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Re: Fibromyalgia
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Re: Fibromyalgia - December 8, 2004 4:59:00 AM
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Yogi
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From: San Antonio, Tx., USA
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Pablo, very good summation. Nari, yes, and I would sure like to see more research on the muscle changes, it reminds me of RSD (I can't remember off-hand what it's called now.) Yes, it may be overdiagnosed at present, but you alluded to something I think maybe Fla.'s not familar with at present. I remember back before it was a diagnostic entity. John, these were the folks hunting for years for answers, and often were told it was "in their heads". You may not feel this way, but to me that's interpreted as medicaleze for "You're crazy", and folks tend to take that as an insult, as do I. Any way, the best thing to come out of the diagnostic criteria is that the ? finally became accepted as real. Perhaps as time passes research will produce a cure, or better treatments, but that couldn't happen until it became real. I, for one, am grateful to the Rheumatologists for that. We, as humans, want to know reasons. As my wife once said to a Doctor, I just want to know what it is. I live with it anyway, but it's the not knowing what I live with that bothers me the most.
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Re: Fibromyalgia - December 8, 2004 5:48:00 AM
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Alex Brenner PT MPT OCS
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I have not been real successful treating patients with Fibromyalgia. I agree with much said above and feel that these patients need a multi-discipline approach. This would include seeing dietician, mental health, physical therapy and possibly neurology. This is nearly impossible and logistically and financially can be very difficult for the patient and for the hospital.
I believe my failure is due to the fact that many of the patients have multiple, multiple musculoskeletal complaints and myself and the patient both get bogged down trying to address all of them. I usually spend most my time on patient education and encouraging low impact aerobic exercise. But like I said, I usually fail.
I currently work in a small clinic. It is unfortunate, but here these patients are all labeled. Everyone knows who they are. They are typically in the hospital every week and we all try to avoid them. It is a shame but obviously no one knows how to treat them or what to do with them. Nothing seems to work.
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Alex Brenner, PT, MPT, OCS
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Re: Fibromyalgia - December 8, 2004 5:09:00 PM
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PTupdate.com
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Too many people take the wastebasket diagnosis "fibromyalgia" the wrong way. Instead of confronting the fact that much of the problem IS between their ears, they hide behind a diagnosis name...."None of this is my fault, I have FIBROMYALGIA".
Did you ever see how many of them love to just blurt out to complete strangers they have the condition? How many people do that with prostate enlargment? I think these people miss out on the treatment they really need, because half of the medical field won't tell them how it really is. The ones that do get leveled with the cold hard facts either deny it, or instead just avoid addressing it as they should.
I'd love to see how much cultural influence occurs with this condition, ie does this occur at the same rate in some third world country where slacking off means loss of job and/or life?
John Duffy, PT OCS
[URL=http://www.PTupdate.com]www.PTupdate.com[/URL]
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John M. Duffy, PT
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Re: Fibromyalgia - December 8, 2004 7:16:00 PM
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tc
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From: Los Angeles area
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I am sorry to hear some of the really negative attitudes here. Yes, there are always those people with any condition who announce it and allow it to overwhelm their life. Even to let it "become" their life and the "reason" for all of their problems. But putting down everyone with the same diagnosis just because of a vocal, whiny majority is a disservice. Some people don't get the care they need just because they don't want to be labeled as complaining, etc. and don't want to carry around a "diagnosis" or stigma.
I have read about documented physical changes in many FM patients, including pain reception, circulatory issues (Raynaud's) and differences in the way their body responds to aerobic activity as well as normal vs. noxious stimuli. And although it may be more rare than not, I have seen FM patients really improve. Not 100%, but to a functional level where they are happy. These have been patients who are active in the treatment protocol and usually also employ other health care professionals (in a complementary way, not overkill of services). These have also been patients who really have a willingness to break out of the cycle. And they *are* out there, but if you aren't willing to see each patient as unique you will miss the chance to help them. If you categorize everyone walking in with FM as "overweight, sedentary, overstressed blah blah blah" - you are going to miss someone you could have helped.
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Re: Fibromyalgia - December 9, 2004 4:02:00 AM
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PTupdate.com
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I have not, nor has anybody else here placed such a label on these patients, especially in a blanketing manner. However, we must realize that there are some very strong personality traits that are exhibited by a majority of the people diagnosed with "fibromyalgia". Not recognizing these and not addressing them is plain wrong, and a disservice to the patient.
I am not here to be the patients friend. I am here to find out what is wrong with the patinet and do my best to get them better.
I get very frustrated treating these patients, and try my best to help them improve their quality of life. Most of the time they just don't stick with it and play an active role themselves.
Yes, these patients often have physical ailments, including changes of muscle structure on biopsy. Cause or effect? Not sure. But I gladly accept these patients as I feel I can make a difference in their lives, and often have....at least with the ones that stick with the program and follow the rules. These patients have become very close and very dear to me.
I also believe there are many diagnosed with fibromyalgia who may not even have such a thing. Often, they have so many other physical ailments that it is no wonder everything in their body hurts...usually from compensation and excessive energy expenditure just to life a daily life.
Duffy
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John M. Duffy, PT
Board Certified Orthopaedic Clinical Specialist
www.PTupdate.com
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Re: Fibromyalgia - December 10, 2004 4:17:00 AM
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Yogi
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From: San Antonio, Tx., USA
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tc, I agree. John, everybody's got some garbage between their ears. Yes, there may be a fibro cognitive pattern, it may be effect, effect, though. If any of us had the same problem, we might have the same responses. I get, between the lines, you are saying they are abnormal, or at the least dtrimental. Consider the possibility the behavoral overlay you see might actually be normal, and a beneficial (for that particular person) coping mechanism. Nothing wrong with attempting to guide to a more productive coping system, maybe we need dual training as PT's and Cognitive Behav. Ther. Ph.D's. Personally, though, I believe the efficiacy of CBT is grater in the telling, than in the reality. I really like Army's saying, so "As always, just my thoughts."
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Re: Fibromyalgia - December 10, 2004 4:32:00 AM
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Yogi
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Sorry about the typos. Addition to the above, anyone ever notice a possible correlation with FM (and similar entities) to the mesomorphic body type. If so, I suspect we would need to change the structure to one of the other types, make'em an ectomorph, for instance. That would probably have about the same success as changing the structure between the ears. While I'm musing, anyone have any somatosensory unwinding experiences with these pt.s. Maybe that would be effective. FYI, an FM pt. last evening told me the best and most immediate and long lasting and effective relief she's had was from acupunture with moxibustion.
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Re: Fibromyalgia - December 10, 2004 5:07:00 AM
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PTupdate.com
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Perhaps the response she noticed as placebo effect? If so, what would that imply?
Don't try and read between lines, and then make assumptions. Yes, these people are abnormal in a certain way. We are all abnormal in a certain way, so what? Their compensation or coping strategy is ruining their lives, and should be honestly addressed.
I have really fair skin, and over the years have had numerous pre-cancerous things burned off with liquid nitrogen, sliced off with a scalpel, or chemically destroyed while still attched to me. I know my skin is abnormal, and I cannot enjoy the benefits of my Italian wife. My dermatologist told me what I need to do in order to reduce future issues and future pain, and I take the steps to do so.
I did not get bent out of shape about the issue. I faced the facts: I have an abnormality, and if I modify my life and stay out of the sun as much as possible, and wear sunscreen whenever exposed to sunlight.
I do not see the two situations as being that different, but for some reason everybody becomes so dang sensitive and personal when it relates to "fibromyalgia". I just don't get it.
Duffy
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John M. Duffy, PT
Board Certified Orthopaedic Clinical Specialist
www.PTupdate.com
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Re: Fibromyalgia - December 10, 2004 1:08:00 PM
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Yogi
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OK, John, point taken, thanks. We got what we have, and we have what we got. And PT is about helping the body's coping. Psychology is about helping mental coping. Helping folks cope (better) consumes plenty of resources and we make our living at it. I think I was trying to make the point that, even when someone's coping or compensation strategy is not the best, in our opinion, or even "ruining their lives", it might be helpful to remember, as a friend of mine used to say, "Everyone's doing the best they can." So it might be the best they are capable of, in the sum total of who they are in this time. It's not to make excuses for anyone, but it has always helped me cope with things I couldn't change. I used to hear behaviors labeled as abnormal, in an institutional setting, that, when I thought about it, I realized and was able to point out, that the individuals were actually responding normally to abnormal environmental and social forces. You are also right, it is easy to interpolate and misconstrue in any communication, and I have immense respect and regard for you and every poster here. The acupuncture info was just that, feedback info from one pt., I thought might be useful case info for us, nothing more. Anyway, got to go.
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Re: Fibromyalgia - December 10, 2004 1:38:00 PM
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Jon Newman
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Hi John,
You stated: "Perhaps the response she noticed as placebo effect? If so, what would that imply?"
I'm not sure what that would imply. I suppose that it works quite well and is ubiquitous in any form of therapy, physical or otherwise.
If one is to use placebo to discredit someone getting better, they best be careful not to cut themselves on this double edge blade.
jon
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Re: Fibromyalgia - December 10, 2004 3:32:00 PM
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PTupdate.com
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Jon,
Very good point! Probably every one of us has "healed" someone in our careers simply via placebo effect, be it modalities, some ineffective manual technique, or even how we talked to them.
I am sure that there are some that would love to tell the FM patient "see, it was all in your head", but not say the same thing to the tennis elbow patient. I am not one of them.
Duffy
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John M. Duffy, PT
Board Certified Orthopaedic Clinical Specialist
www.PTupdate.com
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Re: Fibromyalgia - December 10, 2004 4:02:00 PM
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Jon Newman
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I do not make the distinction either for where else would pain reside?
jon
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Re: Fibromyalgia - December 10, 2004 6:06:00 PM
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Jon Newman
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This link was orignially posted by Ian Stevens over on NOI. I thought it was particularly balanced in its review of accupuncture. Take a look.
http://www.accampbell.uklinux.net/acupuncture/articles/touch.html
jon
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Re: Fibromyalgia - December 10, 2004 8:38:00 PM
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ericm
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From: Nanaimo, BC
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Scott, there are references to articles you may find useful in a discussion in the BullyPit from a few years ago titled "Pulling the Trigger"
eric
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Re: Fibromyalgia - December 10, 2004 10:15:00 PM
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nari
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From: Australia
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Just a few cents' worth....
The pain of fibromyalgia, tennis elbow,golfer's elbow, probably osteoarthritis, low back pain, rotator cuff, cervical spine - is looking as though it is all the same thing.
No-one is sure of its origin, the cause is in the eye of the beholder and his/her particular interpretation of the assessments. Doesn't make treatment plans any easier; but might in the future, narrow the choices right down.
At least it would help to avoid the dangerous phrase Duffy referred to: "all in your head".
Ironically, that is where it is happening...but patients need to understand what that means.
Nari
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Re: Fibromyalgia - December 11, 2004 12:10:00 AM
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Randy Dixon
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I did not get bent out of shape about the issue. I faced the facts: I have an abnormality, and if I modify my life and stay out of the sun as much as possible, and wear sunscreen whenever exposed to sunlight.
I do not see the two situations as being that different, but for some reason everybody becomes so dang sensitive and personal when it relates to "fibromyalgia". I just don't get it.
Duffy
I didn't get it either.
I used to feel the same way as you. I would also say that people who feel this way are as stereotypical as people who are diagnosed w/ FM.
That is, a male, 20 to 40, probably athletic or ex-athlete, proud of their health and ability to cope yet always mentions the pain or disability they are coping with, ("yeah, I blew out my shoulder playing football, but do you hear me complaining about it?"). Over time my attitude changed somewhat, since I saw so many women come in with the same complaints, certainly some were suffering from ME2 syndrome, but viewing it that way seemed to be putting the cart before the horse. It was recognized as a syndrome because so many women presented with the symptoms, not the other way around even if it eventually came full circle. I even started believing that much of the attitude/emotional behavior that I saw was a result of the same chemical/hormonal imbalance that seems prevalent in FM. It was real to them, and I began believing it was real, period, but I was still a bit of a skeptic. This has been changing slowly, but one incident that happened to me recently help clarify some things about this.
My wife had ovarian cancer, several surgeries, etc. After doing some research we went to see a GYN doctor for HRT that was recommended. A male doctor. I went with her so I could ask questions and understand what was going to happen. My wife explained the problems she had been having, problems I'd noticed as much as her. Looking at this guys face it was obvious he had stopped listening 11 seconds into the interview, you could see his thoughts (40 y.o. female, post hysterectomy, psychosomatic, expecting miracles, need to set her straight.) It was all I could do not to jump over that desk and pound the condescending smirk off his face. Later I also felt guilty because I know I'd had that same smirk many times. I, like he, thought I was being professional and realistic. What I was was arrogant, dismissive and unwilling to question what I "knew".
We went to a different doctor, a woman, and we explored some options which have worked well, but even if she had offered the exact same "pill" it would have been more effective, my wife would be happier and the result would be more satisfactory, because she took the time to try to understand, rather than the attitude that she already knew the answers that my wife didn't.
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Re: Fibromyalgia - December 16, 2004 4:14:00 AM
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Yogi
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Like what you said, Nari.
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Re: Fibromyalgia - January 1, 2005 1:35:00 PM
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Jon Newman
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In the Jan 1, 2005 issue of Spine journal, the insightful Nortin Hadler has an editorial. Here are some of the details.
Labeling Woefulness: The Social Construction of Fibromyalgia
Hadler, Nortin M. MD; Greenhalgh, Susan PhD
"Most diseases are both real–they cause pain and suffering; and socially constructed–their particular formulation reflects the social and historical context in which they are made. We will argue that in the case of fibromyalgia both the disease and the illness experience are real and socially constructed: No one has fibromyalgia. No one suffers from fibromyalgia. Instead, there are patients who suffer fibromyalgia.
Some 10% of people living in the community spend every day coping with widespread pain. Most have all sorts of financial and personal stresses. These people live or can live lives that are less pleasant, and less lengthy. They should be a great concern of any public health agenda.
Much of this is a matter for the body politic; much relates to economics and job satisfaction,48 but not all. Medicalization lurks for any of these people who find bodily symptoms pervasive whenever life courses out of their control. Uncertainty as to healthfulness will transform into certainty as to their fate as the victim of some disease that medicine has yet to identify. It is not the pain that drove them to seek medical care; it is the suffering consequent to the uncertainties the pain precipitates in their mind. It is suffering that is their chief complaint. It is suffering that demands recognition and care. When people with persistent widespread pain seek care, it is because they have exhausted their wherewithal to cope and are casting about for attention to their suffering. Isn’t “cognitive behavior therapy” a sophisticated attempt to educate these adults in self-awareness and in finding and choosing accessible alternatives in life? Can’t medicine learn to provide such as part of a treatment act? If medicine can’t provide such,49 these unfortunate patients should seek it elsewhere, perhaps in counseling to find and address some of the psychosocial sources of their distress. However, effective caring will prove elusive until it is realized that fibromyalgia is the social construction for their suffering."
jon
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[URL=http://www.sonymusic.com/clips/selection/30/064887/064887_03_03_30.wav]Evidence[/URL]
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Re: Fibromyalgia - January 1, 2005 2:25:00 PM
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FLOrthoPT
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that is what i said, duffy said, etc, just not so eloquently
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