Fibromyalgia

MzUnderStood, ADN, BSN · Apr 5, 2004

Once apon a time, PMS was all in the mind...

Never judge another until you have walked in their shoes.

SmilingBluEyes · Apr 5, 2004

If I ever wake up pain free
I will know Im dead

I guess if you wake up with FM pain, bad enough, you may just wish you were.....

dead.

auroranae · Apr 5, 2004

I am a nurse who was recently diagnosed with Fibromyalgia. I have done alot of research on this and in many ways it is a catch all term. There are some lab tests that may suggest you have it, but the only way to confirm diagnosis is based upon the "pain points" the patient has. There are a total of 18 pain points that are associated with Fibromyalgia and a patient must have pain in at least 11 of these points on a consistent basis. Most patients do not have pain in all places at once, but rather a few places that are always painful such as knees, ankles, wrists, etc and then random transient pain to the other pain points such as neck, shoulders, hips, feet, calves etc. There is also another group of symptoms that go with fibro... severe fatigue and weakness, memory loss- short term and often described as a "foggy" feeling or "forgetting what I am about to say", as well as insomnia. Because of this CFS is also thought to be part of the fibromyalgia family of illnesses.

Please note that the ONLY treatment for fibromyalgia is palliative. This means that the symptoms are treated since the cause is not yet understood. The palliative treatment is to treat the insomnia and increase physical activity. By increasing the amount of "good sleep" or REM sleep, which many fibro patients never cycle to before waking, and thereby increasing the amount of serotonin secreted by the brain, you can, in many cases, improve the patients pain tolerance. Serotonin is a natural pain reducer or anesthetic so the patient may experience pain, but it will be less severe and less debilitating and therefore, more tolerable. THe only way to increase serotonin secretion at this time is with drugs that are commonly prescribed for depression. Amitryptilline is the drug of choice, but patients with other health issues may be given paxil as a substitute.

There has been some correlation between depression and Fibro, but it has been found that it is a result of severe insomnia causing a reduced secretion of serotonin. Once that has been treated the depression symptoms are gone. But, the anti-depressant tx will continue to prevent insomnia from returning. These are not psych patients, they are neuro and rheumatic patients. Many have multiple disciplines affected by the fibro.

More than 70% of patients with fibromyalgia also have GI probs- namely IBS, but less than half of patients with a primary diagnosis of IBS have fibromyalgia. A large number of patients with fibro are later found to have Lupus. Many Lupus patients have fibro as secondary diagnosis. You can have fibro without Lupus, but some studies suggest that if you have Lupus, you will have or develop Fibro at least to some degree.

The most affected population for Fibromyalgia is women, the same basic group as those for Lupus and Rheumatic problems. Because of this, it is thought that these 3 illnesses are closely related which makes it harder to pinpoint the cause of any one of them.

Oh- and Fibromyalgia is considered a SYNDROME- which means it is a group of symptoms that alone may be a minor problem- ie: pulled muscle, sprain, digestive disorder, but when found together are something with a totally different cause and do not necessarily respond to treatment as separate problems. For example- treating IBS with traditional meds will in all liklihood not be as effective, if at all, in a patient with Fibro. The reason is not yet understood, but perhaps will soon be.

The reason for the sudden onset of this diagnosis is simple... it was only recently in medicine that woman's complaints have been really looked at and studied. PID is a recent dx as is Pelvic Congestion Syndrome. Does not mean they haven't been there, just means that doctors are actually listening to women's complaints and in so doing are starting to note patterns that were previously not seen.

40 years ago cancer was considered a catch all term for patients with various illnesses that a doctor could not diagnose or that did not respond to treatment. There were many doctors who did not "believe" in cancer. Because of this many people died who could have been treated successfully. Looking back it seems silly that doctors thought it a made up illness. I wonder if the same will be said of these "catch all" neuro and rheumatic illnesses and syndromes that we are seeing more of these days.

When treating a patient - with any illness- it is important to remember that you can NEVER know what they are going thru unless you too have gone thru it. Therefore, you can NEVER judge a patient. No matter how nuts they may seem, one day it may be you that is being looked at that way.

BTW- I was diagnosed with Fibro but am having symptoms that have affected my heart as well. I have been to see a rheumatologist who gave me the fibro dx but dismissed Lupus even though I exhibit many of the symptoms and have a familial tendency.

Her official report read" Patients with fibromyalgia are typically overwieght and inactive...Returning to work is recommended to prevent inactivity which will only exaccerbate the pain and symptoms of fibromyalgia". Even a learned person who nearly exclusively sees patients with fibro is not above stereotyping and in so doing may actually be causing more harm than good. According to her report I should be working my nursing job-- I am a visitng nurse and drive 100-150 miles a day seeing patients for 12-14 hours a day. I am currently unable to walk up a flight of stairs carrying a laundry basket or vacuum AND mop my floor in the same day with becoming short of breath, so fatigued that I cannot think or function, or experiencing such pain in my body that to move is nearly impossible. Add to that the still unknown heart problem- Pericarditis of unknown origin- again not a symptom of fibro at all...

well, taking care of my 6 children and trying to lead as normal a life at home is hard enough, but to be told that unless I am going to a paying job I am inactive is very frustrating and very predjudiced thinking.

I am sorry this is so long, but as nurses we must remember that to judge someone can prevent us from providing the care they need. I am on the other side of that judgement now and it is not a nice place to be. My pain and symptoms are very real, as is my fear that I may not be able to return to work, go to my son's baseball games, see my daughter's dance recital, keep my other daughter in college, because I am in pain and many times unable to walk or drive, or remember what I was doing or saying, or take care of my family the way a mother is supposed to. And because people tend to disregard my illness because it is "a catch all term".

SmilingBluEyes · Apr 5, 2004

Ok, just because you get a drug-seeker in the ED who is all "dramatic" as Tom says, and claims to have FM, does not mean it's not a legit problem for OTHERS out there. You can say people come in all hysterical for a number of "reasons", even"heart attack", being one. Does that then, discount MI as a medical condition requiring treatment? Based upon histrionics by some people? NO.....but because you can put your finger on MI or COPD or you-name-it, it's Really?

Autoimmune disorders and some other medical problems are not as easy to pin down. Does NOT mean you pass it off as a "fashionable" disease and blow it off as non-existant. NOT if you are a good, thorough, educated and caring medical professional, anyhow The whole gist of the start of this thread was an assumption that it's not a legitimate condition. I say that is wrong. I say that is a lack of education. And a lack of empathy. Too bad. :uhoh21:

auroranae · Apr 5, 2004

I love these "fashionable" diagnoses
Fibromyalgia
Chronic fatigue (Epstein Roseanne barr)
Hypoglycemia (not diabetes)
Mitral valve prolapse
~~~~~~~~~~~~~~~~
I hate say this, but since when is Mitral Valve Prolapse a fashionable diagnosis? And fibromyalgia can weakend the heart valves in much the same way that Rheumatic Fever does. If the same patient came in and said they had Rheumatic Heart Disease ( which they very well may have) would you be so quick to dismiss?

CallyRN · Apr 5, 2004

I am an Orthopedics nurse and I have FM. I had 15 of the tender points. Never a day when I am not in pain. I am on antidepressants and pain meds. But I go on with everyday living. I work full time. Yeah there are days I just want to sleep. But I have to keep moving. FM is a real illness. There is research out there. I would be happy to give you some of the research if you want to know more. I have researched it more and more since i was dx'd. Sorry...I just get upset sometimes when people say it is not real. I live it everyday. I have only been to the ER once for it.

SmilingBluEyes · Apr 5, 2004

I love these "fashionable" diagnoses
Fibromyalgia
Chronic fatigue (Epstein Roseanne barr)
Hypoglycemia (not diabetes)
Mitral valve prolapse
~~~~~~~~~~~~~~~~
I hate say this, but since when is Mitral Valve Prolapse a fashionable diagnosis? And fibromyalgia can weakend the heart valves in much the same way that Rheumatic Fever does. If the same patient came in and said they had Rheumatic Heart Disease ( which they very well may have) would you be so quick to dismiss?
yes I forgot to address that. MVP a fashionable dx? Gee news to me. It is considered a major concern even in the obstetric arena. Where do you guys get your information? I need to be reading your nursing journals.

auroranae · Apr 5, 2004

yes I forgot to address that. MVP a fashionable dx? Gee news to me. It is considered a major concern even in the obstetric arena. Where do you guys get your information? I need to be reading your nursing journals.

On the path to the FM dx I was told I had rheumatic fever. That scared my Mom nearly to death. My labs show that I probably had it at some time without knowing it since my last complete blood work up several years ago. Gee, nice of some patient to have shared with me.

But, FM being so unknown, no one seems concerned by the pain and drastic decrease in my mental ability or the pericarditis of unknown origin. I have a high tolerance to pain ( I gave birth to 5 of my 6 children naturally and they were 9 and 10 pounds) and only sought help after 3 days of pain so bad I cried with every movement I made. The chest pain I have ignored since last August when diagnosed -only because my DON called 911 when I did not look too well and my blood pressure was 210/180. I was refusing to go all the way to the ED.

I was told the heart was healthy and the pain and pressure and fluid would "go away" and not to worry about the abnormal stress test. I failed with flying colors! Me- a very active mother of 6 who walks and does yoga and plays soccer with the kids, and baseball and rides bikes... and now to be told I am inactive unless I am going to a paying job because "being at home" is not active. Try getting 4 kids ( 3 under the age of 9) out the door to school, taking kids to baseball, dance, church, work and other extra-curricular activities 6 days a week inactive. Oh and then I cook and clean and do laundry and light housework as my body allows...may take me a week, but I will get the floors vacuumed and mopped and the rooms dusted!

Again... I get the looks and rolled eyes... like this is a life that someone would choose to have. I would prefer my old life, the one where I could work 30 hours a week, take care of my children, pay all of the bills and feel very satisfied with the job I was doing. Now I am made to feel guilty for not being able to continue my normal life. It is sometimes worse to deal with than the pain and chest pain& SOB.

A modicum of sincerity from medical staff would go a long way toward helping me cope with the changes in my lifestyle that I cannot control when I go to a DR appointments.

Lorie5477 · Apr 5, 2004

First of all, if you had the disease then you would know it's VERY real and perhaps you nurses that it drives "crazy" should think twice before judging something you obviously don't know anything about. Live one day in the body of a Fibromyalgia victim and perhaps you'll change your minds. I thought us nurses were not supposed to be that judgemental? The pain and other problems associated with this disease are horrible. You didn't hear about it as Fibromyalgia years ago because it has been named many things over the years, try looking it up on the websites of the people who suffer every day or maybe just listen a little closer next time a patient with the disease talks. It has taken a lot of my life away from me and I wish every single day that it wasn't real, but it is and nobody should judge what they don't know or understand. As far as the depression part goes, yes, we are depressed just like every other chronic pain sufferer because a lot of the things you love to do become impossible to do. It saddens me that any nurse would doubt a patient in pain...that is one of the first things I learned in school...NEVER doubt pain unless you can prove that it isn't there. Educating yourself about this disease is important, after all, the disease doesn't go away.

jornac · Apr 5, 2004

It seems to me that there are a great number of people in this world that seek narcotic pain medication for whatever ails them. Anyone every heard of an "addictive personality".

There are also a great number of us with actual pain that try everything we can to avoid those narcotics!

Fibromyalgia is real!! Do some studying about the symptoms, and then consider someone with chronic pain that has to have evereything else ruled out prior to actually getting a diagnosis.

I have been diagnosed with FM after many years of chronic back and neck pain, having joints injected to help with the pain (without relief). RA was ruled out as the cause (my sister has RA). I had decided I would just have to live with the fact that I hurt all the time.

When I was finally diagnosed I had all but 1 of the pressure points positive for pressure pain. What a relief to have a diagnosis and find out that what I was suffering was real and I wasn't losing my mind!!! The best help I have found is to get a good night's sleep, (lessening the early morning pain) keeping active, taking anti-inflammatories, and staying busy with something else that keeps my focus. I personally believe that the fact that I was diagnosed with Celiac Disease (after years of malabsorption) is then underlying factor to my development of FM.

I tried a support group. What a joke!!! The people in the group were way more interested in talking about how disabled they were, what narcotic pain medications they were on, and how "foggy" their minds were, than giving positive support to each other. They all seemed amazed that I actually get up in the moring and work more that 40 hours a week at a job that requires a clear mind. Yes, there are days when I hurt worse that others and actually do have trouble focusing on things. Those are the days after I have had difficulty sleeping the night before. I cannot even consider laying around all day and then trying to sleep!

The members of the support group frankly depressed me. They were all very sad and I found myself feeling sorry for them related to the fact that they had taken the path they were on, taking debilitating medications, feeling sorry for themselves, and letting their disease control them. What a sad way to go through life.

Sorry this post was so lengthy, but there isn't one of us that can ever know how much pain and distress some one else is in without first experiencing the same thing.

SM2BRN · Apr 5, 2004

Can you feel your patients pain? No, then why are so many on here quick to judge. Just because you may have had bad experiences with some doesn't mean that all patients dx with FM are hypochondriacs or on anti depress. or pain meds. I though we were suppose to have empathy toward our patients? How can you show concern and empathize with someone comming into your ER or wherever that you have already formed a bias opinion about.

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.

Over-the-hill-Nurse · Apr 5, 2004

My daughter has Fibromylagia. She suffers from alot of pain and does not take narcotics, antidepressants etc.. she also went through alot of testing to come to this diagnosis. I do believe that it is real. I also wonder about the connection to RA/Auto-immune illness etc... I personally have lupus and RA, my mother died of MS. My daughter is constantly being checked for the MS and the lupus. Evidently there must be some type of connection. From everything that I have researched on the FM diagnosis, I believe that it is in the same catagory. Just not enough research on this to classify it. I as a nurse I try my best to provide pain relief, a open mind, and a shoulder to cry on to my patients who are experiencing alot of pain. I personally can not say they are not having pain and empathize with them and try to provide them relief the best way I can. My daughter is very active and works everyday. She also has joined in a swim program to help her relieve the pain. She also has the sleep problems and tries to do the best that she can. There have been many times when she has called me crying because she hurts so bad. Narcotics do not help her pain. Motrin and muscle relaxers have helped the most and also exercise and the swimming. For those who have not suffered with this kind of pain and saying that FM people suffer from depression should do alittle more research on the subject. I can provide alot of online info if anyone is interested and also some really good books that can enlighten you.