Fibromyalgia

SmilingBluEyes · Apr 6, 2004

I am sure in the minds of some others here, PMS does not exist, either. Cause there is NO definitive and objective test to PROVE it does. So kinda like many things unseen, lack of faith makes it NOT so. Let one of your loved ones suffer a "non-existant" condition and see how quickly you jump on the band wagon to become a believer! :)

lscc4 · Apr 6, 2004

To all of you who have an opinion about what and how fibromyalgia is or feels like must not have it. Yes, I am a sufferer and have been for a long, long time. This condition affects all parts of my life, I am a bipolar patient and have been for a long time. Whether fibr. is a cause or consequence of depression Idon't know , the only thing I do know is that I have to structure and pace my life in a way that I can still function. Exercise and diet do make a big difference in the way that I feel, however the amount of sleep seems to be the deciding factor. I can't sleep due to the pain so I must take something for it. Fibra. seems to be an every going circle of trying to deal with pain and life. One seems to depend on the other. I am a nurse as well and do 12 hr. shifts like everyone else and am in constant pain somewhere in my body. It is difficult to be compassionate to patients who have their degree of pain, I am looking for employment that keeps me off of the floor as much as possible because when I am not working I am recuperating in order to go back to work. It deeply upsets me that fibra. has become a catch all dx because we who have this condition are not taken seriously and dismissed. Stress seems to be the deciding factor in recuperation and flare up of this condition. Thank you for all of your put. Please respond.

yaddadoit · Apr 6, 2004

I know from the information gathering I have done on FM that the majority of people who have it have difficulty sleeping. It would be really interesting to find out how many of these people have had sleep studies done and what the findings are.

fry.girl · Apr 6, 2004

To CBarnett, I have a negative R factor, however I have had painful joints in both hands, fingers, wrists, knees, elbows, feet, ankles, toes and occaisonally ribs for the past several months (since last summer). My ANA is positive and other tests are positive for inflammation. One of the docs I work with doesn't believe in FM and thinks everything is due to my arthritis. I do have unexplained muscle pain. My mother has severe RA and had both knees and hips replaced before the age of 50 and her mother died of scleroderma.
I don't know about what you can do to prevent RA..I have always been a healthy person and it came on suddenly. Just because I don't have red, swollen joints and a + RF my doctor won't treat me with DMARDs..I am seeking another Rheumatologist who is more aggressive because I don't want to be crippled in 10 years..I have 2 boys and a 1 yr old baby girl to raise..

TO: Beach Nurse: Thanks for the response...I am sorry to hear that your experience with your Rheumatologist was not positive...You should definitely seek a new one. I have had personal experiences with my husband's health that involved Professionals ignoring his complaints (specifically general practice and ER staff) and it turned for the worst in his case (aplastic anemia) as he almost lost his life :imbar ...but that is another story.

Anyways it is always my advise, to find a DR that "hears" you and don't let anyone brush you off and tell you that you are imagining pain or other chronic symptoms. This is you life and your health and sometimes (as you see witnessed in this particular forum) that some medical professionals find it easier to brush off things they do not under or cannot explain or are inconvenient to them.

I wish you the best!

Aura · Apr 6, 2004

Hello everyone. I think fibromyalgia could be real as I have done some research and there are certain things such as pressure points, etc. that are used to diagnose. I do think at times it seems similar to arthritis and I guess I would be depressed if I were in pain all the time too. I know some people dx with fibromyalgia and they do all seem to be dealing with depression to me. So if it is nothing but depression, how do we explain the pain they say they are experiencing? I can't say they are not experiencing pain, just because I don't feel it. I think it needs more research.

nicki2 · Apr 7, 2004

i know from the information gathering i have done on fm that the majority of people who have it have difficulty sleeping. it would be really interesting to find out how many of these people have had sleep studies done and what the findings are.

i know my fm is much worse with not enough rest. until i had my restless leg syndrome diagnosed and treated (take mirapex) i was up until 3-4 am every night...i almost had to quit work. rls goes hand in hand with fm. the lack of sleep from rls can contribute to the increase in the fm symptoms.

veetach · Apr 7, 2004

Yaddadoit, I would just like to say that if you look hard enough, you will always be able to find a doc who will substantiate any medical condition that you think you have.... I know a 26 yr old hypochondriac who found a doc to put a pacemaker in her heart, and she has not ever had any documented clinical cardiac abnormality....ever.

I think pain is a part of life. I am sorry that these people are having discomfort, however I do not think they should be classified as "disabled." I think there are times when we just have to go ahead and function, whether we are having pain or not.

I have seen RA patients in huge amounts of pain and still being active members of society. I have seen MS patients doing the same. My heart goes out to them.

veetach · Apr 7, 2004

I am sure in the minds of some others here, PMS does not exist, either. Cause there is NO definitive and objective test to PROVE it does. So kinda like many things unseen, lack of faith makes it NOT so. Let one of your loved ones suffer a "non-existant" condition and see how quickly you jump on the band wagon to become a believer! :)

sigh... :rolleyes: The practice of medicine is based on principles of diagnostics and treatment. what a chaotic world it would be if we were to accept anyones vague complaint about anything they were experiencing at any given time as a new disease.....

yaddadoit · Apr 7, 2004

I think I will withdraw from this discussion. There has been some excellent information presented and for anyone who cares there are great research articles out there... For those who don't care or aren't interested in listening to their patients complaints.... I sincerely hope that I will never have to place my trust in you as a caregiver or even a coworker.

Nightcrawler, BSN, RN · Apr 7, 2004

I was thinking of this thread in class today as I listened to the lecture on CNS disorders, most of which have no "definitive, objective test". By the definition of some of the users here, that means that people who suffer from myasthenia gravis, ALS, and even MS are hypochondriacs! MS is "diagnosed" by plaques that show up under MRI, but not everyone with MS shows the plaques, and some people with the plaques never show any signs of the condition. The point is that there are no definitive tests for MOST conditions of the central nervous system, but that DOESN'T mean that they don't exist.

Maybe if more men suffered from FMS, there would be more belief out there.

I will be starting a separate thread for those of us who suffer from this condition, or for those whe are legitimately interested in a exchange of information. Some great information has been given over this thread, but it is lost in a sea of frustration, disbelief, and prejudice.

LizRN7 · Apr 7, 2004

As someone who did not have fibromyalgia, and now does have it, I can report that there definitely is a difference. Constant pain of varying degrees of intensity in a minimum of 20 trigger points throughout the body is not something that can be ignored. Nor can, or should, the increasing volume of information gathered by research studies be ignored. Just google "fibromyalgia" to learn more

or use this excellent site for more info. Ignorance should not be an excuse for unkindness or less than professional caregiving.

RNPD · Apr 7, 2004

There is no definitive test for rosacea-but a doc can dx it based on how it looks. There is no definitive test for depression-again a dx is made based on what the patient reports and how the patient acts. Until MRIs were widely available, there was no definitive test for MS except autopsy-but the disease has been around for ages. How about Meniere's disease-dx by patient's reported symptoms and the doc r/o other dx that are definitive. My ophthamologist has to take my report of what I can and can not see to dx my myopia-he has no definitive way to do so other than the reported line I can see on the eye chart. I'm glad he takes my word for it and I don't have to wait for a "definitive" eye test before I can be prescribed eyeglasses! Those who need a "definitive" test to believe in fibromyalgia are just proving their ignorance and lack of knowledge of scientific theory & practice.

The pressure points used to dx fibromyalgia are not merely sore when someone "pokes" any area with too much pressure. These are specific spots and the pain is overwhelming-a 9 or 10/10. This pain occurs form the lightest of touches in the pressure point areas. I have had my husband give me a back massage and he inadvertantly pressed a pressure point with his thumb. I can nearly scream with pain-and the severe pain remains long after the pressure ceases, much longer than it should. He can press even harder on a non pressure point and nothing happens. I don't wish that pain on the worst skeptic here. The pain has nothing to do with over-use or muscle strain-it occurs in the absense of activity that might cause discomfort. It is a deep and generalized aching, coupled with sleep disturbances.

The point is that many people may come to the ED seeking pain meds for fibro (as well as countless other conditions causing pain). Some are drug seeking, but many are actually legit. Still thousands of others, like myself, have never visited an ER for pain relief, have never taken a narcotic for pain relief-but that doesn't mean we don't have pain. Just like there are degrees of severity with MS, so it is with fibro. Some have it worse than others.

I too was quite disappointed to see the judgemtal attitude of some on this board but with a few that is nothing new. It is difficult to change ignorance and intolerance. I was heartened to see many more who are compassionate and up to date on recent developments with fibro and other auto immune disorders.

I wish everyone who suffers from this disease a painfree night.