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  1. #41
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    I would say that it's impossible to answer OP's question at this time.

    The testing for fibro is subjective. Those pressure points are meant to be uncomfortable on everyone; the "positive" is the degree of discomfort/pain an affected person would have, as opposed to an unaffected one, with a specific amount of pressure.
    If the practitioner is skilled the test is reasonably sensitive, but unspecific. A number of conditions, both physical and psychiatric, or even just being really stressed and run down, can make someone qualitatively more sensitive to pain. If the practitioner isn't very skilled and exerts too much pressure, they will elicit a positive in an unaffected person too.
    A good test for a condition is both sensitive for the condition and specific to it.

    My view is that fibro will turn out to be some kind of immune-mediated connective tissue or muscle disorder. It makes sense in terms of the difficulty of getting a definitive test (the immune system, alas, is not very well understood yet) and the female:male ratio (autoimmune disorders tend to hit women at roughly twice the rate as men; the 95% female vs 5% male fibro diagnosis most likely means that either men are under-diagnosed or women are over-diagnosed, not that unusual with a condition that has both a wide, vague symptomatology and no decent test).

    Fibromyalgia has actually been described in medical literature for hundreds of years, under many different names. Kind of like PTSD.



  2. #42
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    Fibromyalgia has actually been described in medical literature for hundreds of years, under many different names. Kind of like PTSD.
    Florence Nightingale famously had a disorder which would probably be classified in the FM "spectrum" today. Neurasthenia, melancholy, hysteria . . . not all of the terminology used to describe symptoms or similar disorders were, or are, terribly "flattering" because the terms are so inaccurate, "loaded", or misused.
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  3. #43
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    Quote Originally Posted by TimelyImpulse View Post
    As someone who has been diagnosed with fibromyalgia, I find your comments just plain ignorant. At the very least, before you spout off about FM being pretty much a psychiatric problem, go to http://www.fibromyalgia-symptoms.org...gia_tests.html or www.fibromyalgia.com.
    .
    What she said.

    I was diagnosed maybe 6 months ago, put on medication, and my quality of life increased SIGNIFICANTLY. I couldn't even go to the dentist and get my teeth cleaned without having my entire mouth numbed, and even then I would be practically in tears from the pain. They might as well have been tearing all the enamel off my teeth with razor blades. I went yesterday for the first time since on the medication - I felt NO pain - I had NO anesthetic shots - I had NO discomfort - for the first time in my life. The girls and the dentist were practically dancing around the office. Ordinarily I go into the office in tears, just for teeth cleaning. I end up taking vicoden to try to kill the pain. A simple cleaning would last 2 hours because they would have to stop and give me breaks. They could not polish the teeth because the feeling of that gritty paste and the buffing head on the drill was just too much. It had been suggested I get knocked completely OUT to get my teeth cleaned.

    Fibromyalgia is NOT "in your head" like people want to think. New testing has shown that fibro sufferers have abnormally high amounts of Substance-P which contributes to misfiring and overstimulation of nerve endings. Spinal fluid can be tested for a definitive diagnosis.

    The day I was diagnosed, I sat on the table and cried when the doctor pressed on the 21 trigger points on my body. The pain was sooooooo bad. When I went back for a 3-month check after starting the drug, there were only a few trigger points that were still tender.

    It had gotten so bad I couldn't handle a hug from my husband or the cat sitting on my lap. Might as well have parked the family sedan on top of my legs.

    That is ALL gone, 100% now.

    And yes, I would think a horse "could" have it. We don't know enough to say yes or no, but anything is possible.



  4. #44
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    Auventera 2, you really are a wonder! You are so lucky to have been cured with medication and are back to 100%!!!! Didn't you get a low dose of Elavil? That is just so unbelievable that you are now 100% cured from fibromyalgia and are able to get on with your life. Good for you!



  5. #45
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    Aventura 2 - Love your success story!! I am so glad that you were able to find peace! I would love to hear about the treatments you used successfully.



  6. #46
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    Quote Originally Posted by Auventera Two View Post
    New testing has shown that fibro sufferers have abnormally high amounts of Substance-P which contributes to misfiring and overstimulation of nerve endings. Spinal fluid can be tested for a definitive diagnosis.
    It can not. Substance P acts as both a neuro and chemical transmitter and is elevated in a huge range of conditions besides fibro, from arthritis to allergic conjunctivitis and eczema.
    There is certainly as association between it and chronic pain conditions (chronic back pain too, not only fibro), and it's important to study, but jumping on it as a definitive test is far too hasty. It may end up being useful, though not as a sole test but as one criterion a la lupus diagnosis, or it may end up being just as clinically useless in its way as ESR ("ok, so this person has inflammation...of some kind...somewhere", only replace "inflammation" with "pain").

    Interestingly there's only a very weak correlation between increased levels of Substance P and a positive pressure-points test in fibro.



  7. #47
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    Quote Originally Posted by TimelyImpulse View Post
    Auventera 2, you really are a wonder! You are so lucky to have been cured with medication and are back to 100%!!!! Didn't you get a low dose of Elavil? That is just so unbelievable that you are now 100% cured from fibromyalgia and are able to get on with your life. Good for you!
    The dose has increased, and yes, I would say nearly 100% of all the bizarre pain and sensitivity is gone. I haven't felt this good since I was a kid!



  8. #48
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    Saying that symptoms are subjective is not the same thing as saying something is imaginary or "all in the head". Nobody is saying that FM is imaginary on nonexistent, but it IS completely and totally subjective, as in "I feel this" and "I feel that" where there is virtually nothing to measure except in the most broad and vague sense. And it is LINKED, very, very strongly, with psychiatric disorders. This is undeniable. That is also not the same thing as saying it IS a psychiatric disorder.

    You have a broken bone, that is OBJECTIVE--you can look at the bone or the X-ray. But if you have a migraine, that is more SUBJECTIVE, equally as "real" an entity and (I've had both) equally as likely to be painful. Subjective simply means "nothing that can be visualized, measured, or recorded by an outside observer". It does not mean imaginary, made-up, false, or confabulated. Pain, in fact, is ALWAYS subjective. Nobody can see it, feel it, measure it or characterize it except the sufferer.

    People who insist that "new testing" or "new research" has shown definitive results for this or that diagnostic procedure, treatment, or test for FM are not reading the actual medical literature, which is far less optimistic on these topics. They're reading self-help websites, usually funded by people selling remedies. There are lots of things that help, lots of things that are linked (loosely, for the most part) diagnostically, but nothing that is always and 100% accurate or effective, and no "cure" per se.
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  9. #49
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    Deltawave-- thanks again for adding such great analysis. I really wish there were a definitive test for whatever is wrong with me, but as noted, I had all the other tests to rule out MS, rheumatoid arthritis, lupus, etc. Subjectively, I feel like crap about 90% of the time; the other 10% I'm fitfully sleeping. I wish I was as lucky as Auventera to find a drug that pretty much cured me, but unfortunately I don't tolerate medications well. As a last resort, I'll take a couple of darvocet to sleep, but for the rest of the time, I just try and suck it up and live.

    Hmm. This should probably be a pm to you, but to keep it horse related, I did an 8 mile hunter pace in 1 hour 10 minutes yesterday and my horse does not have fibromyalgia.



  10. #50
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    Quote Originally Posted by TimelyImpulse View Post
    As a last resort, I'll take a couple of darvocet to sleep, but for the rest of the time, I just try and suck it up and live.
    I'm not sure if you have tried just plain Tylenol or ibuprofen, but most of the research out there has shown Darvocet to be no more effective in treating pain than plain ol' Tylenol. If it works better for you, great, but just an FYI.



  11. #51
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    Quote Originally Posted by Samigator View Post
    I'm not sure if you have tried just plain Tylenol or ibuprofen, but most of the research out there has shown Darvocet to be no more effective in treating pain than plain ol' Tylenol. If it works better for you, great, but just an FYI.
    Lol! You sound just like the last military Dr I saw! You *must* be in the medical profession!

    I was prescribed the Darvocet for pain, but I take it to help me sleep when I'm in too much pain to fall asleep. It's a little bit sedating, and the plain ol' Tylenol barely touches the pain. I've taken so much Ibuprofen I had bleeding ulcers. Combined with a nice hiatal hernia & GERD, ibuprofen is not my friend.

    I've tried vicodin, percoset, codeine and some crazy arthritic medicine that would have made my uterus explode if I got pregnant on it. None of them are tolerable. I got dilaudid (sp?) in the hospital when my uterus almost did explode after the birth of my son--- now that is some nifty stuff! However, since I like to remember my life, that just won't work for me during the day. Oral morphine is being considered, but it really is hard to function on narcotics--- although it sure does make me a braver foxhunter!!!

    If I were to subjectively categorize what hurts right now, it would be...everything. I spent 20 years scoffing at my mother because I thought she was just a whiny woman who couldn't handle a few aches and pains. Man, now I feel like a total bitch for ever thinking that of her now that I am so fortunate to have inherited this from her, as well as her strong Russian thighs (which are great for riding!!!)

    It's just very interesting to me that if you can't point to the specific physical mechanism causing pain, then it just can't be real, or that bad or require anything more than a tyenol.



  12. #52
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    Quote Originally Posted by TimelyImpulse View Post
    It's just very interesting to me that if you can't point to the specific physical mechanism causing pain, then it just can't be real, or that bad or require anything more than a tyenol.
    not true at all, re-read what Deltawave had to say. nobody is saying that people with FM aren't in REAL pain or that it isn't a real disorder. What we're saying is that we have no solid test for it that is both sensitive and specific to FM (can detect most cases and doesn't give a lot of false positives when things other than FM are going on), so we don't know how to reliably identify those people who have it and those who don't. We don't know enough about FM to know the pathophysiology behind it, what causes it, where the pain comes from, etc, and that information is generally really helpful when trying to develop a test for a disease and treat it. For example, how do you stop bleeding if you don't know where it is coming from?? Sure, pressure (or pain meds) takes care of the problem some of the time, but often you haven't really gotten to the source of the problem, you're just bandaid-ing the problem and relieving the symptoms (and not even always doing that!).

    The comment regarding Tylenol was nothing to do with FM, it is the data that is shown in the research. When subjects in a randomized trial received unknown pill A or unknown pill B for their pain, subjects found that niether pill was more effective than the other. Pill A and B being Tylenol and Darvocet. I'm not saying that your pain is not severe and all you need for your pain is Tylenol, I'm just stating the facts from controlled research studies. And like I said, if it works for you, great- it probably does help you to sleep, it probably is sedating, but when it comes to pain control, it's not better, that's all I'm saying. But the sedation is what works for you, so go for it!



  13. #53
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    I am new to this thread, but have recently been sent in this direction. Aparently there is a vet Brenda Bishop that has some research and articles on this. She seems to see a tie with Fungus. I haven't spoken to her yet, but am intrigued by the articles.



  14. #54
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    Oh no, not the fungus or "systemic candida" hypothesis! Steer clear. Be very afraid. Bunch of nonsense.
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  15. #55
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    Default Hmmm....

    Quote Originally Posted by deltawave View Post
    The reason it can't be definitively diagnosed is because, although the entity is certainly well described and real, it does not have a really useful, valid, reliable, reproducible and agreed-upon diagnostic test that allows a practitioner to make the diagnosis firmly and confidently. Many, many other things need to be ruled out first, and often (not always!) it is a "diagnosis of exclusion". That is not at all the same thing as saying "it isn't real" or that there is no way to be sure.

    And although many people are offended by this, it is just reality that FM is very, very often (not always!) associated with psychiatric conditions like depression, anxiety, previous abuse, etc. If everyone would stop thinking of things like this as stigmas or something which is the sufferer's fault or something you can just force away by sheer will, then it wouldn't be perceived as something shameful. It really is a pity, and a conundrum.

    But my point, I guess, is that since it's very difficult to get inside our horses' heads and find out what they're feeling or how they're perceiving things, this sort of diagnosis which IS (like it or not) very much in the subjective "this is how I feel" realm is extremely difficult to transfer between species.

    95% of sufferers of FM as adults are women, so that may be why it seems this way.

    I've done the former two many times, but the latter? Never successfully. There is no real, legitimate, widely accepted and proven "treatment", per se. Another reason the disorder is so hard to pin down. TONS of trial and error, and if you think doctors who have the patience to see it through are rare, well, there aren't very many patients who do, either, without doctor-hopping, self-diagnosis, self-treatment, abandonment of plans, skipping between traditional and nontraditional therapies willy-nilly, noncompliance, etc. Never mind lack of access to health care! There are views from both sides of the disorder, and not all the difficulty lies in simply "making a diagnosis" and "outlining therapy".
    As a Fm patient for over 30 years and diagnosed about 15 years ago, I would have to say it is not just "how one feels", sure it hurts like hell, but the loss of spasticity in the muscles leading to reduced range of motion, walking like a duck after getting up from sitting or lying down for a period of time, to the lack of strength in grip of hand, the never ending forgetfulness,the overwhelming I can't stay awake fatigue... those aren't feelings, Those are physical disabilities, which vary in severity from patient to patient. and as for the depression... my answer is, which came first ?the chicken or the egg?...seriously after years of dealing with this I have every right to be depressed, who wouldn't, as it affects what I can do, and when I can do it...and I don't like my body dictating to me about that...so what do I do? I buy a 15 acre farm, have 6 horses to care for every day twice a day, because I know that they are depending on me to haul my sorry a@$ out of bed every morning to come feed them...clean their stalls, turn them out, exercise them, and do it all again the next day.And after YEARS of this routine, I've found it is the best Rx for this ailment. I have been on every drug cocktail, depression meds...spasticity meds, seizure meds and all they did was make me numb in the head...no feelings, no worries, no cares... Not good to live a life that way.

    I absolutely think horse could have FM. The off again/ on again lameness with no explanation, the lack of movement on a continual basis(they are grazing animals btw, meant to move around)the Gemini syndrome(good horse/bad horse) for whatever reasons...ya, I think it could be "possible", but then again, I justmay be a crazy lady



  16. #56
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    I don't think even the "experts" on FM would argue that regular exercise and movement are probably the best idea for managing the disorder.
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  17. #57
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    Has anyone read any of the books by Isabella Bird? A noted traveller of the globe in the mid 1800s, fascinating stuff. At home in merry olde England she was morose, plagued by terrible spasms and pain, just a wreck. Travelling? Well, she rode all over Hawaii, Afghanistan, the Western US, etc, on horses and donkeys, everywhere....often alone.

    I wonder sometimes if our coddled first-world experiences don't allow some funky measure of 'stuff' to build up in our systems. She was relatively coddled and in terrible pain. Once she had to work her butt off to get fed, the symptoms disappeared.

    Those are her words, not mine...and I'm not remotely suggesting it was 'all in her head/psychosomatic.' I'm not saying that, at all.



  18. #58
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    I'm just wondering, as a late diagnosed Lyme (and it's Lyme, not Lymes) disease patient (now about 95% better after treatment), how many of you with fibromyalgia live in Lyme endemic regions?

    Just curious.



  19. #59
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    Quote Originally Posted by katarine View Post
    I wonder sometimes if our coddled first-world experiences don't allow some funky measure of 'stuff' to build up in our systems. She was relatively coddled and in terrible pain. Once she had to work her butt off to get fed, the symptoms disappeared. .
    Well, not only that, but when you are sitting around the house all day... or the office, it's awfully easy to think about those little aches and pains and funny feelings. When you are out traveling around and living well, you can stop thinking about a lot of them, and the ones that persist are easier to ignore.

    As a person who has suffered from gout, I know first hand that if you sit about and do nothing but eat and drink merrily, you are going to be in a world of hurt. Now if I start to feel even a memory of that, I change my diet and routine immediately.



  20. #60
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    Quote Originally Posted by LauraKY View Post
    I'm just wondering, as a late diagnosed Lyme (and it's Lyme, not Lymes) disease patient (now about 95% better after treatment), how many of you with fibromyalgia live in Lyme endemic regions?

    Just curious.
    I do. And I've been tested, and it was negative.

    As far as I understand it, a doctor needs to have done some pretty extensive "ruling out" before diagnosing FM. I underwent many tests over several years, including various blood tests that were repeated mutliple times.



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