Poor Doctor Care Causing Increased Pain and Reduced Quality of Life in Fibromyalgia

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thank god this is being investigated. People with FM like those with ME/CFS are often treated poorly at doctors offices. This study suggests this leads to increased pain and reduced QOL - and how could being treatly poorly by your health care provider not lead to such results?

"The main finding in this study suggested that physician attitudes of distrust; suspicion; lack of support for and acknowledgment of fibromyalgia, collectively termed invalidation; and use of complementary and alternative medicine were significantly associated with QoL. Fewer invalidating experiences and use of complementary and alternative medicine were associated with higher QoL. It was also demonstrated that higher trust in physician and fewer referrals to health care providers were significantly associated with less pain."

" The results of this study suggest that fibromyalgia patients could benefit from empathy, trust, and recognition of the disorder from physicians"...as could any patient seeing a doctor :)

Prim Care Companion CNS Disord. 2014 Oct 9;16(5). doi: 10.4088/PCC.14m01664. eCollection 2014. Impact of invalidation and trust in physicians on health outcomes in fibromyalgia patients. Lobo CP1, Pfalzgraf AR1, Giannetti V1, Kanyongo G1.
Abstract

INTRODUCTION:

Patients with fibromyalgia have reported experiencing discouragement, rejection, suspicion, and stigma during their encounters with health care professionals. The impact of these experiences on health outcomes has not been extensively examined. The aim of this study was to assess fibromyalgia patients' self-reported quality of life (QoL) and pain based on the following: perceptions of physician attitudes, trust in physicians, perceptions of medical professionals, type of treatment, and various demographic variables.
METHOD:

An online survey was advertised in the electronic newsletter of the National Fibromyalgia and Chronic Pain Association and data were collected in February 2013. A new scale was developed to measure patient perceptions of physician attitudes. Patients' trust in physicians, patients' perceptions of medical professionals, and QoL were measured using the following standardized scales: Trust in Physician Scale, Illness Invalidation Inventory (3*I), and Quality of Life Scale-16 (QOLS-16).
RESULTS:

The survey resulted in 670 usable responses. The Patient Perceptions of Physician Attitudes Scale showed high internal consistency and convergent validity (Cronbach α = 0.91). Factor analysis of the Trust in Physician scale, 3*I, and QOLS-16 showed a 1-dimensional structure. Invalidation, use of complementary and alternative medicine, income, age, and marital status were significant predictors of QoL (P < .001). Trust in physician, income, education, and number of referrals to health care providers were significant predictors of pain (P < .001).
CONCLUSIONS:

Invalidation, trust in physician, and use of complementary medicine can have significant impact on QoL and pain in fibromyalgia. Further research in more representative fibromyalgia samples may help confirm findings.
 

Rosie

New Member
I'm so glad this issue is receiving research attention. Like many FM patients, I've experienced the discouraging (and often infuriating) effects of invalidation by doctors many times. Most recently, my wonderful (and validating!) rheumatologist sent me for a neurology consult to rule out non-FM causes for the paresthesia, numbness and nerve pain I started experiencing when overheated. Without examining me or conducting a single test, the neurologist told me contemptuously that the symptoms I was experiencing were "just fibromyalgia," and therefore I should see my rheumatologist, she couldn't help me. This sent me into a tailspin of anger and anxiety that naturally exacerbated my stress/ insomnia/ pain cycle. Thank god my rheumatologist takes me seriously. I swear her genuine concern for my well-being has probably helped me at least as much as the meds she prescribes.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Just Fibromyalgia! That's rich....The arrogance and lack of compassion on the part of some doctors is just stunning! It's not like they're talking to sick people or anything....

You may want to consider reviewing both the doctors in our review section - http://cortjohnson.org/forums/reviews/category/9/ - that way people can hopefully steer away from the neurologist and perhaps give the rheumatologist a chance.
 

GracieJ

Active Member
Here is the other side of the coin, which is just as damaging to patients who truly have fibromyalgia.

I had a client come in for a massage who brought a detailed medical history and a doctor's note to okay massage. She had all sorts of things going on, was on many medications, and had recently ended cancer treatment. We talked while she was on my table, and she told me that her rheumatologist had tried to add one more dx to the mix - fibromyalgia. As this woman has no muscle aches and pains, she resisted the doctor's findings. It turned out she (the doctor) was basing diagnosis on one symptom, a couple of tender spots. There was no discussion of the other 65 or however many symptoms can occur with fibromyalgia. Angry that her patient refused "treatment" for fibromyalgia - Lyrica - the rheumatologist discharged the patient, in effect firing her as a patient for non-compliance.

Without telling my client my own history, I gave her a run-down of what true clinical fibromyalgia can look like. She had that deer in the headlights look for a bit, then reiterated that there was no way she had it, not even close, so good riddance to that doctor.

The tender points are no longer used in the official criteria for diagnosis anyway.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
That is the other side of the coin! Glad she didn't have to try Lyrica...It's just tricky isn't it. She was on lots of drugs and had ended cancer treatment. A lot of people experience a CFS-like condition after cancer and post-cancer fatigue is getting more and more study - and then she's on all these drugs for her other conditions. She is a complicated patient!
 

Rosie

New Member
Just Fibromyalgia! That's rich....The arrogance and lack of compassion on the part of some doctors is just stunning! It's not like they're talking to sick people or anything....

You may want to consider reviewing both the doctors in our review section - http://cortjohnson.org/forums/reviews/category/9/ - that way people can hopefully steer away from the neurologist and perhaps give the rheumatologist a chance.
Thanks for the empathy and the suggestion. I'll definitely review the docs. I have a very kind and encouraging pain management doc too, so I'll review him as well. Thanks for all that you do fir our community!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks Rosie - glad to see them on there. I hope other people find their way to them.
 

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