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.

[LilgirlRN, ADN, RN]

I don't think it's up to us to say if a condition is real or not. The condition is real to the patient. As it has been said it's diagnosis de jour lately. Also as stated it seems that depression is a tag along condition with this. Most of the people that have it are female, most of them have been abused as children. They are hypervigilant, meaning they hold their muscles very tight in anticipation, maybe a fight or flight thing? I think we can all relate to overuse of our muscles, we get sore, they get tight, they may spasm. We're uncomfortable, we hurt. Imagine having your muscles feel like that everyday because you don't know how to just relax them. I have sympathy for them but they have something chronic and it shouldn't be routinely treated in the ED. Just my 2 cents :)

[auroranae]

In many cases those who are suffering with Fibromyalgia also have other illnesses that may or may not have been accuratley diagnosed... often rheumatoid arthritis, lupus, scleraderma and any other number of autoimmune illnesses and syndromes go hand in hand with each other and unfortunately they are not always a black and white right or wrong diagnosis and treatment.

Sometimes it is the most frustrating thing on earth to feel awful and not even be able to understand it yourself, let explain it to others.

Never place judgement on our co-workers or patients, you can never really know how they really feel.

Some people can live with pain and illness and no one knows, while others cannot manage the most minimal of tasks ... everyone has different tolerances and different ways of coping.

[Miss Chybil RN, BSN, RN]

Patients with fibromyalgia have elevated Substance P in the spinal fluid and decreased levels of serotonin which causes an increased sensitivity to pain - along with a severe sleep-disorder. The FDA has just approved non-narcotic Lyrica - a drug used to treat diabetic neuropathy, shingles and other nerve pain - for the treatment of fibromyalgia. Other drugs are also being researched.

I'm increasingly offended by people who have neither fibromyalgia, nor medical degrees, trying to decide if the disease is "real," or not. People, do some research before you write off over 3% of the American population as simply attention, or drug, seekers.

http://www.sciencedaily.com/releases/2007/06/070601182522.htm

If you're more interested in science than your own opinions you might find the above artice interesting.

[nurseaboveboard]

Wow, this topic always offends folks who have "it" when those of us who can't buy "it" express our feeling about "it" but here's my two cents worth. I have two female cousins actually on disability for this condition! I would love to be a mouse in the corner to see their functioning and just how disabled they really are. I personally have never seen a case that didn't involve depression and/or anxiety, which as we know, CAN be disabling, but also responds so well to treatment. However, to get permanent disability for this condiation just makes me mad. That's the plain fact, but just my opinion. You know, I can remember how difficult it was for my sister to get help when she was dying, plus, she had lost her job through no fault of her own, as the company moved. She was profoundly deaf as well. And Lyrica? What a wonderful tool this pharmaceutical mass marketing is.

[I love my cat!]

Wow, this topic always offends folks who have "it" when those of us who can't buy "it" express our feeling about "it" but here's my two cents worth. I have two female cousins actually on disability for this condition! I would love to be a mouse in the corner to see their functioning and just how disabled they really are. I personally have never seen a case that didn't involve depression and/or anxiety, which as we know, CAN be disabling, but also responds so well to treatment. However, to get permanent disability for this condiation just makes me mad. That's the plain fact, but just my opinion. You know, I can remember how difficult it was for my sister to get help when she was dying, plus, she had lost her job through no fault of her own, as the company moved. She was profoundly deaf as well. And Lyrica? What a wonderful tool this pharmaceutical mass marketing is.

I am sorry your Cousins are suffering from Fibromyalgia and have to rely on Disability. Not many people can survive on the max given out ($12,000 a YEAR). The majority of people on disability get somewhere from $600-$800 a month and many do not even receive that much.

Your Cousins must have had excellent documentation from several Physicians regarding their complaints in order to qualify for SSDI because the Government doesn't just hand out Disability because someone is "having a hard time". There has to be a level of severity of the disability. People also have to have limited assets in their name in order to qualify (I think less than $2,000 in the bank).

I am also a little confused why you are mad that they are Permanently Disabled. It shouldn't matter what the Diagnosis is.....if the physical/psychological symptoms are interfering with their ability to do ANY type of work, they are considered Disabled. You can get Disability for all sorts of reasons, anything from anxiety to obesity. What might seem like a silly reason for someone to be getting Disability can be the same reason it cripples someone else.

You are right about people with Fibro having anxiety/depression. Who wouldn't be depressed having chronic pain every day and who wouldn't have anxiety knowing that many people refuse to believe that pain is what they say it is? I know I would be.

****To add, if you truly do not believe that your cousins are disabled and that they should not be receiving Government Assistance...DOCUMENT, DOCUMENT, DOCUMENT!!! Take photos, keep a journal.

There is a Social Security HOTLINE that you can use to report any suspected fraud. They take it very, very seriously and will investigate it.

Good Luck!

[Miss Chybil RN, BSN, RN]

Wow, this topic always offends folks who have "it" when those of us who can't buy "it" express our feeling about "it" but here's my two cents worth. I have two female cousins actually on disability for this condition! I would love to be a mouse in the corner to see their functioning and just how disabled they really are. I personally have never seen a case that didn't involve depression and/or anxiety, which as we know, CAN be disabling, but also responds so well to treatment. However, to get permanent disability for this condiation just makes me mad. That's the plain fact, but just my opinion. You know, I can remember how difficult it was for my sister to get help when she was dying, plus, she had lost her job through no fault of her own, as the company moved. She was profoundly deaf as well. And Lyrica? What a wonderful tool this pharmaceutical mass marketing is.

Did you read the article I posted? Here is an abstract from another:

http://www.ncbi.nlm.nih.gov/pubmed/9802912

Fibromyalgia syndrome is a musculoskeletal pain and fatigue disorder manifested by diffuse myalgia, localized areas of tenderness, fatigue, lowered pain thresholds, and nonrestorative sleep. Evidence from multiple sources support the concept of decreased flux through the serotonin pathway in fibromyalgia patients. Serotonin substrate supplementation, via L-tryptophan or 5-hydroxytryptophan (5-HTP), has been shown to improve symptoms of depression, anxiety, insomnia and somatic pains in a variety of patient cohorts. Identification of low serum tryptophan and serotonin levels may be a simple way to identify persons who will respond well to this approach.

PMID: 9802912 [PubMed - indexed for MEDLINE]

Here is some information about the pregabalin (Lyrica) that I mentioned in my previous post:

Pregabalin is used to relieve neuropathic pain (pain from damaged nerves) that can occur in your arms, hands, fingers, legs, feet, or toes if you have diabetes or in the area of your rash if you have had shingles (a painful rash that occurs after infection with herpes zoster). It is also used to treat fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Pregabalin is used with other medications to treat certain types of seizures in people with epilepsy. Pregabalin is in a class of medications called anticonvulsants. It works by decreasing the number of pain signals that are sent out by damaged nerves in the body.

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a605045.html

Many people who have fibromyalgia are being treated with narcotics to relieve their pain. As you know, narcotics have side effects that would render most of us unable to work. The pregabalin does not have such side effects. There are others, of course, and it doesn't work for everybody. This is something for patients and their doctors to worry about.

Anyway, you might tell your cousins to ask their doctors about it. You may give them their lives and livelihoods back. You never know...

[nurseaboveboard]

Dear I Love MY Cat...no WONDER we disagree, I'm REALLY allergic to cats! Actually though, I think cats are the most BEAUTIFUL of animals, and if I wasn't allergic, I totally would have one. I'll tell you, I have big problems with the ADA in general. As far as my cousins are concerned, I don't live near them so can't really form an accurate opinion. They certainly sound lively on the phone however! I think it's rare to have a disability that totally prevents one from doing SOME form of work. Couple this with the fact that I have known so many patients on disability during my career, and I'm telling you, so much of it is just CRAP. I have serious physical struggles myself, and actually my physician feels strongly that I absolutely would qualify for disability, suggested it to me, and offered to help me apply. Well, this made me break down allright, but not from relief, but from stubbornness! As long as I can walk, think for myself, and contribute, I WILL be doing some form of gainful employment. I want to be part of the solution, not the problem. Re others who posted after my post, I would like to see these brain substances measured on myself. And again, Lyrica? I suggest to you that women doctor more, medicate more, etc., and the pharmaceutical industry is hip to that. I'm not suggesting that people not take this medication, only that mass marketing is a huge tool and huge money maker. And this will probably put the last nail in my coffin, but I'll also suggest to you that the majority of folks that I've seen on disability could shortly come off the SS rolls by doing the following: Lose weight, exercise moderately, adopt healthier eating, stop smoking, stop drugs, stop drinking, and really look inside THEMSELVES and ask, "What can I do to improve my situation?" Oh, just one more thing, but along the same lines. Is it just my imagination, or am I seeing more and more people on carts?

[Miss Chybil RN, BSN, RN]

I'll tell you, I have big problems with the ADA in general. As far as my cousins are concerned, I don't live near them so can't really form an accurate opinion. They certainly sound lively on the phone however! I think it's rare to have a disability that totally prevents one from doing SOME form of work. Couple this with the fact that I have known so many patients on disability during my career, and I'm telling you, so much of it is just CRAP. I have serious physical struggles myself, and actually my physician feels strongly that I absolutely would qualify for disability, suggested it to me, and offered to help me apply. Well, this made me break down allright, but not from relief, but from stubbornness! As long as I can walk, think for myself, and contribute, I WILL be doing some form of gainful employment. I want to be part of the solution, not the problem. Re others who posted after my post, I would like to see these brain substances measured on myself. And again, Lyrica? I suggest to you that women doctor more, medicate more, etc., and the pharmaceutical industry is hip to that. I'm not suggesting that people not take this medication, only that mass marketing is a huge tool and huge money maker. And this will probably put the last nail in my coffin, but I'll also suggest to you that the majority of folks that I've seen on disability could shortly come off the SS rolls by doing the following: Lose weight, exercise moderately, adopt healthier eating, stop smoking, stop drugs, stop drinking, and really look inside THEMSELVES and ask, "What can I do to improve my situation?" Oh, just one more thing, but along the same lines. Is it just my imagination, or am I seeing more and more people on carts?

It does not matter whether it is your imagination, or not. You will see things as you wish and in no other way. Good luck to you.

[nursemoons14]

It does seem to be the diagnosis of the day. Here in central Illinois - we have the guru of fibromyalgia - an MD that "discovered it" and treats it agressively! I'm with the above posters - think it has more to do with depression than a true physical diagnosis.

I hate to sound like Im judging them but as soon as I take report on an ambulance and hear "history of fibromyalgia" its almost always associated with depression, manic disorder, or some sort of mental disorder. And they are usually (and not always) the biggest whiners in the dept.

[nursemoons14]

Patients with fibromyalgia have elevated Substance P in the spinal fluid and decreased levels of serotonin which causes an increased sensitivity to pain - along with a severe sleep-disorder. The FDA has just approved non-narcotic Lyrica - a drug used to treat diabetic neuropathy, shingles and other nerve pain - for the treatment of fibromyalgia. Other drugs are also being researched.

I'm increasingly offended by people who have neither fibromyalgia, nor medical degrees, trying to decide if the disease is "real," or not. People, do some research before you write off over 3% of the American population as simply attention, or drug, seekers.

http://www.sciencedaily.com/releases/2007/06/070601182522.htm

If you're more interested in science than your own opinions you might find the above artice interesting.

Listen, we are not saying that these people aren't feeling pain. All i'm saying is that they need to focus the research, not on pain management, but the source of the pain. aka. mental disorders. Just because you read one article doesn't make you an expert. I could pull out dozens of articles showing fibromyalgia is a farce made up by doctors so that they can treat the symptoms of depression rather then depression itself.

[everthesame, LPN, LVN]

My thoughts on fibromyalgia, fwiw, I think there are folks out there with a real disorder. However, I also think there are those people out there who say they have the symptoms or even lie about a history of fibro in order to get the meds that a lot of fibro patients are prescribed...narcs, sleepers, muscle relaxers and such.

I worked with a nurse who was diagnosed with fibro. If she didn't have fibro, she definitely had something else wrong with her. The change in her was dramatic. She eventually moved to a warmer climate because of how much worse she felt in the cold weather.

About fibro patients being the biggest whiners, I wonder if the really whiney, demanding patients are the ones who really have fibro or if they are the ones who just say they have fibro to get the drugs. We all know how demanding the drug seekers can be and I think it is mostly the true drug seekers who have created the negative stereotype many health care providers seem to have for a patient with the fibro diagnosis.

I do feel sorry for those patients who truly have fibro...not only are they dealing with the physical and emotional distress caused by fibro but they are also dealing with a negative stereotype brought on by our experiences with other patients who probably do not even have fibro.

[Miss Chybil RN, BSN, RN]

Listen, we are not saying that these people aren't feeling pain. All i'm saying is that they need to focus the research, not on pain management, but the source of the pain. aka. mental disorders. Just because you read one article doesn't make you an expert. I could pull out dozens of articles showing fibromyalgia is a farce made up by doctors so that they can treat the symptoms of depression rather then depression itself.

If I was only "offended" before, I must say I am flabbergasted by your post. I have done more than read one article on fibromyalgia. The articles I've posted ARE about the RESEARCH and the findings after such research.

I have fibromyalgia. I have suffered with it for over 7 years. The pain gets so intense some days I can't get out of bed. That was before I began taking Lyrica. I have never been on disability and in the last 7 years I have earned one bachelor's degree - I'm working on the second. I've worked and maintained my home and family. I did all of this, even though the mere act of my son poking me on the shoulder to get my attention caused me excruciating pain. I might add, I delivered this son eighteen years ago and three others before him without any pain intervention, whatsoever. I used to have a very high tolerance for pain and I can "handle" it. Shoot, I used to get my teeth filled sans Novocaine! Maybe, that's why I could get through the last seven years with only Lunesta to help me deal with the pain from my fibromyalgia. I don't know. I know many people who have been completely debilitated by it and by the drugs their doctors have given them to treat it.

You present a chicken and egg argument - are fibromyalgia sufferers feeling pain because they are depressed, or are they depressed because they are in pain? I would think nurses would find this question irrelevant. Pain is pain. Depression is depression. Anxiety is anxiety. None of these should be dismissable by anyone - especially nurses. These are all very dangerous symptoms and diseases. Instead, some nurses choose to judge which pain is esteemable and which pain need not be addressed, even which pain is real - or they choose to make their own diagnosis based on cousins who live far away, or people riding carts in the supermarket.

It took me a few years, after first noticing the physical symptoms of my fibromyalgia, to admit I was depressed. I didn't realize I had anxiety until I didn't have it anymore - after I started taking Lyrica. Since then my depression has lifted, I can do many things in a day,(I even practice yoga almost every day), and I really don't think dying is a viable alternative to living, anymore. This is probably due to the fact I am no longer in pain, (I still have a little), but it is more likely due to the fact Lyrica has raised my serotonin levels and lowered the levels of Substance P in my nervous system. Increasing serotonin levels IS treating depression, by the way. (Please, post links to your studies disputing the Substance P and serotonin connection to fibromyalgia. Hopefully, they will be published in reputable journals, and/or by the government. I will be glad to read them. I'm always searching for information. Unlike others, who remain willfully ignorant.)

In the end, it is neither my story, nor the lady with the cousins whom she thinks don't deserve disability checks because they seem chipper on the phone, that really matter. It's the science that matters. Thank goodness for the people who keep searching for answers, as opposed to the ones who think they already know them. If not for the searchers, I would still be in pain, depressed and anxious. I posted these studies and talk about the treatment that has helped me because there are many who are subscribed to this thread who are still suffering from this disease and from the bigotry shown them by simply admitting they have it. This information may help them. It may not, but it should offer all of us hope simply knowing there is a chemical component to this disorder which may be remedied. For those who do not suffer, it should prompt you to keep an open mind and allow you to better care for your patients.