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SSD-Christopher Bass & MaxHenderson: Fibromyalgia: unhelpful diagnosis for both patients and doctors

Messages
13,774
C Bass wrote a piece for Pulse that was commented on here: http://forums.phoenixrising.me/inde...-archive-somatoform-disorders-in-pulse.14253/

Henderson did a piece on CFS and personality disorder that had no control group with physical health problems.

This is their new comment on the BMJ promoting SSD.


Fibromyalgia: an unhelpful diagnosis for both patients and doctors
6 March 2014
The review by Rahman et al on fibromyalgia [1] describes the disorder as if it is a disease entity characterised by, for example, a certain number of tender points. This is misleading, as tender point counts merely reflect levels of distress. [2] Whilst, indeed because, we recognise the difficulties encountered by this patient group, we suggest that the term fibromyalgia be abandoned for the following reasons:

1] Fibromyalgia is a dimensional or “continuum disorder” and not a “disease” [3]

2] FM is strongly associated with other non-musculoskeletal complaints and emotional distress, which are at least as disabling as the somatic symptoms; it is more appropriately described in terms of “polysymptomatic distress”[3]

3] In our clinical experience assigning a person a label of FM has a negative and disempowering effect on the patient and many of their doctors; once a person ascribes a complaint to, for example, “fibrofog” it suggests that it is external and unalterable. This may transform a person with distress into “a patient with fibromyalgia.”

4] Because FM overlaps with numerous other disorders with medically unexplained symptoms such as irritable bowel syndrome and chronic fatigue syndrome [3] it is more appropriate to treat them within the same specialised service in the general hospital. Experience in Europe suggests that such specialised units for patients with these disorders can be established with multidisciplinary teams

Polysymptomatic distress has been recognised as a somatoform disorder, specifically as a somatic symptom disorder or SSD. [4] Of people with fibromyalgia in the general population 40% satisfy criteria for somatic symptom disorder, prompting Wolfe to remark that – “the idea that fibromyalgia is primarily a somatic symptom disorder is well accepted in the pain and psychological literature, but not in the rheumatology, where the dominant idea is central sensitisation”. [3] People with these diverse complaints present to doctors in all branches of medicine, in particular in primary care. A greater awareness of the psychosocial determinants of musculoskeletal complaints would benefit all doctors by helping them to identify these people earlier in their “patient journey” and prevent the medicalisation and potential for iatrogenic harm that accompanies a diagnosis of fibromyalgia. [5]

[1] Rahman A, Underwood M, Carnes D. Fibromyalgia Br Med J 2014;] 24th February]

[2] McBeth J, MacFarlane G, Benjamin S, Morris S, Silman A. The association between tender points, psychological distress, and adverse childhood experiences. Arthitis Rheum 1999; 42:1397-1404.

[3] Wolfe F, Brahler E, Hinz A, Hauser W. Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: results from a survey of the general population. Arthritis Care Res 2013; 65: 777-785.

[4] Somatic symptom and related disorders. In: Diagnostic and Statistical Manual of Mental Disorders, 5th edition. American Psychiatric Association. Washington DC, 2013:309-327.

[5] Kouyanou K, Pither C, Wessely S. Iatrogenic factors and chronic pain. Psychosom Med 1997; 57:597-604.

http://www.bmj.com/content/348/bmj.g1224/rr/689294
 
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barbc56

Senior Member
Messages
3,657
Fibromyalgia is now recognized by the American College of Rheumatology. However the tender point test has been rather controversial.

For myself, if I was poked just about any place on my body, it would hurt.

While the AAR, does mention gentle exercise and CBT, it appears as more of an adjunct therapy. I'm still not happy about this part but at least it is recognized.

One of the problems with the American College of Rheumatology criteria is that they were never intended to be applied to individual patients. Rather they were designed for use in clinical trials in order to ensure consistency and diagnosis. Most studies have found that at least half of individuals who have the clinical diagnosis of fibromyalgia will not fulfill the ACR criteria. As a result, most physicians use more general clinical criteria.

http://www.fibromyalgiapedia.com/fibromyalgia-causes/

However, it is now thought that Fibromyalgia is more neurological usually percipated by some kind of bodily injury such as whiplash, arthritis, as a trigger. ME/CFS may also be a triggering event.

I see a neurologist, however my PCP is also very knowledgeable about Fibromyalgia and its co-morbid conditions, so I quite fortunate.

I have found that the following site has been the most helpful dealing with fibromyalgia.. Note there are links to other information on the site.

http://fmaware.org/site/PageServerccdf.html?pagename=fibromyalgia_science


I have seen over 5,000 fibromyalgia patients over the past 20 years; most want to be reassured that their symptoms are the product of a "real disease" rather than figments of a fertile imagination--commonly ascribed to the psychological diagnosis such as somatization, hypochondriasis, or depression. The good news is that contemporary research is hot on the track of unraveling the changes that occur within the nervous system of fibromyalgia patients. The basic message is that fibromyalgia cannot be considered a primarily psychological disorder, but as in many chronic conditions, psychological factors may play a role in who becomes disabled and may even up-regulate the central nervous system changes that are the root cause of the problem.

Barb
 
Messages
13,774
I don't know much about FMS, so can't comment much.

I was just reading this 2005 Wessely paper that shows little, but is a bit relevant to concerns about the "iatrogenic harm that accompanies a diagnosis of fibromyalgia." (Which cited a 1997 Wessely paper).

http://onlinelibrary.wiley.com/doi/10.1002/art.21545/full

The impact of a diagnosis of fibromyalgia on health care resource use by primary care patients in the UK: An observational study based on clinical practice
  1. Gwenda Hughes1,
  2. Carlos Martinez1,*,
  3. Eric Myon2,
  4. Charles Taïeb2,
  5. Simon Wessely3
Article first published online: 29 DEC 2005


Abstract
Objective
To investigate the impact of a diagnosis of fibromyalgia (FM) in clinical practice on health care resource use in the UK.

Methods
Rates of visits, prescriptions, referral, and diagnostic testing were estimated in patients who had been diagnosed as having FM between 1998 and March 2003 in UK primary care and compared with those in matched controls. Rates were calculated in 6-month intervals from 10 years before until 4 years after the FM diagnosis.

Results
Patients (2260) were newly diagnosed as having FM; 81.3% were women. Their mean age was 49 years. FM patients had considerably higher rates of visits, prescriptions, and testing from at least 10 years prior to diagnosis compared with controls. By the time of diagnosis, FM patients had 25 visits and 11 prescriptions per year compared with 12 visits and 4.5 prescriptions per year in controls. Visit rates were highest for depression, followed by fatigue, chest pain, headache, and sleep disturbance. Following diagnosis, visits for most symptoms and health care use markers declined, but within 2–3 years, most visits rose to levels at or higher than those at diagnosis.

Conclusion
Primary care patients who had been diagnosed as having FM reported higher rates of illness and health care resource use for at least 10 years prior to their diagnosis, which suggests that illness behavior may play a role. Being diagnosed as having FM may help patients cope with some symptoms, but the diagnosis has a limited impact on health care resource use in the longer term, possibly because there is little effective treatment.
 

barbc56

Senior Member
Messages
3,657
Never, ever considering for one moment that this is exactly how somebody who had a real, but ignored, condition would behave.

You would think they would get that, wouldn't you?

If I remember correctly, years ago there was a study of patients with a chronic condition, I think it might have been MS, where many of the patients had shown some type of depression/anxiety symptoms within the prior two years of diagnosis. The conclusion was that the depression was possibly from the illness starting but not at a level where it would be detected.

I have a family member who is an oncologist/hematologist. He has often said that the old adage that positive thinking will increase a cancer patient's life span is not proven and is too simplistic as you also have to consider that a person's outlook may also be a reflection of how sick a patient is.

Barb
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I seem to remember recently reading a study on Medline which showed that positive thinking has absolutely no effect on survival rate with cancer.

However, I would think that having a positive attitude helps a great deal with making the time that is survived, of far better quality.
I'm not sure it's something that should be put out to the public (says she, having just made it very public indeed).

As an old saying goes; "'Tis better to travel in hope, than it is to arrive."
 

barbc56

Senior Member
Messages
3,657
I seem to remember recently reading a study on Medline which showed that positive thinking has absolutely no effect on survival rate with cancer.

However, I would think that having a positive attitude helps a great deal with making the time that is survived, of far better quality.
I'm not sure it's something that should be put out to the public (says she, having just made it very public indeed).

As an old saying goes; "'Tis better to travel in hope, than it is to arrive."

Absolutely. That's an important point.

@peggy-sue Thanks for adding this.:thumbsup:

Barb