis a patient is willing to pay for.
There are problems with the medical industry sure, but making it "less sciencey" is not going to fix any of its problems.
I have Candidaisis (almost over it . . . fingers crossed). and it's incredible the utter amount of bullshit out there. Now, none of this would be a problem if the medical profession actually recognized it as a problem, but they don't, so you get to deal with homeopaths. Not all of their advice is bad, but it's a very mixed bag for sure.
geckahn on
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firewaterwordSatchitanandaPais Vasco to San FranciscoRegistered Userregular
edited October 2009
Chiropractors get some flak from PTs mostly because they fix the immediate problem, but generally don't fix what caused the problem in the first place.
Anyone familiar with the Feldenkrais Method? I initially thought it was a bunch of bullshit, but it turns out that when you scrap away the psycho-spiritual junk, it complements traditional therapy very, very well. Just something to toss out to anyone who's looking for help.
You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.
Chiropractors and homeopaths should be run out of the country on a rail. They end up getting a huge amount of support from people with "mystery diseases" because they are whores and willing to hand out any diagnosis a patient is willing to pay for.
There are problems with the medical industry sure, but making it "less sciencey" is not going to fix any of its problems.
Hold up there, i threw my back out about 4 weeks ago moving, as in tremendous pain in a specific region threw out. The person i was with tried to do the "lift you up and pop your back" and that made it worse. After about 3-4 days of pain that was actually kind of intense I caved and went to a chiropractor, who in turn snapped me around for like 20 minutes, and while i went home sore, the pain was gone the next day.
They are good for some things, especially as all i had to do was go 20 minutes out of my way.
That's merely post hoc ergo prompter hoc reasoning. Chiropractics rejects scientific deduction, and there is little reason to believe that its practices are at all effective.
I also saw a chiropractor for like a year back in high school. My back was totally fucked up from a car accident.
The chiropractic part (spinal manipulation) gives immediate relief, and might help the long term recovery (but . . probably not). It's PT that actually solves the problem, long term. I didn't get better until I started increasing my core muscle strength and doing a half hour of stretches twice a day for like a year.
I have Candidaisis (almost over it . . . fingers crossed). and it's incredible the utter amount of bullshit out there. Now, none of this would be a problem if the medical profession actually recognized it as a problem, but they don't, so you get to deal with homeopaths. Not all of their advice is bad, but it's a very mixed bag for sure.
Mind if I ask what symptoms you're experiencing and how you're treating it?
If you don't mind my asking, that is.
Feral on
every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
the "no true scotch man" fallacy.
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Irond WillWARNING: NO HURTFUL COMMENTS, PLEASE!!!!!Cambridge. MAModeratormod
Chiropractors get some flak from PTs mostly because they fix the immediate problem, but generally don't fix what caused the problem in the first place.
Anyone familiar with the Feldenkrais Method? I initially thought it was a bunch of bullshit, but it turns out that when you scrap away the psycho-spiritual junk, it complements traditional therapy very, very well. Just something to toss out to anyone who's looking for help.
In acse you're unaware, chiropractic is really full of bullshit. It's not centrally about indiscriminate and sometimes irresponsible joint manipulation, though that seems to be what's best known about it. It's actually quite full of mystical and pseudoscientific mumbojumbo.
Here are the 33 principles of chiropractic. These are central to the whole shebang, not just an optional credo that some joint-mainpulators ascribe to.
1. The Major Premise - A Universal Intelligence is in all matter and continually gives to it all its properties and actions, thus maintaining it in existence.
2. The Chiropractic Meaning of Life - The expression of this intelligence through matter is the Chiropractic meaning of life.
3. The Union of Intelligence and Matter - Life is necessarily the union of intelligence and matter.
4. The Triune of Life - Life is a triunity having three necessary united factors, namely: Intelligence, Force and Matter.
5. The Perfection of the Triune - In order to have 100% Life, there must be 100% Intelligence, 100% Force, 100% Matter.
6. The Principle of Time - There is no process that does not require time.
7. The Amount of Intelligence in Matter - The amount of intelligence for any given amount of matter is 100%, and is always proportional to its requirements.
8. The Function of Intelligence - The function of intelligence is to create force.
9. The Amount of Force Created by Intelligence - The amount of force created by intelligence is always 100%.
10. The Function of Force - The function of force is to unite intelligence and matter.
11. The Character of Universal Forces - The forces of Universal Intelligence are manifested by physical laws; are unswerving and unadapted, and have no solicitude for the structures in which they work.
12. Interference with Transmission of Universal Forces - There can be interference with transmission of universal forces.
13. The Function of Matter - The function of matter is to express force.
14. Universal Life - Force is manifested by motion in matter; all matter has motion, therefore there is universal life in all matter.
15. No Motion without the Effort of Force - Matter can have no motion without the application of force by intelligence.
16. Intelligence in both Organic and Inorganic Matter - Universal Intelligence gives force to both organic and inorganic matter.
17. Cause and Effect - Every effect has a cause and every cause has effects.
18. Evidence of Life - The signs of life are evidence of the intelligence of life.
19. Organic Matter - The material of the body of a "living thing" is organized matter.
20. Innate Intelligence - A "living thing" has an inborn intelligence within its body, called Innate Intelligence.
21. The Mission of Innate Intelligence - The mission of Innate Intelligence is to maintain the material of the body of a "living thing" in active organization.
22. The Amount of Innate intelligence - There is 100% of Innate Intelligence in every "living thing," the requisite amount, proportional to its organization.
23. The Function of Innate Intelligence - The function of Innate Intelligence is to adapt universal forces and matter for use in the body, so that all parts of the body will have co-ordinated action for mutual benefit.
24. The Limits of Adaptation - Innate Intelligence adapts forces and matter for the body as long as it can do so without breaking a universal law, or Innate Intelligence is limited by the limitations of matter.
25. The Character of Innate Forces - The forces of Innate Intelligence never injure or destroy the structures in which they work.
26. Comparison of Universal and Innate Forces - In order to carry on the universal cycle of life, Universal forces are destructive, and Innate forces constructive, as regards structural matter.
27. The Normality of Innate Intelligence - Innate Intelligence is always normal and its function is always normal.
28. The Conductors of Innate Forces - The forces of Innate Intelligence operate through or over the nervous system in animal bodies.
29. Interference with Transmission of Innate Forces - There can be interference with the transmission of Innate forces.
30. The Causes of Dis-ease - Interference with the transmission of Innate forces causes incoordination of dis-ease.
31. Subluxations - Interference with transmission in the body is always directly or indirectly due to subluxations in the spinal column.
32. The Principle of Coordination - Coordination is the principle of harmonious action of all the parts of an organism, in fulfilling their offices and purposes.
33. The Law of Demand and Supply - The Law of Demand and Supply is existent in the body in its ideal state; wherein the "clearing house," is the brain, Innate the virtuous "banker," brain cells "clerks," and nerve cells "messengers."
Seriously. Subluxations? "Dis-ease"? Innate intelligence? It's ugly, stupid culty bullshit on the order of the best that Scientology has to offer. Fuck chiropractic. I'm glad that some people here survived through having their back cracked by some quack without suffering long-term neurological or musculoskeletal damage because they're goddamned lucky.
I have Candidaisis (almost over it . . . fingers crossed). and it's incredible the utter amount of bullshit out there. Now, none of this would be a problem if the medical profession actually recognized it as a problem, but they don't, so you get to deal with homeopaths. Not all of their advice is bad, but it's a very mixed bag for sure.
Mind if I ask what symptoms you're experiencing and how you're treating it?
If you don't mind my asking, that is.
The really bad symptoms, that I no longer have but that allowed me to diagnosis it, was really bad brain fog, chronic fatigue, insomnia (along with totally insane dreams). Other symptoms included dry skin and sinus infections. My symptoms were also always worst at the beginning of the week after a weekend of drinking (typically gin and tonics - lots of sugar). I also have celiacs, and it's a fairly common problem for someone recovering from intestinal damage to have, they tend to occur together.
Now my current symptoms are not that bad, mostly just not getting great sleep. But I also haven't drank alcohol in over two months and I dont touch sugar or coffee. And light on the carbs. So that's part of the treatment, diet modification. It's a huge pain in the ass, even for someone used to a limited diet like myself (no gluten).
Besides the diet, from my experience the best way to handle it is to hit it with strong anti fungals initially. This includes caprylic acid, thorne formula sf722 (undecylnic acid), grapefruit seed extract, oil of oregano, as well as an Rx meds - I'm using Lamisil, but Diflucan should work as well. If you have a problem with Candida build up, you'll know it when you first take the strong anti fungals (lamisil, grapefruit seed extract) because you'll probably pass out for a few hours immediately after and not feel too good. When Candida dies off, it releases a whole bunch of toxins, some of which are turned into alcohol after being processed by the liver (this is where the aforementioned brain fog comes from).
Once you eliminate most of the candida, you still need to get rid of the remaining stragglers, because anti fungals dont get totally rid of them. If you start eating sugar, all your symptoms will come back. So what you do is need to start taking probiotics to fix your intestinal flora, which will push the candida completely out of the small intestine - back to the large intestine, where it belongs. The best probiotics for this, by a large margin, appear to be threelac, and Dr. Ohira's Probiotics 12 plus. At this point you also need to take thorne formula sf722 with every meal - it stops the candida from feeding off what you eat, and does not effect non candida gut flora (grapefruit seed extract, oil of oregano, garlic, etc. all kill your benficial flora as well).
And that's where I am now. The plan is to keep taking SF 722 and the probiotics 12 plus, and keep up with the diet (and slowly relax it) until I'm cured.
So yeah, complicated. But that's basically the best answer I've been able to figure out through trial and error of dealing with this for the past like . . 5 months. The SF 722 is probably the biggest part of it - i'm getting better on it, and the people that advise taking it have nothing to gain from their advice (this usually isn't the case with candida treatments).
My vote for the most important scientific revolution of all time would trace back 10,000 years ago to the Middle East, when people first noticed that new plants arise from seeds falling to the ground from other plants—a realization that led to the birth of agriculture. Before that observation, the human race had based its diet on fruits, nuts, tubers and occasional meats. People had to move to where their food happened to be, putting them at the mercy of events and making long-term settlements impossible.
Once humans uncovered the secret of seeds, they quickly learned to domesticate crops, ultimately crossbreeding different grass plants to create such staple grains as wheat, rye and barley, which were nutritious, versatile, storable, and valuable for trade. For the first time, people were able to abandon the nomadic life and build cities. It is no coincidence that the first agricultural areas also became "cradles of civilization."
This advancement, however, came at a dear price: the emergence of an illness now known as celiac disease (CD), which is triggered by ingesting a protein in wheat called gluten or eating similar proteins in rye and barley. Gluten and its relatives had previously been absent from the human diet. But once grains began fueling the growth of stable communities, the proteins undoubtedly began killing people (often children) whose bodies reacted abnormally to them. Eating such proteins repeatedly would have eventually rendered sensitive individuals unable to properly absorb nutrients from food. Victims would also have come to suffer from recurrent abdominal pain and diarrhea and to display the emaciated bodies and swollen bellies of starving people. Impaired nutrition and a spectrum of other complications would have made their lives relatively short and miserable.
If these deaths were noticed at the time, the cause would have been a mystery. Over the past 20 years, however, scientists have pieced together a detailed understanding of CD. They now know that it is an autoimmune disorder, in which the immune system attacks the body’s own tissues. And they know that the disease arises not only from exposure to gluten and its ilk but from a combination of factors, including predisposing genes and abnormalities in the structure of the small intestine.
What is more, CD provides an illuminating example of the way such a triad—an environmental trigger, susceptibility genes and a gut abnormality—may play a role in many autoimmune disorders. Research into CD has thus suggested new types of treatment not only for the disease itself but also for various other autoimmune conditions, such as type 1 diabetes, multiple sclerosis and rheumatoid arthritis.
Early Insights
After the advent of agriculture, thousands of years passed before instances of seemingly well-fed but undernourished children were documented. CD acquired a name in the first century A.D., when Aretaeus of Cappadocia, a Greek physician, reported the first scientific description, calling it koiliakos, after the Greek word for “abdomen,” koelia. British physician Samuel Gee is credited as the modern father of CD. In a 1887 lecture he described it as “a kind of chronic indigestion which is met with in persons of all ages, yet is especially apt to affect children between one and five years old.” He even correctly surmised that “errors in diet may perhaps be a cause.” As clever as Gee obviously was, the true nature of the disease escaped even him, as was clear from his dietary prescription: he suggested feeding these children thinly sliced bread, toasted on both sides.
Identification of gluten as the trigger occurred after World War II, when Dutch pediatrician Willem-Karel Dicke noticed that a war-related shortage of bread in the Netherlands led to a significant drop in the death rate among children affected by CD—from greater than 35 percent to essentially zero. He also reported that once wheat was again available after the conflict, the mortality rate soared to previous levels. Following up on Dicke’s observation, other scientists looked at the different components of wheat, discovering that the major protein in that grain, gluten, was the culprit.
Turning to the biological effects of gluten, investigators learned that repeated exposure in CD patients causes the villi, fingerlike structures in the small intestine, to become chronically inflamed and damaged, so that they are unable to carry out their normal function of breaking food down and shunting nutrients across the intestinal wall to the bloodstream (for delivery throughout the body). Fortunately, if the disease is diagnosed early enough and patients stay on a gluten-free diet, the architecture of the small intestine almost always returns to normal, or close to it, and gastrointestinal symp toms disappear.
In a susceptible person, gluten causes this inflammation and intestinal damage by eliciting activity by various cells of the immune system. These cells in turn harm healthy tissue in an attempt to destroy what they perceive to be an infectious agent.
A Diagnostic Discovery
Fuller details of the many mechanisms through which gluten affects immune activity are still being studied, but one insight in particular has already proved useful in the clinic: a hallmark of the aberrant immune response to gluten is production of antibody molecules targeted to an enzyme called tissue transglutaminase. This enzyme leaks out of damaged cells in inflamed areas of the small intestine and attempts to help heal the surrounding tissue.
Discovery that these antibodies are so common in CD added a new tool for diagnosing the disorder and also allowed my team and other researchers to assess the incidence of the disease in a new way—by screening people for the presence of this antibody in their blood. Before then, doctors had only nonspecific tests, and thus the most reliable way to diagnose the disease was to review the patient’s symptoms, confirm the intestinal inflammation by taking a biopsy of the gut, and assess whether a gluten-free diet relieved symptoms. (Screening for antibodies against gluten is not decisive, because they can also occur in people who do not have CD.)
For years CD was considered a rare disease outside of Europe. In North America, for example, classic symptoms were recognized in fewer than one in 10,000 people. In 2003 we published the results of our study—the largest hunt for people with CD ever conducted in North America, involving more than 13,000 people. Astoundingly, we found that one in 133 apparently healthy subjects was affected, meaning the disease was nearly 100 times more common than had been thought. Work by other researchers has confirmed similar levels in many countries, with no continent spared.
How did 99 percent of cases escape detection for so long? The classical outward signs—persistent indigestion and chronic diarrhea—appear only when large and crucial sections of the intestine are damaged. If a small segment of the intestine is dysfunctional or if inflammation is fairly mild, symptoms may be less dramatic or atypical.
It is also now clear that CD often manifests in a previously unappreciated spectrum of symptoms driven by local disruptions of nutrient absorption from the intestine. Disruption of iron absorption, for example, can cause anemia, and poor folate uptake can lead to a variety of neurological problems. By robbing the body of particular nutrients, CD can thus produce such symptoms as osteoporosis, joint pain, chronic fatigue, short stature, skin lesions,epilepsy, dementia, schizophrenia and seizure.
Because CD often presents in an atypical fashion, many cases still go undiagnosed. This new ability to recognize the disease in all its forms at an early stage allows gluten to be removed from the diet before more serious complications develop.
From Gluten to Immune Dysfunction
Celiac disease provides an enormously valuable model for understanding autoimmune disorders because it is the only example where the addition or removal of a simple environmental component, gluten, can turn the disease process on and off. (Although environmental factors are suspected of playing a role in other autoimmune diseases, none has been positively identified.)
To see how gluten can have a devastating effect in some people, consider how the body responds to it in most of the population. In those without CD, the body does not react. The normal immune system jumps into action only when it detects significant amounts of foreign proteins in the body, reacting aggressively because the foreigners may signal the arrival of disease-causing microorganisms, such as bacteria or viruses.
A major way we encounter foreign proteins and other substances is through eating, and immune soldiers sit under the epithelial cells that line the intestine (enterocytes), ready to pounce and call in reinforcements. One reason our immune system typically is not incited by this thrice-daily protein invasion is that before our defenses encounter anything that might trouble them, our gastrointestinal system usually breaks down most ingested proteins into standard amino acids—the building blocks from which all proteins are constructed.
Gluten, however, has a peculiar structure: it is unusually rich in the amino acids glutamine and proline. This property renders part of the molecule impervious to our protein-chopping machinery, leaving small protein fragments, or peptides, intact. Even so, in healthy people, most of these peptides are kept within the gastrointestinal tract and are simply excreted before the immune system even notices them. And any gluten that sneaks across the gastrointestinal lining is usually too minimal to excite a significant response from a normally functioning immune system.
CD patients, on the other hand, have inherited a mix of genes that contribute to a heightened immune sensitivity to gluten. For example, certain gene variants encoding proteins known as histocompatibility leukocyte antigens (HLAs) play a role. Ninety-five percent of people with CD possess the gene either for HLA-DQ2 or for HLA-DQ8, whereas just 30 to 40 percent of the general population have one of those versions. This finding and others suggest that the HLA-DQ2 and HLA-DQ8 genes are not the sole cause of immune hyperactivity but that the disease, nonetheless, is nearly impossible to establish without one of them. The reason these genes are key becomes obvious from studies of the function of the proteins they specify.
The HLA-DQ2 and HLA-DQ8 proteins are made by antigen-presenting cells. These immune sentinels gobble up foreign organisms and proteins, chop them, fit selected protein fragments into grooves on HLA molecules, and display the resulting complexes on the cell surface for perusal by immune system cells called helper T lymphocytes. T cells that can recognize and bind to the displayed complexes then call in reinforcements.
In patients with CD, tissue transglutaminase released by intestinal epithelial cells attaches to undigested gluten and modifies the peptides in a way that enables them to bind extremely strongly to DQ2 and DQ8 proteins. In consequence, when antigen-presenting cells under intestinal epithelial cells take up the complexes of tissue transglutaminase and gluten, the cells join the gluten to the HLAs and dispatch them to the cell surface, where they activate T cells, inducing the T cells to release cytokines and chemokines (chemicals that stimulate further immune activity). These chemicals and enhancement of immune defenses would be valuable in the face of a microbial attack, but in this instance they do no good and harm the intestinal cells responsible for absorbing nutrients.
CD patients also tend to have other genetic predispositions, such as a propensity for overproducing the immune stimulant IL-15 and for harboring hyperactive immune cells that prime the immune system to attack the gut in response to gluten.
Guilt by Association
What role might antibodies to tissue transglutaminase play in this pathological response to gluten? The answer is still incomplete, but scientists have some idea of what could happen. When intestinal epithelial cells release tissue transglutaminase, B cells of the immune system ingest it—alone or complexed to gluten. They then release antibodies targeted to the enzyme. If the antibodies home in on tissue transglutaminase sitting on or near intestinal epithelial cells, the antibodies might damage the cells directly or elicit other destructive processes. But no one yet knows whether they, in fact, cause such harm.
In the past nine years my colleagues and I have learned that unusual intestinal permeability also appears to participate in CD and other autoimmune diseases. Indeed, a growing body of evidence suggests that virtually the same trio of factors underpins most, and perhaps all, auto immune diseases: an environmental substance that is presented to the body, a genetically based tendency of the immune system to overreact to the substance, and an unusually permeable gut.
Finding the Leak
It is fair to say that the theory that a leaky gut contributes to CD and autoimmunity in general was initially greeted with great skepticism, partly because of the way scientists thought of the intestines. When I was a medical student in the 1970s, the small intestine was described as a pipe composed of a single layer of cells connected like tiles with an impermeable “grout,” known as tight junctions, between them. The tight junctions were thought to keep all but the smallest molecules away from the immune system components in the tissue underlying the tubes. This simple model of the tight junctions as inert, impermeable filler did not inspire legions of researchers to study their structure, and I was among the unenthused.
It was only an unexpected twist of fate, and one of the most disappointing moments of my career, that drew me to study tight junctions. In the late 1980s I was working on a vaccine for cholera. At that time, the cholera toxin was believed to be the sole cause of the devastating diarrhea characteristic of that infection. To test this hypothesis, my team deleted the gene encoding the cholera toxin from the bacterium Vibrio cholerae. Conventional wisdom suggested that bacteria disarmed in this way would make an ideal vaccine, because the remaining proteins on a living bacterial cell would elicit a strong immune response that would protect against diarrhea.
But when we administered our attenuated bacteria to volunteers, the vaccine provoked enough diarrhea to bar its use. I felt completely disheartened. Years of hard work were literally down the toilet, and we were faced with two unattractive options: giving up and moving on to another research project or persevering and trying to understand what went wrong. Some in tuition that there was more to this story prompted us to choose the latter path, and this decision led us to discover a new toxin that caused diarrhea by a previously undescribed mechanism. It changed the permeability of the small intestine by disassembling those supposedly inert tight junctions, an effect that allowed fluid to seep from tissues into the gut. This “grout” was interesting after all.
Indeed, at nearly the same time, a series of seminal discoveries clarified that a sophisticated meshwork of proteins forms the tight junctions; however, little information was available on how these structures were controlled. Therefore, the discovery of our toxin, which we called the “zonula occludens toxin,” or Zot (zonula occludens is Latin for “tight junction”), provided a valuable tool for clarifying the control process. It revealed that a single molecule, Zot, could loosen the complex structure of the tight junctions. We also realized that the control system that made this loosening possible was too complicated to have evolved simply to cause biological harm to the host. V. cholerae must cause diarreha by exploiting a preexisting host pathway that regulates intestinal permeability.
Five years after the formulation of this hypothesis, we discovered zonulin, the protein that in humans and other higher animals increases intestinal permeability by the same mechanism as the bacterial Zot. How the body uses zonulin to its advantage remains to be established. Most likely, though, this molecule, which is secreted by intestinal epithelial tissue as well as by cells in other organs (tight junctions have important roles in tissues throughout the body), performs several jobs—including regulating the movement of fluid, large molecules and immune cells between body compartments.
Discovery of zonulin prompted us to search the medical literature for human disorders characterized by increased intestinal permeability. It was then that we first learned, much to my surprise, that many autoimmune diseases—among them, CD, type 1 diabetes, multiple sclerosis, rheumatoid arthritis and inflammatory bowel diseases—all have as a common denominator aberrant intestinal permeability. In many of these diseases, the increased permeability is caused by abnormally high levels of zonulin. And in CD, it is now clear that gluten itself prompts exaggerated zonulin secretion (perhaps because of the patient’s genetic makeup).
This discovery led us to propose that it is the enhanced intestinal permeability in CD patients that allows gluten, the environmental factor, to seep out of the gut and to interact freely with genetically sensitized elements of the immune system. That understanding, in turn, suggests that removing any one factor of the autoimmunity-causing trinity—the environmental trigger, the heightened immune reactivity or the intestinal per meability—should be enough to stop the disease process.
Therapies to Topple the Trinity
As I mentioned before, and as this theory would predict, removing gluten from the diet ends up healing the intestinal damage. Regrettably, a lifelong adherence to a strict gluten-free diet is not easy. Gluten is a common and, in many countries, unlabeled ingredient in the human diet. Further complicating adherence, gluten-free products are not widely available and are more expensive than their gluten-containing counterparts. In addition, sticking perfectly over years to any diet for medical purposes is notoriously challenging. For such reasons, diet therapy is an incomplete solution.
Consequently, several alternative therapeutic strategies have been considered that disrupt at least one element of the three-step process. Alvine Pharmaceuticals in San Carlos, Calif., has developed oral protein-enzyme therapies that completely break down gluten peptides normally resistant to digestion and has an agent in clinical trials. Other investigators are considering ways to inhibit tissue transglutaminase so that it does not chemically modify undigested gluten fragments into the form where they bind so effectively to HLA-DQ2 and HLA-DQ8 proteins.
No one has yet come up with safe and ethical ways to manipulate the genes that make people susceptible to disease. But researchers are busy developing therapies that might dampen some of the genetically controlled factors that contribute to the immune system’s oversensitivity. For example, the Australian company Nexpep is working on a vaccine that would expose the immune system to small amounts of strongly immunogenic forms of gluten, on the theory that repeated small exposures would ultimately induce the immune system to tolerate gluten.
With an eye toward blocking the intestinal barrier defect, I co-founded Alba Therapeutics to explore the value of a zonulin inhibitor named Larazotide. (I am now a scientific adviser for Alba and hold stock options, but I no longer participate in making decisions for the company.) Larazotide has now been tested in two human trials examining safety, tolerability and signs of efficacy in celiac patients who ate gluten. These were gold-standard trials—randomized, placebo-controlled tests in which neither the drug deliverers nor the patients know who receives treatment and who receives a sham, until the trial is over.
Together the tests showed no excess of side effects in patients given Larazotide rather than the placebo. More important, the first, smaller study demonstrated that the agent reduced gluten-induced intestinal barrier dysfunction, production of inflammatory molecules and gastrointestinal symptoms in celiac patients. And the second, large study, reported at a conference in April, showed that CD patients who received a placebo produced antibodies against tissue transglutaminase but that the treated group did not. As far as I know, this result marks the first time a drug has halted an autoimmune process, interfering specifically with an immune response against a particular molecule made by the body. Other drugs that suppress immune activity act less specifically. Recently Alba received approval from the U.S. Food and Drug Administration to expand studies of Larazotide to other autoimmune disorders, including type 1 diabetes and Crohn’s disease.
These new prospects for therapy do not mean that CD patients can abandon dietary restrictions anytime soon. Diet could also be used in a new way. Under the leadership of Carlo Catassi, my team at the University of Maryland has begun a long-term clinical study to test whether having infants at high risk eat nothing containing gluten until after their first year can delay the onset of CD or, better yet, prevent it entirely. “High risk,” in this case, means infants possess susceptibility genes and their immediate family has a history of the disorder.
We suspect the approach could work because the immune system matures dramatically in the first 12 months of life and because research on susceptible infants has implied that avoiding gluten during the first year of life might essentially train that developing immune system to tolerate gluten thereafter, as healthy people do, rather than being overstimulated by it. So far we have enrolled more than 700 potentially genetically susceptible infants in this study, and preliminary findings suggest that delaying gluten exposure reduces by fourfold the likelihood that CD will develop. It will be decades, however, until we know for certain whether this strategy can stop the disease from ever occurring.
Given the apparently shared underpinning of autoimmune disorders in general, researchers who investigate those conditions are eager to learn whether some therapeutic strategies for CD might also ease other autoimmune conditions that currently lack good treatments. And with several different approaches in the pipeline to treat CD, we can begin to hope that this disease, which has followed humanity from the dawn of civilization, is facing its last century on earth.
A Clue to Delayed Onset
People with celiac disease are born with a genetic susceptibility to it. So why do some individuals show no evidence of the disorder until late in life? In the past, I would have said that the disease process was probably occurring in early life, just too mildly to cause symptoms. But now it seems that a different answer, having to do with the bacteria that live in the digestive tract, may be more apt.
These microbes, collectively known as the microbiome, may differ from person to person and from one population to another, even varying in the same individual as life progresses. Apparently they can also influence which genes in their hosts are active at any given time. Hence, a person whose immune system has managed to tolerate gluten for many years might suddenly lose tolerance if the microbiome changes in a way that causes formerly quiet susceptibility genes to become active. If this idea is correct, celiac disease might one day be prevented or treated by ingestion of selected helpful microbes, or “probiotics.”
I've no doubt fibromyalgia is real, but over the last few years, the diagnosis has been more and more prevalent- leading to a lot of mis-diagnosis for people who aren't suffering from the problem. Keep in mind this is all anecdotal from me.
I tend to agree (again, purely anecodotally). I think of it as being similar to ADHD in that way; for some people, it's a very real and debilitating condition. My aunt committed suicide about two years ago because of chronic pain. For others, I suspect it's a symptom of some psychological disorder, a psychosomatic symptom of depression perhaps. For others, it's an excuse.
But IANAdoctor, and I would not want to disagree with a doctor's evaluation of any individual case.
Fibromyalgia is a garbage bin diagnosis*, the diagnostic criteria are as specious as "indigestion" and it's most likely a psychosomatic disorder. That it is most commonly and successfully treated with SSRIs is damning evidence against a broad systemic attack on connective tissue.
It's real. And fuck anybody that says it isn't. I saw my ex-wife suffer with it and it isn't made up or "hysteria" or anything like that.
The only difference between psychosomatic pain and "real" pain is the treatment methods. Nobody who isn't a shitpoop will say that people suffering psychosomatic symptoms aren't suffering, its that there is little evidence to suggest the sort of systemic issues usually claimed by FMS advocates vs. a neurological condition.
The MUS I know I have is delayed sleep phase syndrome. It's very hard for me to get up early and very hard for me to go to bed early. My sleep schedule creeps later and later every day unless I force it to reset.
I've missed appointments, been late to work, etc.
A strong piece of evidence in favor of it being a medical condition is that my mom had the same problem. She deals with it by working nights, but before getting on the night shift she had experienced a lot of friction with prior employers when she'd inevitably show up to work late. Her mom was also a notoriously late sleeper.
Even though I pretty much knew that I was wired to be a "night person," getting the actual diagnosis felt really, really good.
I know this is off topic, but holy shit, that sounds like exactly what I have! I often have extreme problems going to sleep before 5AM. I've been trying to correct it for months with little success. Hell, there's at least one day a week where I'm up for 24 to 36 hours trying to correct my sleep schedule. I just thought it was insomnia!
Man, I need to go to a sleep center and get that shit diagnosed.
That it is most commonly and successfully treated with SSRIs is damning evidence against a broad systemic attack on connective tissue.
Not so much. SSRIs have proven effectiveness against neuropathy that is separate from their effectiveness for depression.
So if one of the possible etiologies for fibromyalgia is that the pain is induced by general nervous system damage - as you would see in, for instance, an autoimmune disorder - then it would stand to reason that SSRIs could have a positive effect even if the patient does not have endogenous depression. This is not a particularly exotic model for fibromyalgia.
I don't like the connotations of the term "garbage-bin diagnosis" even though it is factually correct. I just don't want to use terms that imply that all chronic sufferers are describing somatoform or factitious symptoms even if some are.
Feral on
every person who doesn't like an acquired taste always seems to think everyone who likes it is faking it. it should be an official fallacy.
That it is most commonly and successfully treated with SSRIs is damning evidence against a broad systemic attack on connective tissue.
Not so much. SSRIs have proven effectiveness against neuropathy that is separate from their effectiveness for depression.
So if one of the possible etiologies for fibromyalgia is that the pain is induced by general nervous system damage - as you would see in, for instance, an autoimmune disorder - then it would stand to reason that SSRIs could have a positive effect even if the patient does not have endogenous depression. This is not a particularly exotic model for fibromyalgia.
I don't like the connotations of the term "garbage-bin diagnosis" even though it is factually correct. I just don't want to use terms that imply that all chronic sufferers are describing somatoform or factitious symptoms even if some are.
I believe this is also why gabapentin is sometimes prescribed for fibromyalgia, as it deals with neuropathic pain. As long as it helps people, I am all for the kitchen sink approach of throwing medicine at someone to see what sticks, as long as possible psychological causes are addressed as well.
That it is most commonly and successfully treated with SSRIs is damning evidence against a broad systemic attack on connective tissue.
Not so much. SSRIs have proven effectiveness against neuropathy that is separate from their effectiveness for depression.
So if one of the possible etiologies for fibromyalgia is that the pain is induced by general nervous system damage - as you would see in, for instance, an autoimmune disorder - then it would stand to reason that SSRIs could have a positive effect even if the patient does not have endogenous depression. This is not a particularly exotic model for fibromyalgia.
I don't like the connotations of the term "garbage-bin diagnosis" even though it is factually correct. I just don't want to use terms that imply that all chronic sufferers are describing somatoform or factitious symptoms even if some are.
I believe this is also why gabapentin is sometimes prescribed for fibromyalgia, as it deals with neuropathic pain. As long as it helps people, I am all for the kitchen sink approach of throwing medicine at someone to see what sticks, as long as possible psychological causes are addressed as well.
That's what my wife takes, but it doesn't do a lot for her. We've heard that pregabalin (i.e. Lyrica) is more effective, but there isn't a generic form available as far as I know. Since our insurance company doesn't want to pay for it, and her doctor doesn't want to argue with them about it, she effectively has no way of even trying it.
Not to merge this into the healthcare reform thread or anything, but :x
The MUS I know I have is delayed sleep phase syndrome. It's very hard for me to get up early and very hard for me to go to bed early. My sleep schedule creeps later and later every day unless I force it to reset.
I've missed appointments, been late to work, etc.
A strong piece of evidence in favor of it being a medical condition is that my mom had the same problem. She deals with it by working nights, but before getting on the night shift she had experienced a lot of friction with prior employers when she'd inevitably show up to work late. Her mom was also a notoriously late sleeper.
Even though I pretty much knew that I was wired to be a "night person," getting the actual diagnosis felt really, really good.
I know this is off topic, but holy shit, that sounds like exactly what I have! I often have extreme problems going to sleep before 5AM. I've been trying to correct it for months with little success. Hell, there's at least one day a week where I'm up for 24 to 36 hours trying to correct my sleep schedule. I just thought it was insomnia!
Man, I need to go to a sleep center and get that shit diagnosed.
I've had this my entire life. It was actually kind of a boon during the dark season in Greenland when I was stationed there, but has been awful pretty much in every other aspect of my life.
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Irond WillWARNING: NO HURTFUL COMMENTS, PLEASE!!!!!Cambridge. MAModeratormod
I have a spinal condition. It is here to stay. I have crazy weird nerve pain because my spine is telling me my legs are hurting badly when it's really a spot on my lower back that's swollen. I wake up about six or seven times a night, every night, no exceptions, to deal with some part of my body aching, because either my back is hurting or I've unconsciously opted to make a healthy part of me (say, my arm) deal with being uncomfortable so my back can get a little break.
Now, I've met my fair share of quack chiropractors, but I've also met people who can help people with spinal conditions. The Pixel Blue Test for Chiropractor virtue goes like this:
A chiro should agree with these two statements:
1) there is no reason why healthy-spined people need to a see a chiropractor (besides injury)
2) chiropractics will never ever 'cure' scoliosis
It seems like a lot don't agree, and they are jerkwads. But my spine makes an S shape, guys. I am fucking out of alignment on my very, very best day. You know what helps the most? Stretches and muscle-building in my problem areas. You know what spine specialist helped me build a routine for my specific, snowflake-unique S-shaped spine? My chiropractor. Who was recommended to me by the surgeons who dealt with my spine as I was growing, 100% grade-A doctors.
I totally understand the hate for the people fleecing other people in the world, but even if it's only 1% of chiropractors who are good, those 1% are super, super important to people like me. Don't hate, put a little disclaimer or something.
The problem is with chiropractic itself. It is voodoo, is nonscientific, and you are quite likely to actually walk away from a chiropractor worse in the long run than if you'd never gone in the first place. Of the eighteen disciplines (or whatever it is) of chiropractic, the only one that seems to have any basis in efficacy is the application of spine-straightening and back-cracking, which can give temporary relief to people with back problems but is incredibly dangerous.
Overall, you'd be better off with a physical therapist. Some few chiropractors end up effectively being PT practitioners, but I'd really recommend you find someone certified in PT. If nothing else, at least they're generally insured as a hedge against malpractice and damage.
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AtomikaLive fast and get fucked or whateverRegistered Userregular
edited October 2009
I'll tell that from a standpoint of emergency medicine, doctors and nurses in that specialty do not like to treat complaints of fibromyalgia, and for one reason: fraud. As there's no test to determine the disease, and many (and probably most) people who seek emergent treatment claim to be allergic to all but the most potent of narcotic painkillers, ER staff generally see the people who are just seeking drugs and lying about the condition.
It's a shame, because it's a real problem for people who have it, but it is the number one diagnosis of choice for people looking to defraud the disability system and score narcotics.
ETA: And I treated a woman with mild lycanthropy just last night.
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KetarCome on upstairswe're having a partyRegistered Userregular
You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.
Chiropractors and homeopaths should be run out of the country on a rail. They end up getting a huge amount of support from people with "mystery diseases" because they are whores and willing to hand out any diagnosis a patient is willing to pay for.
There are problems with the medical industry sure, but making it "less sciencey" is not going to fix any of its problems.
Hold up there, i threw my back out about 4 weeks ago moving, as in tremendous pain in a specific region threw out. The person i was with tried to do the "lift you up and pop your back" and that made it worse. After about 3-4 days of pain that was actually kind of intense I caved and went to a chiropractor, who in turn snapped me around for like 20 minutes, and while i went home sore, the pain was gone the next day.
They are good for some things, especially as all i had to do was go 20 minutes out of my way.
That's merely post hoc ergo prompter hoc reasoning. Chiropractics rejects scientific deduction, and there is little reason to believe that its practices are at all effective.
Whoa now, anti-chiropractor people.
I have a spinal condition. It is here to stay. I have crazy weird nerve pain because my spine is telling me my legs are hurting badly when it's really a spot on my lower back that's swollen. I wake up about six or seven times a night, every night, no exceptions, to deal with some part of my body aching, because either my back is hurting or I've unconsciously opted to make a healthy part of me (say, my arm) deal with being uncomfortable so my back can get a little break.
Now, I've met my fair share of quack chiropractors, but I've also met people who can help people with spinal conditions. The Pixel Blue Test for Chiropractor virtue goes like this:
A chiro should agree with these two statements:
1) there is no reason why healthy-spined people need to a see a chiropractor (besides injury)
2) chiropractics will never ever 'cure' scoliosis
It seems like a lot don't agree, and they are jerkwads. But my spine makes an S shape, guys. I am fucking out of alignment on my very, very best day. You know what helps the most? Stretches and muscle-building in my problem areas. You know what spine specialist helped me build a routine for my specific, snowflake-unique S-shaped spine? My chiropractor. Who was recommended to me by the surgeons who dealt with my spine as I was growing, 100% grade-A doctors.
I totally understand the hate for the people fleecing other people in the world, but even if it's only 1% of chiropractors who are good, those 1% are super, super important to people like me. Don't hate, put a little disclaimer or something.
Your condition sounds somewhat similar to my current state - I just had a follow-up this morning with my physiatrist after the second epidural injection for my two very herniated discs, and the associated pinched nerve pain that has my spine way out of whack from sitting and sleeping (and even standing) in awkward positions to lessen the pain as much as possible.
You know who does for me what your chiropractor does for you? My physical therapist. And I don't have to worry about any of the crazy chiro bullshit from her. Are there good chiropractors? Sure, but you have to find one who ignores most of the basic tenets of chiropractic, and truly good ones are rare indeed. I'd rather deal with someone who has acquired the same skill set in a much more rational educational setting, personally.
On a different note, since there was some discussion of nerve pain medication, I was given prescriptions today for Norco and Lyrica since that second injection actually inflamed things and increased my pain and Tramadol was no longer sufficient for anything more than slightly dulling the pain. The first Norco this afternoon has been better but still doesn't provide a great deal of relief (5/325 strength). I'm told the Lyrica that I start tonight can take up to 4 weeks to really take effect, but I'll try to offer up opinions on its effectiveness for my nerve pain over time.
The problem is with chiropractic itself. It is voodoo, is nonscientific, and you are quite likely to actually walk away from a chiropractor worse in the long run than if you'd never gone in the first place. Of the eighteen disciplines (or whatever it is) of chiropractic, the only one that seems to have any basis in efficacy is the application of spine-straightening and back-cracking, which can give temporary relief to people with back problems but is incredibly dangerous.
Overall, you'd be better off with a physical therapist. Some few chiropractors end up effectively being PT practitioners, but I'd really recommend you find someone certified in PT. If nothing else, at least they're generally insured as a hedge against malpractice and damage.
I can't even tell you how fantastic that temporary relief is, though. It's an unfortunate reminder that my idea of normal != normal, but god, to stand up from a chair or lay down without the typical fucked-up-back symphony of discomfort is so nice, and it usually lasted almost two days, for me. And these stretches and exercises I do really do seem to have improved my range of motion. My arms were in bad shape for awhile, but they're so much better now than they used to be. That part's essentially PT - but I got it from a back dude, not a general-PT dude.
Got a source, for me? I'm not sure what 'level' of chiro my dude is, but I will endeavor to find out and see what kind of doctor he really is. Heck, I think he's a chiropractor, but would a surgeon recommend a chiropractor if they're really that shady? I typically trust my hospital doctors, they're typically pretty on-the-ball. I'd like to learn more, though, I don't want to get my spine fucked up any further than it already is.
You really don't have to read more than about twenty words on say, the Wiki page for chiropractic to find out how scary-crazy the whole thing is. It really is a bunch of mystical voodoo witch-doctory. If you've stumbled into a conscientious person who hasn't yet crippled you you are lucky.
Most people don't realize how terrible chiropractic is. It's generally regarded by people as an offshoot to medicine, or interchangable with PT. It absolutely is not. I have no idea why your physician referred you to a chiropractor, as doctors generally resent chiropractic and regard it as the dangerous fraud that it is. Your doctor, I guess, must have either not gotten the memo or else just has an unusual view of such things.
I've had this my entire life. It was actually kind of a boon during the dark season in Greenland when I was stationed there, but has been awful pretty much in every other aspect of my life.
I've had it the last few years, at the very least. It worked out the last couple of years because I had a 8PM-6AM job during the work week, and I used to just party late at night with friends on the weekend. Now that I have a day job and school, though, it really is a pain in the ass.
Whatever the ultimate cause is, there are probably a lot of other things lumped in with it, since it's one of those things where if you meet seven of ten criteria you are put in that catagory.
That it is most commonly and successfully treated with SSRIs is damning evidence against a broad systemic attack on connective tissue.
Not so much. SSRIs have proven effectiveness against neuropathy that is separate from their effectiveness for depression.
So if one of the possible etiologies for fibromyalgia is that the pain is induced by general nervous system damage - as you would see in, for instance, an autoimmune disorder - then it would stand to reason that SSRIs could have a positive effect even if the patient does not have endogenous depression. This is not a particularly exotic model for fibromyalgia.
I don't like the connotations of the term "garbage-bin diagnosis" even though it is factually correct. I just don't want to use terms that imply that all chronic sufferers are describing somatoform or factitious symptoms even if some are.
I believe this is also why gabapentin is sometimes prescribed for fibromyalgia, as it deals with neuropathic pain. As long as it helps people, I am all for the kitchen sink approach of throwing medicine at someone to see what sticks, as long as possible psychological causes are addressed as well.
That's what my wife takes, but it doesn't do a lot for her. We've heard that pregabalin (i.e. Lyrica) is more effective, but there isn't a generic form available as far as I know. Since our insurance company doesn't want to pay for it, and her doctor doesn't want to argue with them about it, she effectively has no way of even trying it.
Not to merge this into the healthcare reform thread or anything, but :x
If it's any help to you, Cesca was on Gabapentin for a while, but it required an ever-increasing dose to maintain its effectiveness and eventually hit a wall at 1800mg.
It's Lyrica she takes at the moment, along with painkillers as and when required.
I thought I'd chip in with that because she's not reading the thread anymore, she's had enough people in her life insist that there's nothing wrong with her and can do without the upset.
It's been about four years since CFS was thrown onto the table, and all signs point to some form of it another three or four years before that. At this point I've been on every recommended treatment with some things more effective than others.
I don't deny that it's fucked with my head enough to perpetuate it, but this isn't in my head. I will fight anyone who tells me otherwise.
It's been about four years since CFS was thrown onto the table, and all signs point to some form of it another three or four years before that. At this point I've been on every recommended treatment with some things more effective than others.
I don't deny that it's fucked with my head enough to perpetuate it, but this isn't in my head. I will fight anyone who tells me otherwise.
You have chronic fatigue syndrome? what are your symptoms like?
It's been about four years since CFS was thrown onto the table, and all signs point to some form of it another three or four years before that. At this point I've been on every recommended treatment with some things more effective than others.
I don't deny that it's fucked with my head enough to perpetuate it, but this isn't in my head. I will fight anyone who tells me otherwise.
This is why you can't get better: the biggest problem with dealing with a mental problem is your admitting you have a mental problem. Think of it like an eating disorder. Sure, you could fight the diagnosis and evidence, but why? Doctors will be waiting for you when you finally want treatment, and won't think any more or less of you for stalling or going right away.
My sister fakes fibromyalgia for the express purpose of getting painkillers
She exhibits none of the symptoms until she runs out of pills
I have no doubt that it exists, but I'm witnessing firsthand the rather revolting sight of someone who has discovered the magic word that makes doctors hand out opiate-derived drugs like candy just so she can fuel her addiction
It's been about four years since CFS was thrown onto the table, and all signs point to some form of it another three or four years before that. At this point I've been on every recommended treatment with some things more effective than others.
I don't deny that it's fucked with my head enough to perpetuate it, but this isn't in my head. I will fight anyone who tells me otherwise.
This is why you can't get better: the biggest problem with dealing with a mental problem is your admitting you have a mental problem. Think of it like an eating disorder. Sure, you could fight the diagnosis and evidence, but why? Doctors will be waiting for you when you finally want treatment, and won't think any more or less of you for stalling or going right away.
The help is there, go get it.
Point being it isn't just in my head. There are physical symptoms that I cannot overcome. It feeds itself back around.
I realize that my slew of doctors have done what they can and it's on me now to suck it up. What's ended up happening though is that I've grown complacent, I guess, for lack of a better word. I made the mistake of defining myself by it, and it's just who I am now.
as for symptoms:
massive brain fog: i was largely unable to read - couldn't retain between the pages - this has since improved with Savella - concentration is still spotty
sleep is pretty much useless. in the event i do sleep for more than an hour or two at a time, it doesn't do much good.
my energy level fluctuates between normal level of function and not being able to get out of bed - various meds have had certain levels of effect
joint and muscle pain
headaches ranging from the dull days-long to migraines
the best way i can really describe it is that i just feel like i've heard my grandparents and older relatives complain about how they feel. doesn't encapsulate all of it, but it puts it into perspective.
My mother was diagnosed with fibromyalgia several years ago. That diagnosis was bullshit. It was blatantly obvious to me that what was really going on was that she was addicted to the painkillers that she started on when she had her hysterectomy. The signs were all there, and I actually said it to my father who agreed but didn't do anything. Your talking about a woman who is known to suffer from depression and has been diagnosed with OCD, and never really held a job and has no life outside of the house at all. She would pop pills like candy, and a few hours later when she started to feel anything at all, she would start to put on a huge show, whining and literally saying "My fibromylgia! My fibromylgia! It's hurting so much, give me my pills." She clearly didn't even know what it was. She basically just wanted the pills to stop feeling anything and used the fibromylgia to get them. And when I finally confronted her with it, rather than trying to discuss it in any kind of a reasonable manner, she immediately became way over-defensive, practically yelling, "How dare you! You have no idea what it's like! That kind of attitude is disgusting! Now go get me my quadruple dose of Vicodin."
I don't doubt that fibromylgia exists, but I think that it's going to become like ADHD, where it gets vastly over-diagnosed. After all, selling pills and treatments earns more money than saying, "Hey, that's actually normal. You just need to bear with it for a little while and it'll pass."
Fakers are annoying in general but I imagine the number of people who fake something like this for years and don't have an obvious drug addiction is very low.
I get annoyed by people who claim to get "migraine headaches" but aren't ever debilitated by the headache and never take prescription meds for it.
My little brother used to get chronic ear infections and sinus headaches. If you get sinus headaches or whatever just say so, you'll get a lot more sympathy from me than if you claim to get migraine headaches, which will just piss me off.
The whole outbreak of self diagnosis has really marginalized the credibility of people who are actually suffering.
There are people who have migraine headaches which follow the classic symptoms but aren't severe or frequent enough to require prescription medications. I've had visual auras followed by only mild or complely absent headaches then nausea which were diagnosed as migraine related but not severe enough to require medical treatment.
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AtomikaLive fast and get fucked or whateverRegistered Userregular
Fakers are annoying in general but I imagine the number of people who fake something like this for years and don't have an obvious drug addiction is very low.
I get annoyed by people who claim to get "migraine headaches" but aren't ever debilitated by the headache and never take prescription meds for it.
My little brother used to get chronic ear infections and sinus headaches. If you get sinus headaches or whatever just say so, you'll get a lot more sympathy from me than if you claim to get migraine headaches, which will just piss me off.
The whole outbreak of self diagnosis has really marginalized the credibility of people who are actually suffering.
There are people who have migraine headaches which follow the classic symptoms but aren't severe or frequent enough to require prescription medications. I've had visual auras followed by only mild or complely absent headaches then nausea which were diagnosed as migraine related but not severe enough to require medical treatment.
In the ER we can usually tell which people are for real and which are faking. The people just looking for drugs are easy to spot, and usually don't get their way. When you come into the triage and say something like, "Oh, I get really bad migraines, but I'm allergic to morphine, toradol, NSAIDS, and nubain. All I can have is dilaudid and phenergan," you've basically set off every bullshit-detecting Spidey sense we have. And then we send you home, but not until we've done our due diligence with testing and cost the taxpayers thousands of dollars.
My wife is diagnosed with fibro. For the longest time she had these huge knots in her back which hurt her so bad she could barely lift anything. She was on a multitude of different medications which seemed to keep it under control. Doctor finally prescribed her Lyrica, and she was able to stop using all of her other meds.
So no vicadin, methadone or oxycodone. Fibro is very real, but I do think some people abuse it and use it to get as many narcotics as they can as they can get their hands on.
You know, it wasn't until a few years ago that I knew how crazy they were. I always thought of them as being physical therapy guys. When I found out there's this whole culture of "straighten your spine to cure your sinus infection", I got really weirded out.
Chiropractors and homeopaths should be run out of the country on a rail. They end up getting a huge amount of support from people with "mystery diseases" because they are whores and willing to hand out any diagnosis a patient is willing to pay for.
There are problems with the medical industry sure, but making it "less sciencey" is not going to fix any of its problems.
You should try looking up Craniosacral therapy sometimes. It's chiropractic therapy version 2.0.
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Hours late, but thanks for the info. My wife has dealt with anxiety and depression in the past. I've really got to get her to go back to the doctor, but since she spent the last two years going to do tests and having nothing conclusive come of them, she's understandably skeptical about having another go at it.
You have my sympathies. I've spent entirely too many hours in doctor's offices, ERs and surgery waiting rooms, so I know how frustrating it can be. Since there is no diagnostic test for this kind of thing, you really can only go to a rheumatologist or pain clinic and hope they have compassionate doctors. Good luck!
Hold up there, i threw my back out about 4 weeks ago moving, as in tremendous pain in a specific region threw out. The person i was with tried to do the "lift you up and pop your back" and that made it worse. After about 3-4 days of pain that was actually kind of intense I caved and went to a chiropractor, who in turn snapped me around for like 20 minutes, and while i went home sore, the pain was gone the next day.
They are good for some things, especially as all i had to do was go 20 minutes out of my way.
I have Candidaisis (almost over it . . . fingers crossed). and it's incredible the utter amount of bullshit out there. Now, none of this would be a problem if the medical profession actually recognized it as a problem, but they don't, so you get to deal with homeopaths. Not all of their advice is bad, but it's a very mixed bag for sure.
Anyone familiar with the Feldenkrais Method? I initially thought it was a bunch of bullshit, but it turns out that when you scrap away the psycho-spiritual junk, it complements traditional therapy very, very well. Just something to toss out to anyone who's looking for help.
That's merely post hoc ergo prompter hoc reasoning. Chiropractics rejects scientific deduction, and there is little reason to believe that its practices are at all effective.
The chiropractic part (spinal manipulation) gives immediate relief, and might help the long term recovery (but . . probably not). It's PT that actually solves the problem, long term. I didn't get better until I started increasing my core muscle strength and doing a half hour of stretches twice a day for like a year.
Mind if I ask what symptoms you're experiencing and how you're treating it?
If you don't mind my asking, that is.
the "no true scotch man" fallacy.
In acse you're unaware, chiropractic is really full of bullshit. It's not centrally about indiscriminate and sometimes irresponsible joint manipulation, though that seems to be what's best known about it. It's actually quite full of mystical and pseudoscientific mumbojumbo.
Here are the 33 principles of chiropractic. These are central to the whole shebang, not just an optional credo that some joint-mainpulators ascribe to.
2. The Chiropractic Meaning of Life - The expression of this intelligence through matter is the Chiropractic meaning of life.
3. The Union of Intelligence and Matter - Life is necessarily the union of intelligence and matter.
4. The Triune of Life - Life is a triunity having three necessary united factors, namely: Intelligence, Force and Matter.
5. The Perfection of the Triune - In order to have 100% Life, there must be 100% Intelligence, 100% Force, 100% Matter.
6. The Principle of Time - There is no process that does not require time.
7. The Amount of Intelligence in Matter - The amount of intelligence for any given amount of matter is 100%, and is always proportional to its requirements.
8. The Function of Intelligence - The function of intelligence is to create force.
9. The Amount of Force Created by Intelligence - The amount of force created by intelligence is always 100%.
10. The Function of Force - The function of force is to unite intelligence and matter.
11. The Character of Universal Forces - The forces of Universal Intelligence are manifested by physical laws; are unswerving and unadapted, and have no solicitude for the structures in which they work.
12. Interference with Transmission of Universal Forces - There can be interference with transmission of universal forces.
13. The Function of Matter - The function of matter is to express force.
14. Universal Life - Force is manifested by motion in matter; all matter has motion, therefore there is universal life in all matter.
15. No Motion without the Effort of Force - Matter can have no motion without the application of force by intelligence.
16. Intelligence in both Organic and Inorganic Matter - Universal Intelligence gives force to both organic and inorganic matter.
17. Cause and Effect - Every effect has a cause and every cause has effects.
18. Evidence of Life - The signs of life are evidence of the intelligence of life.
19. Organic Matter - The material of the body of a "living thing" is organized matter.
20. Innate Intelligence - A "living thing" has an inborn intelligence within its body, called Innate Intelligence.
21. The Mission of Innate Intelligence - The mission of Innate Intelligence is to maintain the material of the body of a "living thing" in active organization.
22. The Amount of Innate intelligence - There is 100% of Innate Intelligence in every "living thing," the requisite amount, proportional to its organization.
23. The Function of Innate Intelligence - The function of Innate Intelligence is to adapt universal forces and matter for use in the body, so that all parts of the body will have co-ordinated action for mutual benefit.
24. The Limits of Adaptation - Innate Intelligence adapts forces and matter for the body as long as it can do so without breaking a universal law, or Innate Intelligence is limited by the limitations of matter.
25. The Character of Innate Forces - The forces of Innate Intelligence never injure or destroy the structures in which they work.
26. Comparison of Universal and Innate Forces - In order to carry on the universal cycle of life, Universal forces are destructive, and Innate forces constructive, as regards structural matter.
27. The Normality of Innate Intelligence - Innate Intelligence is always normal and its function is always normal.
28. The Conductors of Innate Forces - The forces of Innate Intelligence operate through or over the nervous system in animal bodies.
29. Interference with Transmission of Innate Forces - There can be interference with the transmission of Innate forces.
30. The Causes of Dis-ease - Interference with the transmission of Innate forces causes incoordination of dis-ease.
31. Subluxations - Interference with transmission in the body is always directly or indirectly due to subluxations in the spinal column.
32. The Principle of Coordination - Coordination is the principle of harmonious action of all the parts of an organism, in fulfilling their offices and purposes.
33. The Law of Demand and Supply - The Law of Demand and Supply is existent in the body in its ideal state; wherein the "clearing house," is the brain, Innate the virtuous "banker," brain cells "clerks," and nerve cells "messengers."
Seriously. Subluxations? "Dis-ease"? Innate intelligence? It's ugly, stupid culty bullshit on the order of the best that Scientology has to offer. Fuck chiropractic. I'm glad that some people here survived through having their back cracked by some quack without suffering long-term neurological or musculoskeletal damage because they're goddamned lucky.
The really bad symptoms, that I no longer have but that allowed me to diagnosis it, was really bad brain fog, chronic fatigue, insomnia (along with totally insane dreams). Other symptoms included dry skin and sinus infections. My symptoms were also always worst at the beginning of the week after a weekend of drinking (typically gin and tonics - lots of sugar). I also have celiacs, and it's a fairly common problem for someone recovering from intestinal damage to have, they tend to occur together.
Now my current symptoms are not that bad, mostly just not getting great sleep. But I also haven't drank alcohol in over two months and I dont touch sugar or coffee. And light on the carbs. So that's part of the treatment, diet modification. It's a huge pain in the ass, even for someone used to a limited diet like myself (no gluten).
Besides the diet, from my experience the best way to handle it is to hit it with strong anti fungals initially. This includes caprylic acid, thorne formula sf722 (undecylnic acid), grapefruit seed extract, oil of oregano, as well as an Rx meds - I'm using Lamisil, but Diflucan should work as well. If you have a problem with Candida build up, you'll know it when you first take the strong anti fungals (lamisil, grapefruit seed extract) because you'll probably pass out for a few hours immediately after and not feel too good. When Candida dies off, it releases a whole bunch of toxins, some of which are turned into alcohol after being processed by the liver (this is where the aforementioned brain fog comes from).
Once you eliminate most of the candida, you still need to get rid of the remaining stragglers, because anti fungals dont get totally rid of them. If you start eating sugar, all your symptoms will come back. So what you do is need to start taking probiotics to fix your intestinal flora, which will push the candida completely out of the small intestine - back to the large intestine, where it belongs. The best probiotics for this, by a large margin, appear to be threelac, and Dr. Ohira's Probiotics 12 plus. At this point you also need to take thorne formula sf722 with every meal - it stops the candida from feeding off what you eat, and does not effect non candida gut flora (grapefruit seed extract, oil of oregano, garlic, etc. all kill your benficial flora as well).
And that's where I am now. The plan is to keep taking SF 722 and the probiotics 12 plus, and keep up with the diet (and slowly relax it) until I'm cured.
So yeah, complicated. But that's basically the best answer I've been able to figure out through trial and error of dealing with this for the past like . . 5 months. The SF 722 is probably the biggest part of it - i'm getting better on it, and the people that advise taking it have nothing to gain from their advice (this usually isn't the case with candida treatments).
So this is an article on celiacs disease, from the august 09 issue of Scientific American, but it relates to most auto immune diseases:
Link (sometimes they require you to subscribe to view it, sometimes not. it makes no sense to me): http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights
And the text of the article:
I tend to agree (again, purely anecodotally). I think of it as being similar to ADHD in that way; for some people, it's a very real and debilitating condition. My aunt committed suicide about two years ago because of chronic pain. For others, I suspect it's a symptom of some psychological disorder, a psychosomatic symptom of depression perhaps. For others, it's an excuse.
But IANAdoctor, and I would not want to disagree with a doctor's evaluation of any individual case.
IOS Game Center ID: Isotope-X
http://jama.ama-assn.org/cgi/content/abstract/301/2/198
http://www.jrheum.org/content/36/2/398.abstract
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WNP-4THJGM1-4&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1051414451&_rerunOrigin=scholar.google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=828263a56ef7c84923576c4da07e5fab
*This is not a negative term, it's a classification of assorted symptoms that don't meet the diagnostic criteria for any known disease.
The only difference between psychosomatic pain and "real" pain is the treatment methods. Nobody who isn't a shitpoop will say that people suffering psychosomatic symptoms aren't suffering, its that there is little evidence to suggest the sort of systemic issues usually claimed by FMS advocates vs. a neurological condition.
I know this is off topic, but holy shit, that sounds like exactly what I have! I often have extreme problems going to sleep before 5AM. I've been trying to correct it for months with little success. Hell, there's at least one day a week where I'm up for 24 to 36 hours trying to correct my sleep schedule. I just thought it was insomnia!
Man, I need to go to a sleep center and get that shit diagnosed.
Not so much. SSRIs have proven effectiveness against neuropathy that is separate from their effectiveness for depression.
So if one of the possible etiologies for fibromyalgia is that the pain is induced by general nervous system damage - as you would see in, for instance, an autoimmune disorder - then it would stand to reason that SSRIs could have a positive effect even if the patient does not have endogenous depression. This is not a particularly exotic model for fibromyalgia.
I don't like the connotations of the term "garbage-bin diagnosis" even though it is factually correct. I just don't want to use terms that imply that all chronic sufferers are describing somatoform or factitious symptoms even if some are.
the "no true scotch man" fallacy.
I believe this is also why gabapentin is sometimes prescribed for fibromyalgia, as it deals with neuropathic pain. As long as it helps people, I am all for the kitchen sink approach of throwing medicine at someone to see what sticks, as long as possible psychological causes are addressed as well.
That's what my wife takes, but it doesn't do a lot for her. We've heard that pregabalin (i.e. Lyrica) is more effective, but there isn't a generic form available as far as I know. Since our insurance company doesn't want to pay for it, and her doctor doesn't want to argue with them about it, she effectively has no way of even trying it.
Not to merge this into the healthcare reform thread or anything, but :x
I've had this my entire life. It was actually kind of a boon during the dark season in Greenland when I was stationed there, but has been awful pretty much in every other aspect of my life.
The problem is with chiropractic itself. It is voodoo, is nonscientific, and you are quite likely to actually walk away from a chiropractor worse in the long run than if you'd never gone in the first place. Of the eighteen disciplines (or whatever it is) of chiropractic, the only one that seems to have any basis in efficacy is the application of spine-straightening and back-cracking, which can give temporary relief to people with back problems but is incredibly dangerous.
Overall, you'd be better off with a physical therapist. Some few chiropractors end up effectively being PT practitioners, but I'd really recommend you find someone certified in PT. If nothing else, at least they're generally insured as a hedge against malpractice and damage.
It's a shame, because it's a real problem for people who have it, but it is the number one diagnosis of choice for people looking to defraud the disability system and score narcotics.
ETA: And I treated a woman with mild lycanthropy just last night.
Your condition sounds somewhat similar to my current state - I just had a follow-up this morning with my physiatrist after the second epidural injection for my two very herniated discs, and the associated pinched nerve pain that has my spine way out of whack from sitting and sleeping (and even standing) in awkward positions to lessen the pain as much as possible.
You know who does for me what your chiropractor does for you? My physical therapist. And I don't have to worry about any of the crazy chiro bullshit from her. Are there good chiropractors? Sure, but you have to find one who ignores most of the basic tenets of chiropractic, and truly good ones are rare indeed. I'd rather deal with someone who has acquired the same skill set in a much more rational educational setting, personally.
On a different note, since there was some discussion of nerve pain medication, I was given prescriptions today for Norco and Lyrica since that second injection actually inflamed things and increased my pain and Tramadol was no longer sufficient for anything more than slightly dulling the pain. The first Norco this afternoon has been better but still doesn't provide a great deal of relief (5/325 strength). I'm told the Lyrica that I start tonight can take up to 4 weeks to really take effect, but I'll try to offer up opinions on its effectiveness for my nerve pain over time.
You really don't have to read more than about twenty words on say, the Wiki page for chiropractic to find out how scary-crazy the whole thing is. It really is a bunch of mystical voodoo witch-doctory. If you've stumbled into a conscientious person who hasn't yet crippled you you are lucky.
Most people don't realize how terrible chiropractic is. It's generally regarded by people as an offshoot to medicine, or interchangable with PT. It absolutely is not. I have no idea why your physician referred you to a chiropractor, as doctors generally resent chiropractic and regard it as the dangerous fraud that it is. Your doctor, I guess, must have either not gotten the memo or else just has an unusual view of such things.
I've had it the last few years, at the very least. It worked out the last couple of years because I had a 8PM-6AM job during the work week, and I used to just party late at night with friends on the weekend. Now that I have a day job and school, though, it really is a pain in the ass.
Whatever the ultimate cause is, there are probably a lot of other things lumped in with it, since it's one of those things where if you meet seven of ten criteria you are put in that catagory.
If it's any help to you, Cesca was on Gabapentin for a while, but it required an ever-increasing dose to maintain its effectiveness and eventually hit a wall at 1800mg.
It's Lyrica she takes at the moment, along with painkillers as and when required.
I thought I'd chip in with that because she's not reading the thread anymore, she's had enough people in her life insist that there's nothing wrong with her and can do without the upset.
the "no true scotch man" fallacy.
It's been about four years since CFS was thrown onto the table, and all signs point to some form of it another three or four years before that. At this point I've been on every recommended treatment with some things more effective than others.
I don't deny that it's fucked with my head enough to perpetuate it, but this isn't in my head. I will fight anyone who tells me otherwise.
You have chronic fatigue syndrome? what are your symptoms like?
This is why you can't get better: the biggest problem with dealing with a mental problem is your admitting you have a mental problem. Think of it like an eating disorder. Sure, you could fight the diagnosis and evidence, but why? Doctors will be waiting for you when you finally want treatment, and won't think any more or less of you for stalling or going right away.
The help is there, go get it.
She exhibits none of the symptoms until she runs out of pills
I have no doubt that it exists, but I'm witnessing firsthand the rather revolting sight of someone who has discovered the magic word that makes doctors hand out opiate-derived drugs like candy just so she can fuel her addiction
Point being it isn't just in my head. There are physical symptoms that I cannot overcome. It feeds itself back around.
I realize that my slew of doctors have done what they can and it's on me now to suck it up. What's ended up happening though is that I've grown complacent, I guess, for lack of a better word. I made the mistake of defining myself by it, and it's just who I am now.
as for symptoms:
massive brain fog: i was largely unable to read - couldn't retain between the pages - this has since improved with Savella - concentration is still spotty
sleep is pretty much useless. in the event i do sleep for more than an hour or two at a time, it doesn't do much good.
my energy level fluctuates between normal level of function and not being able to get out of bed - various meds have had certain levels of effect
joint and muscle pain
headaches ranging from the dull days-long to migraines
the best way i can really describe it is that i just feel like i've heard my grandparents and older relatives complain about how they feel. doesn't encapsulate all of it, but it puts it into perspective.
I don't doubt that fibromylgia exists, but I think that it's going to become like ADHD, where it gets vastly over-diagnosed. After all, selling pills and treatments earns more money than saying, "Hey, that's actually normal. You just need to bear with it for a little while and it'll pass."
There are people who have migraine headaches which follow the classic symptoms but aren't severe or frequent enough to require prescription medications. I've had visual auras followed by only mild or complely absent headaches then nausea which were diagnosed as migraine related but not severe enough to require medical treatment.
In the ER we can usually tell which people are for real and which are faking. The people just looking for drugs are easy to spot, and usually don't get their way. When you come into the triage and say something like, "Oh, I get really bad migraines, but I'm allergic to morphine, toradol, NSAIDS, and nubain. All I can have is dilaudid and phenergan," you've basically set off every bullshit-detecting Spidey sense we have. And then we send you home, but not until we've done our due diligence with testing and cost the taxpayers thousands of dollars.
So no vicadin, methadone or oxycodone. Fibro is very real, but I do think some people abuse it and use it to get as many narcotics as they can as they can get their hands on.
You should try looking up Craniosacral therapy sometimes. It's chiropractic therapy version 2.0.