What do you think of fibromyalgia?

NurseGirl525, ASN, RN · Apr 6, 2014

Let me educate you a little about fibromyalgia. I have had it since I was 15 years old. It is an extremely painful condition that researchers are having a hard time finding successful treatments for. And yes there is a test that will show that you have it. A lumbar puncture will show elevated levels of Substance P in the CSF fluid. The problem with prescribing antidepressants is that the don't fix the right receptors in the brain. So they are basically useless. Increasing seratonin to make you happier does not fix the problem.

I have daily aches and pains. Some days it is difficult to get out of bed. I take pain meds every morning to help me go. Anytime I take an antibiotic or steroid for an illness or I do too much exercise I end up in a flare up. A flare up is 100 times worse than my everyday pain. I literally cannot be touched at all. Lightly touching my skin sends pain all throughout my body. It hurts to brush my teeth, to brush my hair, to even get a shower and let the water hit my skin. People who do not have this condition can absolutely not understand the amount of pain I am in during a flare up. I cannot comfortably sit in a sit when this happens. Fortunately, my flare ups are few and far between. But I did have a horrible sinus infection a couple of months ago and my only options were to take prednisone and an antibiotic. After about 48 hours the flare up began and lasted for 2 weeks. I was miserable. My pain meds do not touch my flare ups. And I take pretty strong ones.

It is not in my head, not about depression or anxiety, it is a real condition. My professor in physiology right now is getting her doctorate and is doing her dissertation on fibro. Her whole paper is essentially how we are treating this condition wrong and what she thinks will fix it. She has some pretty good ideas and I am anxious for her to get it published and see if she can change the world for those of us that suffer from it. But for those people who think it is a "catch all" diagnosis or it doesn't really exist except in the minds of those who have it, I challenge you to live in my shoes for a week and do what I have to do to adjust my life on a daily basis. You would be over it in a day. :yes:

KelRN215, BSN, RN · Apr 6, 2014

I notice the Lyrica is often prescribed for these patients. I also notice that it is heavily advertised.
Call me cynical, but I see a commercial exploitation component here. What do you all know about Lyrica?

I believe that Lyrica (Pregabalin), like its sister drug Neurontin (Gabapentin), was originally introduced as an anti-epileptic drug. It turns out it's not a very good AED- I mean in almost 5 years of inpatient Neurology I can probably count on 1 hand the number of patients I saw on it for seizures- and is used more frequently for neuropathic pain these days than it is for seizures.

It is most definitely highly advertised. I have issue with the commercial advertisement of prescription drugs, no matter what drug it is. Especially since research has shown that if a patient walks in and says to their primary care "I think I need Lyrica", "I think I need Prozac", "I think I need Prilosec" whether its based on a commercial they saw, something they read, something their Great Aunt Sue told them or a true belief that they could benefit from this drug, the provider is likely to prescribe what the patient asks for.

OCNRN63, RN · Apr 6, 2014

I find it interesting that most of the sufferers that I see are also on a laundry list of other meds such as prozac, lyrica, valium, etc.
I'm not saying that it doesn't exist, but only once I took a patient's blood pressure and she was very humble, very put together, seemed intelligent. She acted like the action absolutely killed her. She wasn't there for pain at all, it was for other issues she was having.
So far, only one I have seen that I thought may actually have it.

Well, wouldn't you be depressed and anxious if you were living with chronic pain, and had to deal with health

care professionals who were dismissive of your symptoms and thought you were a malingerer?

There are no lab/diagnostic tests to prove someone has an anxiety or depressive disorder, yet few health care providers consider such diagnoses bogus. (I'm not suggesting fibro is a mental health disease, just using it as an example.)

Pts. with fibro deserve to be treated with the same compassion and understanding that we give the rest of our patients.

SamRNmedic · Apr 6, 2014

My mother has systemic lupus as well as rheumatoid arthritis and has also been diagnosed with fibromyalgia. She does not take Lyrica or Gabapentin though.

Samantha, RN

LPN 2001, Medic 2005, ADN 2011, BSN graduation is May 3, 2014!!!

Sent from my iPhone using allnurses

OCNRN63, RN · Apr 6, 2014

I notice the Lyrica is often prescribed for these patients. I also notice that it is heavily advertised.
Call me cynical, but I see a commercial exploitation component here. What do you all know about Lyrica?

I'm familiar with it being prescribed for peripheral neuropathy due to diabetes or as a result of chemotherapy.

ComeTogether, LPN · Apr 6, 2014

I think that the pain is real and the symptoms are real, but that there is an underlying cause that they've yet to figure out. I also think many people are over-diagnosed with it, simply because doc's don't know whats wrong or don't try hard enough to figure it out. I think in many cases, it's likely that there is something else going on that there is a diagnosis for, and in some cases it's indeed still a mystery.

I can sympathize to a degree with people who are diagnosed, because my diagnosis of ADHD isn't taken seriously most of the time, and it is very distressing. Obviously, on a different scale.

OCNRN63, RN · Apr 6, 2014

Let me educate you a little about fibromyalgia. I have had it since I was 15 years old. It is an extremely painful condition that researchers are having a hard time finding successful treatments for. And yes there is a test that will show that you have it. A lumbar puncture will show elevated levels of Substance P in the CSF fluid. The problem with prescribing antidepressants is that the don't fix the right receptors in the brain. So they are basically useless. Increasing seratonin to make you happier does not fix the problem.
I have daily aches and pains. Some days it is difficult to get out of bed. I take pain meds every morning to help me go. Anytime I take an antibiotic or steroid for an illness or I do too much exercise I end up in a flare up. A flare up is 100 times worse than my everyday pain. I literally cannot be touched at all. Lightly touching my skin sends pain all throughout my body. It hurts to brush my teeth, to brush my hair, to even get a shower and let the water hit my skin. People who do not have this condition can absolutely not understand the amount of pain I am in during a flare up. I cannot comfortably sit in a sit when this happens. Fortunately, my flare ups are few and far between. But I did have a horrible sinus infection a couple of months ago and my only options were to take prednisone and an antibiotic. After about 48 hours the flare up began and lasted for 2 weeks. I was miserable. My pain meds do not touch my flare ups. And I take pretty strong ones.
It is not in my head, not about depression or anxiety, it is a real condition. My professor in physiology right now is getting her doctorate and is doing her dissertation on fibro. Her whole paper is essentially how we are treating this condition wrong and what she thinks will fix it. She has some pretty good ideas and I am anxious for her to get it published and see if she can change the world for those of us that suffer from it. But for those people who think it is a "catch all" diagnosis or it doesn't really exist except in the minds of those who have it, I challenge you to live in my shoes for a week and do what I have to do to adjust my life on a daily basis. You would be over it in a day.

It's interesting to me what you describe about being unable to tolerate touch when you have a flare. When I get sick, my skin hurts, and I have to wear as little clothing as possible because even the touch of clothing hurts. If I get a fever, which is rare, that hypersensitivity is 100x worse, and nothing helps except tincture of time.

I hope your professor is on to something.

That Guy, BSN, RN, EMT-B · Apr 6, 2014

Like just about every illness and disease out there, there are the 2 groups. The silent sufferers/people who deal with it and the people who use it as an excuse. You could insert any disease in the spot of fibro. I see both kinds come through everyday.

T-Bird78 · Apr 6, 2014

My sister has it and has no other neurological or any psychological disorders, and I hate the innuendo that it's "all in their head" just because it's not you suffering with it.

NorCal_Nurzing · Apr 6, 2014

"That Guy" has a point, those most likely to negatively judge fibromyalgia will be people who see the most vocal complainers who also frequently have the combination of scheduled meds/disability/frequent ED visits, etc that is an all too familiar tale. When I worked as a medic in urban high crime areas, I called fibro "whiner's disease" and saw it as made up. 5 years into chronic pain and now an infusion nurse in Rheum with an autoimmune disease patient population also in chronic pain, I have a better understanding of these patients. Like all chronic painers there are those who will abuse the system, their meds, providers, family and anything else they see, but we can't lump everybody into that category. Like always we need to judge situations but not patients, and fulfill our role for them. It is important not to stereotype sufferers of fibromyalgia because there is a whole group of these patients who do not fit the stereotypes being expressed by nurses here.

Anna Flaxis, BSN, RN · Apr 6, 2014

I think fibromyalgia has a strong psychological component- it has been linked to PTSD, and emotional trauma is a risk factor for developing FMS. Unfortunately, I think a lot of people hear that and take it to mean "it's all in your head", when that's not the message at all. I think it does a disservice to those afflicted with FMS to ignore the psychological component in the interest of not offending them. This would be like ignoring the psychological component of Takotsubo Cardiomyopathy.

When a person is given a diagnosis that has a strong connection to emotional and psychological factors, the clinician has an obligation to address this. Now granted, they should address it in a way that is sensitive and does not convey the message that "it's all in your head", however, this is what some people choose to hear regardless of how the subject is broached.

So yes, in essence, I do think that those who suffer from fibromyalgia syndrome really are experiencing pain and that there are physical changes to the nervous system that are responsible for their symptoms, however I do believe that psychological issues are involved and that those do need to be addressed in the treatment of this disorder.

meanmaryjean, DNP, RN · Apr 6, 2014

VERY interesting discussion- thanks for all of the insight you have shared.