Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
From a research article:
http://synapse.koreamed.org/search.php?where=aview&id=10.3344/kjp.2015.28.3.169&code=0047KJP&vmode=FULL
INVALIDATION AND LOW QUALITY OF LIFE
There are too many symptoms in this disorder, the symptoms appear too severe and too unusual, and the patients appear as being healthy when compared with patients with other pain disorders [11, 12]. Due to the subjective nature of symptoms and lack of physical or laboratory features in fibromyalgia, patients may be faced with disbelief and distrust about the legitimacy of their illness in family and/or social interactions. This condition was recently described as 'invalidation' [42]. Invalidation is a new concept in rheumatologic disorders and fibromyalgia and it seems to be having a high impact on patients and societies, but research on various aspects of it in fibromyalgia is scarce.
In many cases, both invalidation and the comorbidities associated with fibromyalgia impair the patient's quality of life to a significant extent, culminating in loss of employment and/or withdrawal from social life [43]. Indeed, "discounting", one of invalidation dimensions, correlates strongly with poor social and physical functioning as well as impaired mental health in fibromyalgia. It was also revealed that negative social interactions (discounting) might have stronger effects on health than positive social interactions (lack of understanding) [44]. So, aside from having a negative effect on mental well-being, invalidation could impact physical health and social functioning as well. It also decreases social support and increases social rejection [42]. Finally, in response to social rejection, patients may hide their symptoms and isolate themselves from society, which is likely to influence their healthcare, and in turn, their relationship with spouses, colleagues and medical care providers [45].
Furthermore, it was studied recently that invalidation can alter disease impact on health status and symptom severity in fibromyalgia patients. So, the more invalidation experienced by the patients leads to ahigher score on the Revised Fibromyalgia Impact Questionnaire [an instrument for evaluation of fibromyalgia impact on life], indicating a greater disease impact and the greater symptom severity [46, 47].
Consequently, the existence of fibromyalgia cluster symptoms, comorbidities, difficulties in diagnosis and management, and patient experience of invalidation lead to poor quality of life; so that for almost any symptom characteristic or comorbid illness, the subjects with fibromyalgia have SF-36 or SF-12 scores that are more abnormal than those of control groups [48, 49]. Only patients with end-stage renal failure have a lower quality of life; and patients having other pain disorders have been identified to have better scores of quality of life than fibromyalgia [10, 48].
http://synapse.koreamed.org/search.php?where=aview&id=10.3344/kjp.2015.28.3.169&code=0047KJP&vmode=FULL
INVALIDATION AND LOW QUALITY OF LIFE
There are too many symptoms in this disorder, the symptoms appear too severe and too unusual, and the patients appear as being healthy when compared with patients with other pain disorders [11, 12]. Due to the subjective nature of symptoms and lack of physical or laboratory features in fibromyalgia, patients may be faced with disbelief and distrust about the legitimacy of their illness in family and/or social interactions. This condition was recently described as 'invalidation' [42]. Invalidation is a new concept in rheumatologic disorders and fibromyalgia and it seems to be having a high impact on patients and societies, but research on various aspects of it in fibromyalgia is scarce.
In many cases, both invalidation and the comorbidities associated with fibromyalgia impair the patient's quality of life to a significant extent, culminating in loss of employment and/or withdrawal from social life [43]. Indeed, "discounting", one of invalidation dimensions, correlates strongly with poor social and physical functioning as well as impaired mental health in fibromyalgia. It was also revealed that negative social interactions (discounting) might have stronger effects on health than positive social interactions (lack of understanding) [44]. So, aside from having a negative effect on mental well-being, invalidation could impact physical health and social functioning as well. It also decreases social support and increases social rejection [42]. Finally, in response to social rejection, patients may hide their symptoms and isolate themselves from society, which is likely to influence their healthcare, and in turn, their relationship with spouses, colleagues and medical care providers [45].
Furthermore, it was studied recently that invalidation can alter disease impact on health status and symptom severity in fibromyalgia patients. So, the more invalidation experienced by the patients leads to ahigher score on the Revised Fibromyalgia Impact Questionnaire [an instrument for evaluation of fibromyalgia impact on life], indicating a greater disease impact and the greater symptom severity [46, 47].
Consequently, the existence of fibromyalgia cluster symptoms, comorbidities, difficulties in diagnosis and management, and patient experience of invalidation lead to poor quality of life; so that for almost any symptom characteristic or comorbid illness, the subjects with fibromyalgia have SF-36 or SF-12 scores that are more abnormal than those of control groups [48, 49]. Only patients with end-stage renal failure have a lower quality of life; and patients having other pain disorders have been identified to have better scores of quality of life than fibromyalgia [10, 48].
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We're all troubled.WSo, to remind ourselves we're not at rock bottom (this is a reverse optimism thing I learned as a kid):We are not living on the island of Krakatoa when the volcano goes boom!Yeah, okay, that sucks.***Toay in 1942, Pierre Laval announced that the way to free France was for Germany to win WW2. Pierre did not win a lot of friends. When the war ended, quite quickly he was tried...
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
Again, thank you for this article. It validates all of our invalidation.
gentle hugs
This is what I have really been struggling with lately. I have posted a couple of one page articles on FB on what RA feels like, and have had like one or two people respond or even click like. That makes me feel like less than nothing! I want to say to my "friends" and family.....you mean you can't take two minutes to read this and show me a smidgen of support?!
I just can't get over how insensitive and uncaring these people are!
The article makes me appreciate all the crap we deal with, how hard it all is.