How do people approach/conceptualize fibromyalgia?

[Therapist4Chnge]

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Fibromyalgia is one diagnosis that really frustrates and sometimes flummoxes me. I'm curious to hear how others approach/conceptualize it. I am *very* skeptical of it as a diagnosis and believe its appearance (if not 100% psychiatric in nature) is actually a range of other conditions that get lumped together.

Thoughts?

 

[WisNeuro]

I'm in a similar boat. I think of people who claim to have it falling into several categories

1.) Malingerers
2.) People mis-diagnosed who have something else
3.) People prone to somaticizing psychiatric distress.

At the moment I do not buy it as a distinct diagnosis itself. Several years ago I looked through the literature and it wasn't good. I'm open to changing my opinion based on good science, but so far I haven't seen much in that camp.

 

[PsyDr]

The UK workgroup, whose work has been reviewed by Frederick Wolfe (aka the lead author of the acra fibro workgroup) have indicated that suffering from childhood abuse, deprivation, trauma, and sexual abuse are general risk factors for fibro. Like 70% self report these events.

I usually cite a few of these studies, the acra treatment guidelines, and remind providers that benzos and opiates are contraindicated.

I usually tell patients that regardless of what one calls it, the treatment is the same as a psychiatric illness, and that if I had a disturbing medical diagnosis I would do anything necessary to get some relief. I also point out that many of those fakers just want opiates. Then I refuse to sign disability paperwork.

I've also rarely seen a non obese fibro patient.

 

[smalltownpsych]

The UK workgroup, whose work has been reviewed by Frederick Wolfe (aka the lead author of the acra fibro workgroup) have indicated that suffering from childhood abuse, deprivation, trauma, and sexual abuse are general risk factors for fibro. Like 70% self report these events.

I usually cite a few of these studies, the acra treatment guidelines, and remind providers that benzos and opiates are contraindicated.

I usually tell patients that regardless of what one calls it, the treatment is the same as a psychiatric illness, and that if I had a disturbing medical diagnosis I would do anything necessary to get some relief. I also point out that many of those fakers just want opiates. Then I refuse to sign disability paperwork.

I've also rarely seen a non obese fibro patient.

That last statement surprised me because most of the fibro patients that I have worked with are not obese. maybe that's cause I tend to see the more med seeking variation.

As far as treatment goes, I focus on the presenting complaint which is usually depression and anxiety and begin helping them to make connections between the external world and their internal world. If they are using benzos and opiates and not willing to begin decreasing, then they usually end up missing three appointments pretty quickly and get terminated. Benzos and opiates are way more effective than psychotherapy!

 

[smalltownpsych]

Fibromyalgia is one diagnosis that really frustrates and sometimes flummoxes me. I'm curious to hear how others approach/conceptualize it. I am *very* skeptical of it as a diagnosis and believe its appearance (if not 100% psychiatric in nature) is actually a range of other conditions that get lumped together.

Thoughts?

I'm also a bit curious why it's a problem in a neuro assessment. It seems that you would report it as a medical condition per whichever physician dx'ed it or per pt report but it would be something for us to diagnose or treat other than how we would treat other chronic pain complaints. I have done a few disability assessments where it was one of the complaints but as far as I know, there are no cognitive effects and pain is subjective and immeasurable so I can't say what their experience of that is and whether or not it would impede their ability to work, but I can report how they did on the WAIS. I tend to think that if they can make it to my office for their appointment and complete the interview and the testing, then they are probably able to work at some type of job. I just don't know who would want to hire them.

 

[psych844]

I tend to think that if they can make it to my office for their appointment and complete the interview and the testing, then they are probably able to work at some type of job. I just don't know who would want to hire them.

That is sort of weird to say. i don't know very many conditions where the person just never has a good day or better day.

 

[WisNeuro]

I'm also a bit curious why it's a problem in a neuro assessment.

Because they fail PVT/SVT's as a fairly high clip in the literature and in clinical work.

 

[AcronymAllergy]

I'm in a similar boat. I think of people who claim to have it falling into several categories

1.) Malingerers
2.) People mis-diagnosed who have something else
3.) People prone to somaticizing psychiatric distress.

At the moment I do not buy it as a distinct diagnosis itself. Several years ago I looked through the literature and it wasn't good. I'm open to changing my opinion based on good science, but so far I haven't seen much in that camp.

Mostly how I conceptualize it currently as well. There is of course research out there on chronic pain, and how the experience of such pain might result in physiological changes (e.g., nociceptor "recruitment") that perpetuates and alters the actual pain experience. Although this may then fall into a mix of the misdiagnosed and lumped-together categories. As it currently stands, it seems to just be a bit of a "catch all," perhaps primarily made up of groups 2 and 3 (either of which can also of course below to group 1).

I also like the points PSYDR made--regardless of what it's called, the treatment is X, Y, and Z. I use the same approach when making recommendations for persisting complaints related to mTBI, and honestly, I wouldn't be surprised if many of the same mechanisms that contribute to the development of fibromyalgia are shared/exhibited by those who develop post-concussion syndrome.

 

[Justanothergrad]

I'm in a similar boat. I think of people who claim to have it falling into several categories

1.) Malingerers
2.) People mis-diagnosed who have something else
3.) People prone to somaticizing psychiatric distress.

At the moment I do not buy it as a distinct diagnosis itself. Several years ago I looked through the literature and it wasn't good. I'm open to changing my opinion based on good science, but so far I haven't seen much in that camp.

+1.

I haven't seen much good science to support it as a diagnosis either. While I think 1 and 2 are options, I see the third option above being far more frequent. In my experience, folks with this diagnosis tend to somaticize much of their distress and they tend to do so in a vague and general manner.

 

[Therapist4Chnge]

I'm also a bit curious why it's a problem in a neuro assessment.

I tend to think that if they can make it to my office for their appointment and complete the interview and the testing, then they are probably able to work at some type of job. I just don't know who would want to hire them.

WisNeuro touched on one major reason it is problematic…SVT/PVT considerations. I don't have the exact numbers in front of me, but I'd estimate around 50% failure rate on one or more measures if this Dx is present.

In regard to the second part…the vast majority of my evaluations involve return to work/school considerations, so evaluation of baseline abilities and being able to speak to inconsistencies is very important. This sub-population (major medical condition + fibro) tends to have reported physical deficits that are inconsistent and/or over-reported, while also having reported cognitive deficits that are not in line w. their medical histories.

There is a HIGH bar for someone to pass for them to legitimately qualify for disability. An accurate dx is the first step in helping that patient. Education about cognition and their medical condition(s) is next, as there is often a large disconnect between what the patient believes to be true and what we know through science and research to be true. The recommendations are the last part of what I do to help get them pointed in the right direction.

 

[Therapist4Chnge]

+1.

I haven't seen much good science to support it as a diagnosis either. While I think 1 and 2 are options, I see the third option above being far more frequent. In my experience, folks with this diagnosis tend to somaticize much of their distress and they tend to do so in a vague and general manner.

This is a very astute observation. One way I have adapted to this challenge is to combine objective measures w. a semi-structured interview to tease out what is actually going on. It extends my interview time, but the data gathered are very helpful in helping better understand what is being reported. It isn't a full-blown pain eval, but it is a start to better define the reported pain, so that providers after me have a place to start.

 

[smalltownpsych]

That is sort of weird to say. i don't know very many conditions where the person just never has a good day or better day.

It sounded harsher than what I meant. I actually believe that almost all people with mental illness can work to some capacity and our system here in the US (I think you are from Canada so it is probably much different there) is pretty messed up with it's all or none thinking. Most of the people that I have seen for disability could use some help and they would also benefit from working. Our system doesn't really handle this very well. It is difficult and maybe impossible to design a system that pays people who are disabled that doesn't promote increased disability.

 

[Justanothergrad]

It sounded harsher than what I meant. I actually believe that almost all people with mental illness can work to some capacity and our system here in the US (I think you are from Canada so it is probably much different there) is pretty messed up with it's all or none thinking. Most of the people that I have seen for disability could use some help and they would also benefit from working. Our system doesn't really handle this very well. It is difficult and maybe impossible to design a system that pays people who are disabled that doesn't promote increased disability.

Entirely true of the general system for disability and for the service connection system within the VA. Having worked with both my experience has been that the VA folks tend to be more open about trying to increase their service connection. Speaking anecdotaly, I tend to see a linear decline in motivation as service connection increases above about 50%. The same is true of medicare/caid disability connections in my experience. A supervisor once told me (so disregard any part of this that is not 100%, or 50%, accurate) that a european country (Sweden I believe it was) offered a buyout option and attempted to pay you more for improvement and discontinuation of disability status. Basic behaviorism speaks to why our system in the US doesn't work.

 

[psych844]

It sounded harsher than what I meant. I actually believe that almost all people with mental illness can work to some capacity and our system here in the US (I think you are from Canada so it is probably much different there) is pretty messed up with it's all or none thinking. Most of the people that I have seen for disability could use some help and they would also benefit from working. Our system doesn't really handle this very well. It is difficult and maybe impossible to design a system that pays people who are disabled that doesn't promote increased disability.

I'm not sure of the American experience, but there are def problems and challenges in Canada when it comes to the disability system. Unfortunately i understand the system too well as I know about 4-5 people that are on it. Some of these people are close to me, but i've felt that at least in half the situations, giving the disability was not warranted and really only made the situation worse imo. The part of it that is interesting is that i've def been through more challenges than any of these people, and also got diagnosed with the same things, and from my perspective my symptoms are worse, but nevertheless I soldier on (and I've taken steps to treat my problem). I love and cherish these people, but at the same time it is very frustrating to see the excuses, rationalizations, etc when people can be productive. Many of these people tell their providers that they take meds (when they don't), they don't take the initiative to get therapy, and just refuse to at least put in the effort. Then I know others that take 5 meds, that put in the effort, and it makes me feel a bit better that not everyone is using the system.

 

[WisNeuro]

WisNeuro touched on one major reason it is problematic…SVT/PVT considerations. I don't have the exact numbers in front of me, but I'd estimate around 50% failure rate on one or more measures if this Dx is present.

Literature I've seen ranges from 30-60% in different settings. If there is an SSDI claim, it's more in that 50%+ range. I think Larrabee has some quoted numbers in the area.

 

[futureapppsy2]

I think a lot of people in this thread have an insanely naive take on how "easy" it is to get a job when you have a disability. There's a whole lot of discrimination among employers when it comes to disability. So, theoretically "could work some job somewhere" doesn't necessarily equal "can actually get a job."

 

[psych844]

I think a lot of people in this thread have an insanely naive take on how "easy" it is to get a job when you have a disability. There's a whole lot of discrimination among employers when it comes to disability. So, theoretically "could work some job somewhere" doesn't necessarily equal "can actually get a job."

Do most people even mention their disability status if they apply for jobs? I know a few of the programs here, and a lot of people are discreet about it. The problem is more obvious..lack of experience, often do to disability, but sometimes because they are lazy/lack ambition/poor family examples/poor self-esteem and confidence. The easy step is then to not do anything.

 

[psych844]

Only anecdotal evidence of course, but I have not only a lot of life experience for my age but also being surrounded by people with mental health issues. I've talked at length to many people that are on disability/that are considering it in a normal/friend setting, and I can't tell you how many peoples' issue, that are on disability, are mostly related to what I said above. There is an openness that is there when you are talking to people in a regular setting that isn't there in clinical environments.

 

[starvingstatic]

...

 

[psych844]

This is a fascinating thread. I'm temporarily located in a VERY rural area and I've heard more about fibromyalgia than I've ever heard in my whole life, and it's making a ton of sense, now.

Making sense how?

 

[starvingstatic]

...

 

[psych844]

Mental illness does not *really* exist here (and anyone who claims to have one is just a feable left-wing nut confused about their sexuality), apparently, so it makes sense that the locals would seek a "legitimate" dx from a REAL doctor.

I wish I was kidding. For whoever might be wondering, I'm only located here for now for temporary family reasons.

Oh. I totally thought you meant that since these people live in rural settings, and it may be more difficult to get work, (lack of opportunity in area, lack of resources to get employed, and maybe less skills, they are more prone to claim an illness like Fibromyalgia.

 

[smalltownpsych]

I think a lot of people in this thread have an insanely naive take on how "easy" it is to get a job when you have a disability. There's a whole lot of discrimination among employers when it comes to disability. So, theoretically "could work some job somewhere" doesn't necessarily equal "can actually get a job."

I didn't see anybody say that it would be easy to get a job for anyone and I was definitely not trying to imply that. I do believe that many of the seriously mentally ill could work and would benefit from it. Our system does not support that from what I have seen in a few different states and it often discourages it. I think this is shameful.

 

[Therapist4Chnge]

I think a lot of people in this thread have an insanely naive take on how "easy" it is to get a job when you have a disability. There's a whole lot of discrimination among employers when it comes to disability. So, theoretically "could work some job somewhere" doesn't necessarily equal "can actually get a job."

I absolutely agree that there is discrimination amongst employers when it comes to disability. I think the rub in many/most fibro cases are the patients who either feign a disability, embellish a real deficit, and/or self limit due to perceived (but not actually present) deficits. There are cases that are very legitimate and the dx of fibro is really something else (I saw a funky unknown auto-immune disorder a few years back that wreaked havoc on the person)…but many times the psychiatric component is what is driving the symptoms. The person is still in pain and in need of treatment, but it is treatable and not something that requires permanent disability.

 

[Justanothergrad]

I think a lot of people in this thread have an insanely naive take on how "easy" it is to get a job when you have a disability. There's a whole lot of discrimination among employers when it comes to disability. So, theoretically "could work some job somewhere" doesn't necessarily equal "can actually get a job."

I can only speak from experience. I think the honest distinction is not with those who are on disability with those who are not but is instead with those who are disability as they should be with those who are not and are instead exaggerating or somaticizing their symptoms. Those issues are very real and I think the rates I reflected upon are accurate depictions. It has nothing to do with those with disability and everything to do with the flawed nature of disability services. We create a system where disability is permanent and it discourages treatment. That's foolish all around.

As a case in point, how often do I see SVT's on C&Ps at the VA? very rarely. How many times have you heard vets say things like "I'm going to try and get my SC increased" while they are holding a job (both full time and part) in an effort to get 50-70%? much more often. Those two things seem very odd to me in combination. The second is the point I was making my case about.

 

[smalltownpsych]

I can only speak from experience. I think the honest distinction is not with those who are on disability with those who are not but is instead with those who are disability as they should be with those who are not and are instead exaggerating or somaticizing their symptoms. Those issues are very real and I think the rates I reflected upon are accurate depictions. It has nothing to do with those with disability and everything to do with the flawed nature of disability services. We create a system where disability is permanent and it discourages treatment. That's foolish all around.

As a case in point, how often do I see SVT's on C&Ps at the VA? very rarely. How many times have you heard vets say things like "I'm going to try and get my SC increased" while they are holding a job (both full time and part) in an effort to get 50-70%? much more often. Those two things seem very odd to me in combination. The second is the point I was making my case about.

I think you are misusing the term somaticizing as it sounds like you are implying that it is volitional. I tend to think of somaticizing as two different types: misinterpreting or being over fearful of minor physical complaints or sensations - hypochondriasis. The second type, which is usually what I am referring to regarding a pt somaticizing, I am referring to a tendency to express or experience psychological distress somatically. "How did you feel when that happened? I felt sick to my stomach." The degree of awareness of the physical and emotional interconnectedness I have heard called different things, psychological sophistication, psychologically aware, sophisticated defense mechanisms. I am more familiar with the psychodynamic concepts and terms than I am with the analogous CBT stuff.

 

[WisNeuro]

If anyone is more interested in Somatization, especially in a npsych context, may I recommend Lamberty's book if you want more evidence based information about the diagnosis and treatment of such things
Amazon product ASIN 0195328272

 

[Justanothergrad]

I think you are misusing the term somaticizing as it sounds like you are implying that it is volitional. I tend to think of somaticizing as two different types: misinterpreting or being over fearful of minor physical complaints or sensations - hypochondriasis. The second type, which is usually what I am referring to regarding a pt somaticizing, I am referring to a tendency to express or experience psychological distress somatically. "How did you feel when that happened? I felt sick to my stomach." The degree of awareness of the physical and emotional interconnectedness I have heard called different things, psychological sophistication, psychologically aware, sophisticated defense mechanisms. I am more familiar with the psychodynamic concepts and terms than I am with the analogous CBT stuff.

Not my intention to imply one way or another, although I think it happens both ways. Either way, the point was that our systems of evaluation are not reflective of the types of things that might be expected (malingering/over-reporting checks) given the longevity and setup of disability/service connection. I don't think it's all malicious. I don't think it's all purposeful, but I don't think its all unconscious either. I wouldn't expect it to be anyway.

 

[smalltownpsych]

Just clarifying that there is a distinction between malingering and somaticizing. I do agree that the system tends to reinforce both.

 

[psych844]

In regard to the second part…the vast majority of my evaluations involve return to work/school considerations, so evaluation of baseline abilities and being able to speak to inconsistencies is very important. This sub-population (major medical condition + fibro) tends to have reported physical deficits that are inconsistent and/or over-reported, while also having reported cognitive deficits that are not in line w. their medical histories.

.

can you give some examples here?

 

[psych844]

another q..does a person need to have cognitive deficits with to get a fibro diagnosis ?

 

[Therapist4Chnge]

another q..does a person need to have cognitive deficits with to get a fibro diagnosis ?

No.

The reason cog was mentioned was bc the pt wouldn't get to me unless there were cog concerns (as I only take referrals for neuro evals and mostly stick to brain injury). The fibrosis referrals I see all have a different primary Dx, usually multiple med conditions trying to go back to work. Most of my fibro referrals are PCS/unresolved concussion cases, which isn't surprising given the large psych considerations for both DX's.

 

[Loansforlife]

Mostly how I conceptualize it currently as well. There is of course research out there on chronic pain, and how the experience of such pain might result in physiological changes (e.g., nociceptor "recruitment") that perpetuates and alters the actual pain experience. Although this may then fall into a mix of the misdiagnosed and lumped-together categories. As it currently stands, it seems to just be a bit of a "catch all," perhaps primarily made up of groups 2 and 3 (either of which can also of course below to group 1).

I also like the points PSYDR made--regardless of what it's called, the treatment is X, Y, and Z. I use the same approach when making recommendations for persisting complaints related to mTBI, and honestly, I wouldn't be surprised if many of the same mechanisms that contribute to the development of fibromyalgia are shared/exhibited by those who develop post-concussion syndrome.

Yeah, all of this. I would say 95% of my fibro patients self report early trauma/abuse (mostly sexual). I do believe in the possibility of an regulation in nociceptor pain developed from early trauma experiences (there is some good research in pain/illness in childhood etc), which in turn leads to greater somatisizing of pain in some patients. Of course this does not mean the pain is not "real" for them either, mostly that they lack the coping skills to deal with it, or express stress and psychological pain in a physical way.

Anecdotally, most of my fibro patients are underweight as opposed to overweight. I have seen some people improve, with CBT, biofeedback, and increasing their sense of control over "flare-ups". I like recommending the book "From fatigued to fantastic" as it has a lot of empowering self help advise that is essentially good self care.

 

[Shooter]

Fibromyalgia is one diagnosis that really frustrates and sometimes flummoxes me. I'm curious to hear how others approach/conceptualize it. I am *very* skeptical of it as a diagnosis and believe its appearance (if not 100% psychiatric in nature) is actually a range of other conditions that get lumped together.

Thoughts?

Somatic Symptom Disorder

 

[WisNeuro]

For some, yes, I would say SSD would fit, but there is some objective evidence of neuropathies in a significant percentage of patients. I'm willing to say that we need to wait for the science to come in before ruling the entire category as SSD. But am willing to say that we can't rely on solely self report to determine disability and diagnosis, considering high rates of PVT/SVT failure.