Fibromyalgia

[veetach]

What are your opinions, nurses? Is Fibromyalgia a justified condition or just a basket term ? I am interested in your feedback. It seems like we see a large number of patients (usually women) with "fibromyalgia" and the numbers are getting larger and larger.

I even had a patient tell me that fibromyalgia patients were predisposed to trigeminal neuralgia.

[lukezgal]

I agree with some of what you say and disagree with a lot of what you say! AIDS wasn't around 50 years ago, neither was alot of other diseases and conditions. So how can you turn around and say that just because FM has no proper diagnostic test, that it is not a legitamite condition. Who are you all to judge on someone else's pain? At Uni i was taught pain was whatever the patient says it is, and I believe that. When I see someone in pain, I justify that pain and try my hardest to help. That's what Nurses do.

[nursenatalie, ADN, RN]

I was given a bad first impression of fibromyalgia, we learned about it during our Psych rotation...

[Over-the-hill-Nurse]

I think I would have wrote that word for word. I do not wish to offend anyone, but you offended me. Who do you think some of you are? How dare you. Like stated earlier, just because you had some bad experiences doesn't mean that diagnosis isn't real. Yes, there are many people who take this diagnosis too far and some doctors Dx people for lack of something better (shame on them), but I cannot believe so many nurses that are supposed to be empathetic are so inconsiderate and narrow-minded. My sister-in-law has FM, and she is not faking it one bit. I do not think I have to explain or make excuses anymore. Yes there needs to be more research on it, but don't judge so quickly. Believe it, some people have it.

I agree with you totally! My daughter also has it and she isn't faking it either! Her pain is very real. I applaud you for speaking out.

[nicki2]

FM is not a new illness. Fibromyalgia has existed for decades, however doctors have only recently begun to understand and diagnose the condition. Since the early 1800's physicians have recognized and written about a condition involving pain, stiffness, and disturbed sleep calling it muscular rheumatism.

In 1904 a doctor introduced the term 'fibrositis' into the medical lexicon to indicate the sore spots found in patients with muscular rheumatism.

Finally, in 1987, Don L. Goldenberg, M.D. reported on the symptoms and treatment in 118 patients described as having fibromyalgia. The diagnostic criteria for classifying fibromyalgia were finally established in 1990 by the American College of Rheumatology.

Recently more and more information concerning the central nervous system and its connection to fibromyalgia syndrome and chronic fatigue syndrome has been emerging.

There seems to be for some patients a relationship between FM and Chiari malformation. Additionally, FM was 13 times more frequent following neck injury than following lower extremity injury.

Physicians from the Chicago Institute of Neurosurgery believe from their findings that patients with FM have quantifiable neurological deficits.

Peter Rowe, MD, John Hopkins, wrote, "Recent studies have identified a strong association between chronic fatigue syndrome and several related syndromes of orthostatic intolerance, the most notable of which is neurally mediated hypotension. Because chronic fatigue is an extremely common symptom in those with fibromyalgia, we sought to determine whether abnormalities in response to upright tilt table testing would be evident in those satisfying the ACR criteria for diagnosis of fibromyalgia....These results identify a strong association between fibromyalgia and neurally mediated hypotension."

And lastly, regarding how many of you think the pain is not real: Per Ron Kramis, Ph.D., R.S. Dow Neurological Sciences

"Central sensitization, defective central inhibitory mechanisms, and/or central deafferentation can produce hyperexcitability of pain-related nociceptive spinal neurons. This hyperexcitability can provide a neuronal basis for pathologically persistent pain. It is often not recognized, however, that sensitized, disinhibited or deafferented central neurons can be drive to "painful" levels of activity by input from non-nociceptive afferents...i.e., from afferents which normally mediate only non-painful sensations associated with light touch, normally innocuous deep pressure, normal movements, and normally innocuous warmth or coolness. This type of pain, i.e., "non-nociceptive pain," can be as severe as nociceptive pain and often may be more distressing due to its apparently inexplicable origin. Unfortunately, because it is mediated at least partly by physiological mechanisms which differ from those that mediate nociceptive pain, non-nociceptive pain is often unresponsive to interventions effective in relation to nociceptive pain. Considerable evidence suggests that fibromyalgia may be one form of persistent "non-nociceptive" pain."

If you are going to be in the medical profession and treat patients, then you should be informed. Yes there are patients that will "pretend" to have a number of illnesses in order to receive either drugs or attention....but just because you do not understand an illness, does not make it real.

[teeituptom, BSN, RN]

Show me a test that is completely Objective and I will believe in FM

Not by a test that is completely Subjective by its nature.

[zenman]

Posted by Silkybo: Everyone I know with fibromyalgia is A. A hypochondriac B. Clinically depressed or C. a drug seeker. I dont believe in this diagnosis.

I'll use my psych nurse training here and tell some of you that you are just plain stupid for people that are normally considered educated. My wife has FM and was very "happy" to finally get a diagnosis as she thought she was just losing her mind. She is also very happy with no sign of depression. She went to support groups for a while but quit since all they did was talk about their new meds that week. She also earned a 3rd degree black belt in Hapkido after her diagnosis but has had to stop that activity. She also continues to work as a special ed teacher. Other FM people are totally disabled.

[auroranae]

Show me a test that is completely Objective and I will believe in FM

Not by a test that is completely Subjective by its nature.

Tom- The problem you have is that you cannot look at a lab result and say "AH HA!" there it is! WEll, with FM you can do that in a sense... but it sounds more like "AH Ha, that's not it either!". The tender points are a criteria but not the only dx tool. There are a battery of lab tests that are done and based on the ruling out of all other possible problems, FM dx is given. If it is not Rheumatic Fever and it is not Rheumatiod arthritis and it is not Sarcoidosis and it is not Lupus --- all of which have nearly EVERY SINGLE SYMPTOM AS FM-- then the we know it is FM. There are studies and diagnostic tools in the works. I go to Hopkins Rheumatology for my FM and they are really advancing in understanding, but it takes time.

I was at Hopkins in 1982 for a lecture about AIDS. I still have the notes from that lecture. THEY ARE ALL WRONG according to the standards of today. But, we know that AIDS was and still is a real illness. The tests they did then were worthless in detecting it, they suggested an Autoimmune disorder similar to LUPUS or RA... and that is how they first approached the disease. As they learned more everything about how to diagnose and treat and even how the disease was transmitted was re-thought and relearned and retaught to the public. It just takes time to fnd what they need to know, doesn't mean the test isn't there...they just do not know enough about the illness yet to do the right series of tests.

The same is true of HELLP Syndrome in pregnant women. There is a large number of women with this, but I wonder how many on this list have ever heard of it? It kills mothers and their babies every year in the US... it is one of the leading causes of infant mortality and premature birth. And there is still no positive test for it...

If there is no test than it does not exist?

[zenman]

Posted by VeeTach:here too, Tom..... hey! last week I triaged a patient with FM AND RSD! what kind of hell is that????

Have you really seen a patient with RSD? A doctor friend of mine had it. If I did, I think I would just shoot myself.

[missmercy]

As a nurse who functions -- and pretty well -- with FM, I have to admit that I was disappointed by the negative and judgemental slant this thread took from the get go.... when I first saw the title, I was hoping to hear about others who were surviving and instead I found Really harsh stuff!!! So, I quit reading. Then, I would visit on occasion -- just to see how the post was going. I was So thrilled to hear that not all of my colleagues were bashing those of us who have been diagnosed with this. Hey!! I understand that a number of you were not angry or critical about the diagnosis but were addressing the behaviors that SOME patients have presented to the ER with etc. I can relate to that frustration! I get pretty yanked when frequentlflyers reappear and ask for meds AGAIN -- having tried none of the alternatives or treatment options. THat drives me insane too!! However, I have learned that just because I am not bleeding profusely in your lobby or have some huge growth or am bringing my limb in in a walmart bag -- doesn;t mean that I am not REALLY hurting!! There are days when the pain is enough to drive you crazy -- you can't sit still, but it hurts to move... there are days when I can do just about anything. I can't tell you how I dreard the awful days and lray for the good ones!! I do not medicate until I have to -- I try to keep active, eat right, exercise as able and get adequate rest ( whatever that is). My meds are my defense for the really bad days.

I am sorry that some of you have had to deal with the depressed, drug seeking behaviors of some. I am sorry that they have jaded your sense of compassions some -- but I sure don't blame you for feeling frustrated and angry about those behaviors!! I am too!! Why?! Because those folks are hurting themselves, and hurting the rest of us who are really trying!

Thanks to the many who have posted supportive and thoughtful words -- for those who challenge the lack of education r/t FM and to those who suffer withit! Hang in there!! Some day, who knows when... we'll know alot more about all sorts of medical conditions!! We have to be patient, support each other and hang tough!!

[MzUnderStood, ADN, BSN]

Leave your beliefs at home. Treat patients with respect that you would not only want but demand if it were you or a loved one in that same situation.

Stop being so judgemental. If you want to be in a profession where you can police behavior might I suggest law enforcement?

For years some women suffered with PMS only to be told it was all in their minds. Now studies are showing quite the opposite.

Who posting in this forum can sit in judgement of another? Who can determine another's pain or level of discomfort? If you have never have FM or have suffered from or with CP consider yourselves blessed and do not judge those who do.

First of all do no harm...in word, thought or deed.

[spiritus]

20 years ago we never saw that as a diagosis

now everyone it seems has it

The only steady fact about it is that there is a 99% correlation associated with clinical depression. THAT IS TRUE....

another dx we see all the time in the ER that makes us TRY, dear one, to

NOT be so judgemental about those of us who DO have this condition:crying2: ...it is

a lasting effect of ME....myalgic encephalopathy...

every single one of them are on anti depressants and anti anxiety agents...I'm not, BUT the reason I'm not is that MINE gets WORSE with the anxiolytics,

and I hate the fuzziness that I get with SsRI's.

Is there any single test that confirms it???? No, but they are working on one,

or at least trying to...

Why is it so common now ????? Nutrition deficits...the earth doesn't have the proper soil content to grow nutritious food....see Aaron Wolfe, Ph.D, and his

Clinic...TheWolfeclinic.org will give you some good information...IF you really

are that worried about this, remember that some of the sufferers

Maybe its in the water??????

Umm, possibly...they are discovering that ME is a VIRUS, that can be PASSED. Why CAN'T fibromyalgia be passed

in the water??

Teeituptom, I apologise if i've caused umbrage in any way, but fibromyalgia

is PAINFUL. One, however, HAS to be willing to take responsibility for the pain,

and do whatever feels good to get past the worst stuff...sleeping it off, making love, swimming, sitting in a hot bathtub, hot pads, cold pads, exercise...some things need WORK. And enjoy yourself on the golf course...

the information I have is BRITISH by the way; I can't say whether the AMERICAN stiuff might be a bit more comprehensive.

Spiritus

[yaddadoit]

Teeituptom-- Please let your supervisors and coworkers know how you feel and request that you not be assigned patients with an FM diagnosis. It is truly unfortunate that a definative diagnostic test has not yet been developed or discovered for FM. However, in the meantime, please keep in mind that FM is truly a medical diagnosis and if you can't provide objective care to FM sufferers you need to be responsible enough to let your fellow staff members know. You are a great example of why people who have FM "time" their visits to make sure that either certain people are or aren't working when they come in seeking help. I also believe that the diagnosis of FM is overused. I'm not a doctor. If I have a patient with that diagnosis it is not within my scope to re-diagnose. One of the things I have observed, however is that once someone is diagnosed with FM a lot of health care providers tend to turn a deaf ear to any future complaints of pain, discomfort, etc. Recently while working on an orthopedic surgery unit I took care of a patient in her early 40's with an FM diagnosis. Because of her diagnosis all of her providers disregarded her increasing complaints of hip pain--until she could barely walk she had severe degenerative arthritis and had to have a hip replacement! Did her FM symptoms resolve? Absolutely not-- but the hip pain and decreased hip mobility did. On a personal note, I have a very good friend and coworker for more than 15 years who was dx'd with FM approximately 6 years ago. She was eventually labeled as a "frequent flyer" by the medical profession whom she was trying to gain help from. She finally found a neurologist (you got it, she doc shopped until she found someone who would listen to her and provided her with the respect she is entitled to as a human being and as a patient) who did additional work up for her. Her experience have been a total nightmare and I truly wish that she would put them in a book. Depressed, absolutely! In part caused by a feeling of helplessness and the condemnation she received by less than objective medical "professionals". Fibromyalgia is still one of her two primary diagnosis... the other is multiple sclerosis. This wonderful kind hearted woman / nurse / mother / former ballerina has multiple sclerosis. Because there are still so many health care people out there who "turn off" their objectivity when someone with FM diagnosis or FM symptoms comes along, no one bothered to listen to her symptoms of MS. My friend had several productive years that she could have spent enjoying life had someone listened to her. Instead, she spent those years and a lot of time and money trying to obtain medical help for her symptoms and getting the door slammed in her face over and over again because she knew that something was wrong with her and no one would believe. As nurses, we have a professional responsibility our patients. If we are unable to give those patients the care they need, if we are unable to support a diagnosis (you might not be able to prove it... but can you disprove it????) that a doctor has made, then we probably shouldn't be nurses. At the very least, we shouldn't be accepting the responsibility for care for patients who have a diagnosis that we are unwilling to provide proper care for. So, do your patients a favor, either educate yourself, trust and believe in what your patients are telling you (while using some good nursing judgement of course!) or remove yourself from caring from patients whom you are providing a disservice and possibly even harming by your care.