Is This What It’s Come To?: Fibromyalgia Close To Being Labeled As Mental Disorder

nekMy mind hurts just thinking about this. Fibromyalgia, as well as a whole slew of other chronic illnesses are at risk to be categorized as “mental disorders.”

The fifth edition of the DSM, or Diagnostic and Statistical Manual of Mental Disorders is set to release in May 2013. It is published by the American Psychiatric Association and in it contains the diagnostic codes often used by doctors for mental illness. This time around they have included a brand new category of mental disorder: Somatic Symptom Disorder. According to the criteria outlined, a person may be diagnosed with SSD if for six or more months they have been affected by symptoms that are “distressing or disruptive to their daily life”, and if they have reacted in one of the following ways:

  • Disproportionate thoughts about the seriousness of their symptom(s).
  • A high level of anxiety about their symptoms or health.
  • Devoting excessive time and energy to their symptoms or health concerns.

Okay, so personally, this is really sad. I’ve been fighting long and hard for the past two years to try and get an answer as to why I’m having such severe pelvic pain. The pain more then affects my ability to live a normal life, and yes, I have gotten anxious about the pain. In reality, who doesn’t get anxious when they don’t know what’s going on in their body? That certainly doesn’t make it a mental disorder. Now I fear that instead of getting the help I need, I’m going to be tossed aside, simply classified as having a mental disorder.

To me, and hey, maybe I’m wrong (after all, I’m not a medical professional), having one of the above reactions seems natural in a situation where your body is going haywire in one way or another and you can’t figure out why. This labeling puts every chronically ill person in danger of being labeled as having a mental disorder. In the sad and sorry society that we live in today, once you’re labeled with a diagnosis like that, not a lot of people are going to take you seriously. It’s even possible that insurance companies may begin refusing necessary testing simply because of that diagnosis. We are going to be in real trouble, here.

This is going to put the people of the public in a real predicament. For instance, if a doctor you are seeing thinks that you may be paying just a little too much attention to your health, and he diagnoses you with SSD, then what happens? What if there is something that is seriously wrong? What if nobody takes you seriously anymore? What is going to happen at that point?

One of the people who have been highly opposed to the DSM’s decision to include SSD is Dr. Allen Frances, MD. Dr. Frances was head of the DSM 4 task force. According to his blog he says the following; “I hoped to be able to influence the DSM 5 work group to correct this in two ways: 1) by suggesting improvements in the wording of the SSD criteria set that would reduce mislabeling; and 2) by letting them know how much opposition they would face from concerned professionals and an outraged public if DSM 5 failed to slam on the brakes while there was still time.”

It was a matter of changing a few simple little words, and the DSM task force refused. In Dr. Frances’ words, “The DSM 5 has failed us.” While it isn’t aiming specifically at those with Fibromyalgia, CFS, etc., this new DSM 5 categorization will make those with these illnesses “particularly vulnerable to a diagnoses of SSD.”

Is There Anything I Can Do?

Sadly, at this point, the DSM refuses to correct “Somatic Symptom Disorder”. However, Dr. Frances has written a few pieces on this horrendous failure of the DSM. It has received a huge amount of feedback, so what I encourage you to do is to head over to this article and to leave a comment. On a local level, you could also get in touch with your elected officials to tell them how you feel about this new inclusion of SSD in the DSM.

 

To me personally, this is both incredible and awful. It’s incredible because you would think that in this day and age, where we have all this technology available to us that things like this wouldn’t be happening. Unfortunately, behind that technology, we have a bunch of incompetent medical professionals only looking after the welfare of their paycheck.

Links

Toni Bernhard’s Article: Physical Illnesses May Soon Be Labeled Mental Disorders

Dr. Allen Frances’ Article: Mislabeling Medical Illness as Mental Disorder

Dr. Frances’ Article: DSM 5 Refuses to Correct Somatic Symptom Disorder

 

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23 comments

  1. This is very scary…i was just diagnosed last year although Ive had symptoms for a couple years and just didnt react til all the pain and memory issues became worse. I go to the Dr often because my pain and symptoms are getting worse and there are times where I can barely be mobile. Now I dont see how they would consider that mental. Please dont make it harder for all of us than it already is. We are in enough pain as it is.

    1. I have been suffering since 2000 and progressive gotten worse, do not make this harder for us or for anyone who suffers from a chronic illness and an invisible one. This is far from mental it is a physical disability that in time makes us mental. I feel the incredible amount of full body pain every day and days I feel mental but fybromyalgia is not a mental but a physical disability. When not feeling well we all can become mental….please acknowledge this for what it is and educate correctly. Thank you. There is so much more that needs to be said on this topic.

  2. This man does not know what he is talking about. I have had Fibromyalgia for 16 years now. It is an extremely painful condition. It has been around since 1753. At that time, because no one knew what it was, it was deemed a “mental condition” because it does affect the brain. However, this disorder is real. It causes a person’s immune system to weaken and many other illnesses occur. I am such a person. I now have 15 illnesses because I got Fibromyalgia. Thank God, I have an excellent Rheumatologist, who understands this illness. Dr. Frances does not understand that with the proper diet, the proper medications, and the right physicians, this illness can be brought under control. Mine was. It took a long time to do this, but it did happen. This does not mean I do not experience pain from time to time. I still experience severe head pain and fatigue because no physician can do anything about that.

    To put this illness or others like it as a “mental illness,” because Dr. Frances and others like him do not understand it or know how to treat it is wrong. I have run into many people just like him in 16 years, This is not a flavor of the month or a made up illness. It is real. People are suffering immensely. You never know how you will wake up in the morning. Just this morning, I woke up with myofascial pain. That is knots in your muscles. I have that all over my body. Sometimes it bothers me, & sometimes it does not. My insurance does not cover sessions with a physician working on the knots to take them out. That costs over $100 an hour. And I cannot afford it.

    Labeling an illness as a mental illness when you cannot or will not treat it, because you do not know how, is like saying someone with Cancer is mentally ill because you do not know the first thing about Cancer. Would you do that? Of course not. So, do not do it to us.

    Thank you,.

    Barbaraanne Breithaupt, IJCTC, CPRW, CO

  3. This is not a mental disorder. If it were, how would we have good days and bad days with no real reason. Whe we wake up, we are not having thoughts. As a matter of fact i can’t even think when i wake up and go to the bathroom. that is when i know if i am going to be stiff and sore and have a bad paid day or if i am going to be reletively ok that day. Really? this is preposterous.

  4. Yes there are days when I can not get out of bed because of the in my hips, thighs, legsxand feet…nothing mental about that…

  5. Dont believe everything you read! This man has NO Experience of the illness….just because its invisible, does’nt mean to say in all in our bloody head’s! Absolute bullshit!

  6. This is so disturbing to me, that a whole team of people have come up with something so potentially damaginig to such a large group of people. I have had fibromyalgia for almost 20 years, but have only been diagnosed for about 6. In all of that time undiagnosed, I never stopped looking for an answer as to what was causing all of my symptoms. Was that mental? I don’t think so. The pain is REAL. I have it right this minute in my whole body and it is excrutiating, is that all in my head? This really scares me, you guys.

  7. I used to say I would never wish fiberomyalgia on anyone….but the doctors that think this is a mental disorder…I wish they could feel what we feel. I was diagnosed at the ripe old age of 13… and I’m 28 now and just barely finding a doctorto help me and understand my struggle. Its horrible. We have enough to deal with, let alone a mental illness diagnosis.

  8. I accept I will be going against the grain here, but what is it that makes people think that because they are classed as having a mental disorder, that they will be tossed on some scrap heap and not treated? I also haven’t seen that this Somatic Symptom Disorder will replace Fibromyalgia. I don’t see that it is saying our pain isn’t real (and by the way the pain of mental illness is real too) just that they are going to address an over-anxiety about symptoms. Now how they define that is the real question, but it doesn’t take away the fibro. Personally I’m inclined to think there is a lot of scare mongering going on right now about this and other parts of DSM-V. I certainly don’t think it’s perfect but it seems to be the stigma of mental illness that people are so afriad of. We should fight that.

  9. My bride has fibro and has for nearly 10 years, and she has tried all kinds of things. Living with her and knowing the woman of character she is, I would support anyone who said that fibro is real pain. For clarity, I’m in residence in the mental health field, pursuing licensure, so I’m new to the field relatively. This will affect our family on two different fronts: legal and ethical for me as I will be bound in some ways by the DSM V; and medically and financially for us as my bride is a patient with diagnosed fibro. If it is of any comfort, the DSM covers tons of things and it is open to the practicing professional’s interpretation of the criteria listed and met by the patient/client. Mental illness doesn’t necessarily mean that people will be cast aside or looked down on by the majority of society or the health care field.

    There’s a lot to be taken into consideration, so I would encourage everyone not to be too overwhelmed and alarmed just yet. This can go in several different directions, whether it is in the DSM or not. Mental illness does not mean “crazy.” It means there is something affecting or restricting the full intended operation of the brain in a completely healthy state. Autism spectrum is in there as are developmental disorders and addictions. So while the DSM isn’t perfect, being an individual whose disorder is listed or categorized in the DSM doesn’t necessarily mean that you will be Quasimoto. Let’s see where this goes and respond as things unfold, albeit proactively and boldly.

    1. Mr Fantastic, my husband too, was trained to be a licensed professional therapist, knowing full well what the DSM attempts to do with diagnosis and classification of mental health. The problem that we see is this: 1. The board members who decide what classification conditions should be listed primarily seems to be based on the pharmaceutical and insurance payment, rarely on conditions themselves. Case in point: the autism spectrum listing, which includes schizophrenia as part of its continuum. For example, We noticed that Dyslexia was merged into ADHD and ADD as a DSM, leaving Dyslexia to be now a “non condition” by reason of lack of insurance funding and coverage for diagnosis and treatment. In the end, this does NOT solve the problem of the patient who has previously been diagnosed with Dyslexia as a condition, but demands that they now be treated as having ADHD or ADD, which they certainly may not be their true condition, receiving treatments that were never intended for their cognitive problems (I suspect that Ritalin given to a Dyslexic will be damaging, but we are not hearing about this because “Dyslexia” no longer exists….Get it?

      So now various conditions ranging from cancer pain to postpartum depression, Fibromyalgia to MS, as well as ALL other Autoimmune conditions, plus CFIDS and AIDS are all considered under the umbrella of “somatic syndrome disorders”. This will certainly impact patents ability to be taken seriously medically. Since most doctors are NOT diagnostically trained in DSM to “interpret” this ‘basket’ will thrust their patients over to the mental health clinicians as “their problem”. The domino effect of this, not only creates prejudice, but worse clients will fail to see the level of care they need (after all, every ache and pain will be perceived as “their somatic condition” , failing to treat things like intercostal pain that could be interpreted as “just their fibro” in truth could be heart disease!

      Already in Oregon we have seen that this DSM diagnosis will have caused patients to be demanded full psychiatric and psychological evals, to receive ‘care’ (or should we say, SSRIs and SNRIs as the ONLY course of treatment for their conditions) of any sort by a pain specialist or any other procedure for pain.

      In the end this will severely impact patients with true medical need, will inhibit further research into autoimmune conditions, and WHY they’re increasing in numbers of population having them, their possible genetic involvement, and stopping true cures, rather than “bandaids” that most patients have found SSRIs and SNRIs to be for their pain; it only seems to work with less than 30% of the population affected experience true relief with these medications, often resulting in having to switch up every 90 days off their meds, or med increases. Worse still as I have already pointed out, MD’s, DO’s, etc, are now having to turn patient’s over to specialists for DSM and other psychological evals, before they can even treat these patient’s for simple or complex needs. THIS was never then intention of the DSM.

      Since our conditions now are being interpreted by a psychological determination rather than a physical determination it changes the landscape of how doctors will treat their patients, what medications they will receive as well as how they will be emotionally seen, as if having these conditions in and of itself wasn’t bad enough, now an additional stigma! Plus, I don’t know about anyone else, but since when did the pharmaceutical industry and insurance board have our best interest in mind anyway? This act sets us back 150 years. thank you.

  10. Barbaraanne and Michelle,

    I am co-author of Dr Frances’ two blogs on his concerns for the new DSM-5 category – Somatic Symptom Disorder (SSD).

    Dr Frances very strongly opposes this new category.

    I can only suggest that you read both his blog posts and a third post that will be published in a couple of week’s time – you have misunderstood.

    For DSM-5, an additional diagnosis of SSD can be applied to patients with:

    1] A diagnosed general medical disease or condition, eg cancer, heart disease, diabetes;
    2] One of the so called “functional somatic syndromes”, under which umbrella CFS, IBS, Fibromyalgia, Chronic Lyme disease and a number of others are often included;
    3] One or more somatic symptom for which no underlying etiology has been established.
    4] A psychiatric disorder.

    After Christmas, Dr Frances discussed his concerns for the implications for all patient groups for this new category with the SSD Work Group chair. He also raised his concerns with key members of the APA Board of Trustees, the DSM-5 Task Force chairs and all members of the SSD Work Group.

    He also included his suggestions for how the criteria might be tightened up.

    The SSD category was one of the new categories tested in the DSM-5 Field Trials.

    The three study groups for the [C]SSD field trials were given as:

    “Healthy” control group [7% met the criteria for coding with an additional diagnosis of SSD when one from the B type criteria was required]

    “Diagnosed illness” study group (cancer and severe coronary disease) [15% met the criteria for coding with an additional diagnosis of SSD when one from the B type was required]

    “Functional somatic” study group (irritable bowel and chronic widespread pain) [26% met the criteria for coding with an additional diagnosis of SSD when one from the B type was required]

    Families with children with chronic medical illness will also be vulnerable, as the proposals, as they stood at the third draft, allow for assigning a diagnosis of “SSD” to parents perceived as being “over-involved” in their child’s illness and symptomatology or encouraging the maintenance of “sick role behavior.”

    I hope this helps to clarify.

  11. The SSD Work Group is not proposing to classify Chronic fatigue syndrome, Irritable bowel syndrome, or Fibromyalgia within the DSM-5 ‘Somatic Symptom Disorders’ section.

    But these patients and others with conditions like chronic Lyme disease, interstitial cystitis, Gulf War illness and chemical injury may be particularly vulnerable to misdiagnosis with a DSM-5 mental health disorder or to receiving an additional diagnosis of ‘SSD.’

    In the DSM-5 field trials, more than one in four of the Irritable bowel syndrome and chronic widespread pain (aka Fibromyalgia) patients who comprised the ‘functional somatic’ study group met the criteria for an additional diagnosis of ‘Somatic Symptom Disorder.’

    On May 26, I published a commentary on my site at this post:

    “Somatic Symptom Disorder criteria could capture millions more under mental health diagnosis” http://wp.me/pKrrB-29B

    From SSD Work Group documentation:

    “…[The SSD Work Group’s] framework will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome…”

    “…These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met…”

    Within my commentary, I listed the following:

    “Implications for a diagnosis of SSD for all patient populations

    Incautious, inept application of criteria resulting in a “bolt-on” psychiatric diagnosis of a “Somatic Symptom Disorder” could have far-reaching implications for all patient populations:

    • Application of highly subjective and difficult to measure criteria could potentially result in misdiagnosis with a mental health disorder, misapplication of an additional diagnosis of a mental health disorder or missed diagnoses through dismissal and failure to investigate new or worsening somatic symptoms.

    • Patients with cancer and life threatening diseases may be reluctant to report new symptoms that might be early indicators of recurrence, metastasis or secondary disease for fear of attracting a diagnosis of “SSD” or of being labelled as “catastrophisers.”

    • Application of an additional diagnosis of Somatic Symptom Disorder may have implications for the types of medical investigations, tests and treatments that clinicians are prepared to consider and which insurers are prepared to fund.

    • Application of an additional diagnosis of Somatic Symptom Disorder may impact payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out. It may negatively influence the perceptions of agencies involved with the assessment and provision of social care, disability adaptations, education and workplace accommodations.

    • Patients prescribed psychotropic drugs for perceived unreasonable levels of “illness worry” or “excessive preoccupation with symptoms” may be placed at risk of iatrogenic disease or subjected to inappropriate behavioural therapies.

    • For multi-system diseases like Multiple Sclerosis, Behçet’s syndrome or Systemic lupus it can take several years before a diagnosis is arrived at. In the meantime, patients with chronic, multiple somatic symptoms who are still waiting for a diagnosis would be vulnerable.

    • The burden of the DSM-5 changes will fall particularly heavily upon women who are more likely to be casually dismissed when presenting with physical symptoms and more likely to receive inappropriate antidepressants and anti anxiety medications for them.

    • Proposals allow for the application of a diagnosis of Somatic Symptom Disorder where a parent is considered excessively concerned with a child’s symptoms [3]. Families caring for children with any chronic illness may be placed at increased risk of wrongful accusation of “over-involvement” with a child’s symptomatology.

    Where a parent is perceived as encouraging maintenance of “sick role behaviour” in a child, this may provoke social services investigation or court intervention for removal of a sick child out of the home environment and into foster care or enforced in-patient “rehabilitation.” This is already happening in families with a child or young person with chronic illness, notably with Chronic fatigue syndrome or ME. It may happen more frequently with a diagnosis of a chronic childhood illness + SSD.”

    Dr Frances is professor emeritus at Duke and had led the Task Force that developed the current edition of DSM (DSM-IV) and has been a very vocal critic of many of the new categories for DSM-5 – once again – he very strongly opposes the ‘SSD” category.

    The first in Dr Frances’ series of posts on the ‘SSD’ category has attracted over 20,000 hits and more than 470 comments. If you haven’t already done so, please leave a comment on one or both of Dr Frances’ blogs.

  12. Further blog coverage of the SSD criteria issue:

    IBS Impact

    http://ibsimpact.wordpress.com/2012/12/17/proposed-dsm-5-criteria-may-unfairly-label-physical-conditions-as-psychological-disorders/

    “Proposed DSM-5 Criteria May Unfairly Label Physical Conditions as Psychological Disorders”

    “Recently in the IBS and chronic illness community, several professionals and self-advocates have begun expressing concern about proposed changes in the Diagnostic and Statistical Manual for Mental Disorders, commonly known as the DSM…The DSM is revised periodically and the 5th edition is expected to be released in 2013. While there are many controversial proposed changes, one that has received relatively little attention in the mainstream media is particularly alarming in its potential implications for people with chronic illnesses, especially ones that are still scientifically poorly understood, like irritable bowel syndrome or commonly overlapping conditions like fibromyalgia, chronic fatigue syndrome and interstitial cystitis among others…”

    —————–

    http://opbmed.blogspot.co.uk/2012/12/moving-in-wrong-direction.html

    December 13, 2012

    “Moving in the Wrong Direction”

    Dr Tiffany Taft, Ph.D., Northwestern University

    “…Rather than repeating what’s in store in DSM 5, this article ( http://wp.me/pKrrB-29B ) provides an excellent summary of the proposed changes. It’s really worth taking the time to read, whether you have diabetes, irritable bowel syndrome, lupus, or fibromyalgia. The bottom line is, regardless of the etiology of your chronic illness you are a candidate for the Somatic Symptom Disorder (SDD) diagnosis. If you’re a parent caregiver, your reactions to your child’s illness may be deemed pathological as well…”

  13. We have got Fibromyalgia Syndrome because we all have a gene called HLA B27. If this Dr. googles this he will see I am right.

  14. I have had fibromyalgia for 23 years (caused by a traumatic neck injury from which I still suffer from today, despite being told by WCB doctors that I am 100% healed), but it took almost 10 years and many doctors to get this diagnosis. As with probably everybody here, the doctors most common first line of defense when it comes to the initial symptoms of fibromyalgia is the dispensing of psychotic medicines to deal with your ‘depression’, or they tell you that “you have a full time job, 3 young children and a husband to look after, so of course you feel like this, what else would you expect?” And then they tell you that because all of your test results came back ‘normal’ then it must all be in your head, or that you are lazy and just don’t want to go to work, you are just looking for sympathy and attention, etc. There are still far too many doctors who do not think of these types of diseases as ‘real’ or ‘legitimate’, and this type of labeling is not meant to be supportive to our cause, no matter what anyone says to the contrary.

    Perhaps one of the reasons for this new diagnostic paradigm is not medical, but rather legal, as more people with these ‘vague’ types of illnesses are seeking and winning compensation and disability benefits through the courts. Is it possible that this is how the medical community has found a way to prevent or lessen the impact of this diagnosis for the legal system and also the government vis a vis disability, veteran’s benefits, the health care system and others? Could this be a way for the medical community to discourage patient self-care through self-education and alternative medicine/therapy? Could this be a way for the pharmaceutical industry to push more of it’s psychotropic treatments on unsuspecting ‘customers’?

    Because there are so many factions that stand to benefit from the inclusion of this controversial ‘condition’, change is not likely to happen. The only way to ‘beat the system’ is through self-care, self-education and self-management through alternative medicine, therapies, and using food and nutrition as agents of healing. Controversial, I know, but in the end it allows us as patients to have control of our lives once again and not be dependant on others for our care who may not have our best interests at heart.

  15. Stigma, stigma stigma, so much of it is attached to fibromyalgia.
    It is not a mental illness. Yes it can cause depression caused by pain. Enough is enough, there a certain groups of so called doctors who are putting out bull shit. Read it, then have a good laugh at it.
    You should not take this crap that you read as bible.
    You will just make your self stressed and make your pain worse.
    These people who write this crap, make us people with FMS look like liars and some sort of freaks of nature
    Fibromyalgia pain has been proven as real, by FMRI scans.
    So it has been proven that it is not all in our heads.
    Until real real medical diagnostic proof is available I would not worry about these people putting out this SHIT. If there opinions where so right and correct they would be millionaires. The same as anybody who finds a cure, they would become millionaires over night.
    I know my pain is a real physical entity. I know that I am not psychologically impaired in any way.

    They need to give up on trying to suggest mental disorders are responsible for fibromyalgia. I think we are passed all that crap a long time ago, we are now in 2013, not 1990. We know more now than we ever did, but I am afraid saying it is psychological is just so out dated its almost Neanderthal.

    Good luck……

  16. I agree. There is too much stigma. This is not right. If your physically sick that doesn’t make you a mental case! Until more people become educated that it is a real physical condition there will be crackpots out there taking advantage of it. I also suffer from Chronic Migraine Disease as well, and you talk about Stigma-whoa buddy there’s a lot of misinformation about Migraine Disease-not thank you I cannot just take an Excedrin and “get over it” or “it’s all in your head” your darn right it’s all in my head, flipping jackhammer and the whole construction crew trying to drill their way out!! Not to mention the forgetfulness, clumsiness, vertigo, visual disorder, aversion to strong smells, loud noise or bright lights. Living in constant pain is no Merry go Round ride and all of us would like to get off this nightmare roller coaster-they think this is fun or imagined! Bah! I’d love for them to have to deal with FM/CFS and Migraines all at once. Now there is a picnic in hell!

  17. We need now to own the DSM-V, being that we had the DSM-IV. My husband who took the classes for LPCC has one thing to say about this so called SSD: anyone heard of conversion disorder? Anyone want a good definition look at M*A*S*H, Dr Sidney Freedman; ” the best thing to do is to get ’em back on the front as fast as possible. ” This is about what insurance companies will reimburse and at what rate, not about path of therapy treatment. PS I have Cerebral Palsy, Fibromyalgia and Dyslexia…Dyslexia was converted to ADHD (even thought I don’t fit the parameters) and now I am SSD, right??? Waiting to hear that we are now considering folks in wheelchairs as ‘somatic’ and CP as ‘malingering’. Yes, we will be buying the DSM-V for our own protection of our disabilities (he also has CP).

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