What do you think of fibromyalgia?

[Emergent]

What do my colleagues here think of fibromyalgia? It's sufferers seem to mainly women. I'm very skeptical about it. Is it a psychological disorder? I don't mean to dis anyone here, please forgive me, but every patient I've ever taken care of with this disorder strikes me as neurotic. Since there is no actual lab test the definitively confirms the diagnosis, I remain suspicious regarding this disorder.

What do you know about this condition?

[NurseGirl525, ASN, RN]

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.

I respectfully disagree with this. I was 15 when first diagnosed. There was no emotional trauma, PTSD, depression, or anything at the time. I starting waking up in the morning with severe pain and when I would lay down at night my muscles hurt so badly I could hardly take laying down. Back then it was still called fibrositis so they gave you a TENS machine and some NSAIDs to treat. Literally did nothing for me. I then went into remission for a few years and it came back with a vengence in my early twenties. I was given another fibro diagnosis. Again no depression, no PTSD, none of that. I now have depression stemming from the pain. Many people who have this are depressed because they are in pain all of the time and there is no way to treat it. It's like a dark hole you can't get out of. You want to be normal like everyone else. You wish there was a test to prove you have it and the doctor could give you a magic pill that will fix everything. You wish so much it was anything but this. Now that we have it for the most part under control I am off of almost all anxiety and depression meds. I went from 3 to now being on one.

So please understand, this is not something that can be fixed by thinking positively or getting happy. That is something my ex would say to me and totally tick me off. Until someone famous gets fibro and draws attention to it, the same thought process will still exist.

[Anna Flaxis, BSN, RN]

Regardless of your personal experience (and keep in mind there are *always* outliers, or exceptions to the rule), there does exist a strong link between PTSD and Fibromyalgia Syndrome. Whether it is a causal relationship is unclear, but for the majority of people with both diagnoses, the PTSD came before the FMS. A smaller percentage had the FMS first, and a tiny percentage acquired both within a close time period. The proportion of people with both PTSD and FMS is significantly larger than the proportion of people in the general population with PTSD only.

This may not reflect your own personal experience, but it is significant enough that I think for clinicians to ignore it for fear of offending people with FMS does them a disservice.

On a personal level, I do believe in a mind-body connection. I believe that what happens in your mind can effect actual chemical and physical processes in the body. We know it's true that severe emotional trauma can cause actual physical changes in your myocardium in the form of Takotsubo Cardiomyopathy. We know that chronic stress can cause elevated cortisol levels in your body, increasing your cardiovascular risks. Why then, is it unreasonable to think that there might be a mind-body link when it comes to Fibromyalgia given the significant correlations noted above?

So please understand, this is not something that can be fixed by thinking positively or getting happy.

I never proposed that it was. In fact, this response simply serves to underscore what I did say in my post, which is that some people will hear "it's all in your head" simply at the suggestion of a psychological component, when that is not what is meant at all. Not only that, but it is a gross misperception of what cognitive behavioral therapy is really all about.

[Emergent, RN]

Thank you all for your imput. I'll have a more open mind and heart after reading these many responses here.

[sissiesmama, ASN, RN]

The best alternative that I have found is yoga and focused breathing.

Yoga has been a big help to me too.

Anne

[Pangea Reunited, ASN, RN]

The first time I heard the word was from an MD while I was still in nursing school. It was described as being synonymous with "crazy" and that's how I've thought of it ever since.

Some of your posts have really made me think.

[Anna Flaxis, BSN, RN]

Yoga has been a big help to me too.

Anne

Yoga is wonderful! I'd recommend it to anyone.

[Dranger]

I think its psychosomatic to be honest, a lot like conversion disorder. I believe the pain is there but delves from other psych issues because all of the fibro patients I have ever met were of the same "feather" it seemed.

[HikingEDRN, BSN, RN]

Thank you all for your imput. I'll have a more open mind and heart after reading these many responses here.

Me too.

[trishmsn]

From what I have seen, read, and expereinced, fibro may not be "all in the head" but it is certainly linked to the BRAIN and the rest of the CNS/PNS. What would be neutral or mildly noxious stimuli to most people seems to cause an over-reaction to pain in those with fibro. It is analagous to allergies, where the body takes a perfectly harmless substance like peanuts and turns against it like it was a huge and deadly pathogen/allergen.

I have seen it most frequently linked to females with multiple other "issues", both psychological and somatic. The chicken-vs-egg debate could go on forever in most of these cases.

Ironically, I meet the diagnostic standards for fibro, but since the diagnosis would not change my life at all, it is not something I choose to pursue. I have multiple microfractures of the cervical and lumbar spine with nerve compression, and take routine pain medication to allow me to continue to work full time. I do not know the answers, but suspect that there are a few fibro patients who have an autoimmune disease, others who are neurologically hypersensitive to mild aches and pains, and a bunch who use the diagnosis for secondary gain.

[0.adamantite]

I believe that it is a real diagnosis, perhaps psychosomatic like another poster mentioned. I remember reading that fibromyalgia and depression go hand in hand.

I also believe it is a diagnosis that is abused a lot by patients who are attention seeking etc.

[gail323]

Well, I'm coming at this from two separate ends of the spectrum. I am a nurse, retired now because of the cancer treatment that I received, but worked for years with fibromyalgia. Because I am retired, I do not usually end up putting my body into the work environment that would trigger the severe pain. General achiness is still there certainly but I take nothing more than aleve and tylenol to get through my day. I am not depressed - not now, not ever, even during the worst of the chemo treatments. I am a very upbeat, positive thinking individual...

That being said, fibro is real. And it doesn't happen just to people as a PTSD component - nothing would have triggered it in my life. Not saying that it doesn't happen to some. I was never a drug seeker - the number of times I have been on pain medication other than the OTC stuff were related to surgery or the side effects of chemo. I think part of the problem is that those of us in health care rarely see someone diagnosed with fibro who is attempting to live the best life they can. In health care, we frequently see those that have tried to cope and ended up seeing doctor after doctor trying to figure out what is wrong with them... and looking for that magic pill that will allow them to get back to some semblance of a normal life... and they give up after a while, and look for anything that will take the pain away. Discouraging - yep. Depressing - most certainly when there way of life is controlled by the amount of pain they are having.

Knowing that I have something "more physical" planned for one day means that I will usually take it easier the day or two before. Or if I happen to end up being more physically active one day - helping my husband move furniture or some other such thing - then he knows that the next couple days will involve me trying to get the pain under control. And I know others that deal with life the same way - women and men who were energetic, athletic individuals who have had to give up some of the activities that they dearly loved when they were diagnosed. I really hope that some day someone will figure out why we seem to be so hypersensitive to painful stimuli and come up with a game plan... but until then, can I ask my fellow nurses to just please be sensitive. Not all people who deal with pain are drug seekers. Most of the ones that I know would love to be able to get back to their before fibro activity level. Yes, some seem to thrive on the attention they get, but I don't know that it would be any different with any other "invisible" disease. And if the only time you get attention is when you are complaining... well, if you are stuck in your house because of pain and no one pays any attention to you, you can see how the cycle will just keep repeating itself.

This got much longer than I planned but I'm not going to go back and edit it. Maybe there is something in this mess that will help someone else. Pain is subjective. It isn't something that you can measure and we have to count on what our patients tell us and then try to bring them back to as close to normal as we can. That's our job...

[SleeepyRN]

I think depression and anxiety are real illnesses that can cause very real physical symptoms, such as pain, fatigue, heart palpitations, stomach aches, etc. No one wants to acknowledge that it's mental illness causing these symptoms because there's still a lot of stigma there. It's easier for physicians too, to give it a diagnosis like fibromyalgia, chronic fatigue, or IBS and throw drugs at it that won't fix the true issue.

I also see this diagnosis used when the symptoms haven't truly been worked up. Especially in women. I had a patient diagnosed with fibromyalgia when multiple myeloma was causing her bone pain.

I find that depression many times builds AFTER the symptoms started. If I had fibromyalgia and was in that pain, AND knew people thought I was faking...I'd be depressed too. I have my own condition that is similar that I'll comment on shortly.