May 12th is Fibromyalgia Awareness Day. The day I talk about Fibromyalgia More than usual to spread awareness and reduce stigma.
A brief history of my Fibromyalgia story
Back in the day as a kid I complained about knee pain, I had horrible insomnia, and a lot of fatigue for someone my age. Just tired all the time. Headaches all the time. I had an infinite amount of doctor appointments. And eventually more than a decade later at the age of 20 I was diagnosed with Fibromyalgia. But I wasn’t offered any treatment (I was told I was too young for medication) or any advice or any actual help… so I had to wing it. And back then the internets were not like today with too much information, back then there was too little information.
So I winged it. For many a year. And it turns out that doesn’t work too well. But a lot of us do this because what the hell else are we supposed to do? Anyway, eventually I was put on specific fibromyalgia medications when they came out. One caused a lot of weight gain and helped a bit. The other caused suicidal thoughts and actions and it didn’t matter if it may of helped because it could have killed me. So hit and miss there. Exercise helped if I started super duper slow and worked my way up over like six months. Or it did until I developed vertigo. Anyway, an assortment of things help and a lot of coping strategies. A lot of comorbid conditions really complicated my treatment, which is common.
The impact for me
- Comorbid mental health issue of depression complicated pain management and lowered quality of life
- Comorbid conditions like chronic daily migraine with aura and a vestibular disorder, among other things, complicated treatment and reduced quality of life further
- I was unable to peruse my PhD due to severity of illness (which got worse so I should have just went for it, frankly)
- I was unable to sustain full-time work due to severity of my illnesses. I did go down to part-time which slightly helped but then when my health got worse I became disabled.
- Unable to do very much housekeeping (I pace and do 10 minute rule… 10 minutes a day on housekeeping. My bf does the grocery shopping and the majority of the cooking)
- Financial instability and debt has become the norm
- Socialization is something I did not do when working, as it was impossible to manage with no energy left and no pain tolerance left. However, I slowly began to on a long term leave and part-time. And do 1-2 times a month, depending on how I feel. Relationships are hard to maintain as a result because energy is quite low.
- Inability to afford out of pocket treatments
The factors most consistently associated with indicators of poor health status among people with CFS or FM were
- being diagnosed with both CFS and FM;
- being diagnosed with 3 or more other chronic conditions; and
- being physically inactive (Table 4), independent of sociodemographic and health characteristics.
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Quality of life with fibromyalgia
Quality of life with fibromyalgia varies with a lot of factors. I decided to look up a few recent studies to see what they had to say about our quality of life and how it can be impacted. Also I want to look at other Impacts of fibromyalgia on our lives that also affect quality of life. And it turns out there is not well correlated statistical data on the subject as there is on, say, migraine disease which rather surprised me. However, we can dig into some studies and find some information to look at quality of life and impact in general if not statistical data.
Economic cost of fibromyalgia
- Work and disability status of 1,668 FM patients reported that 25% had received disability payments. (Wolf, J Musculoskelet Pain. 1993)
- Failure to diagnose a true case of fibromyalgia has its own costs, largely in excess general practitioner visits, investigations and prescriptions. (Annemans, Arthritis & Rheumatism. March 2008.)
- Use of complementary and alternative medicine is 2 ? times higher in FM patients. (Lind, Arthritis & Rheumatism. February 2007.)
- In 2012 the NFA in conjunction with Health Focus, Inc. conducted a study exploring the out-of-pocket expenditures for treatment. The following table depicts the studies outcomes:
Knight et al.Endnote20 estimated that FM costs the US economy $7333 per patient in lost productivity due to disability and $1228 per patient in lost productivity due to absenteeism. Thus, inability to work or reduced work time due to CFS or FM may affect income, as opposed to lower income being a determinant of these conditions.Canada stats
Areas that fibromyalgia people feel there is an impact on our lives are:
- Physical (pain, insomnia, fatigue)
- Emotional/Cognitive (Depression, anxiety, cognitive impairment, memory problems)
- Social (Social isolation, disrupted relationships with family and friends)
- Work/activity (Reduce activity of daily living, reduced leisure activities, activity avoidance, loss of career or unable to advance career or education)
They noted that long bouts of engaging in one activity could significantly worsen pain in the days after they had overextended themselves. Patients reported that exercise often made the pain much worse. Patients evaluated their days in terms of having a 1-hour, 2- to 3-hour, or a 4- to 6-hour window in which their fibromyalgia pain was not as intense and they could accomplish the day’s tasks. The window of less pain typically occurred from 10 o’clock in the morning to 3 o’clock in the afternoon. Participants rarely reported having two or three days in sequence in which they did not experience symptoms.
All of these impact quality of life:
- Financial hardship, strain and instability
- Inability to advance in career or becoming disabled
- Inability to purse educational goals
- Strain on all relationships in life and social life
- Limited capacity to function- limits capacity to care for house, self. Or leisure, hobbies, or travel.
In summary, from the patients’ perspective, fibromyalgia is more than a painful condition. It is associated with multiple symptom domains and has a substantially negative impact on function and quality of life.
This study was small but I found very little information out there discussing the overall impact on our actual quality of life. No statistics for example. Nothing really tangible. However, we know there are a lot of factors that negatively impact our quality of life. It is important to note these and study them because the impact can indicate poor outcomes and disability. These are areas of our life we want to improve, if at at all possible, but to do so we do need actual medical assistance with the Physical Impact of fibromyalgia– without that the rest of life as a whole falls apart. The only tangible facts I found were on financial impact which, we can all agree, take a massive toll on us.
Quality of life influence studies
My first question was what the hell is Type D personality? Apparently it is a ‘distressed’ personality. Involving two main traits: Negative affectivity and social inhibition (tend to express negative emotions and ‘inhibit self-expression’ in social relationships). With negative affectivity one tends to focus on negative aspects of life and more likely to experience negative emotions of distress, dissatisfaction, irritability, anxiety and depression. Socially inhibited people feel unsafe and vulnerable in social interactions. Type D is found in 21% of the population.
Type D personality is based on two stable personality traits: negative affectivity and social
inhibition. 20 Previous studies have suggested that patients with FM have negative affectivity32 and poor social QoL. However, to our knowledge, there are only two studies in the literature examining the frequency of type D personality in patients with FM. In a 559-case cross-sectional study from Netherlands, the prevalence of type D personality in patients with FM was reported to be 56%.34 In another study performed in Israel, 30% of FM patients were found to have type D personality.35 In the present study, 33% of FM patients were found to have Type D personality; this rate was significantly higher than that of healthy controls (12%). In previous studies, the frequency of type D personality construct in Turkey was described as follows: 27.7% in hemodialysis patients and 56.8% in patients with multiple sclerosis. Our study has demonstrated that type D personality trait is common among Turkish patients with FM.
I question whether people with fibromyalgia has a Type D personality Prior to their fibromyalgia developing. Or is it a result of having it. That is my question. I can see it as a result of living with fibromyalgia for some time. And in the study this makes for a lower quality of life in terms of pain, mobility, sleep, social and emotional functions compared to their non-Type D counterparts. And basically higher disease severity overall. However, it was a small study. Nevertheless, I can see how these factors would impact one physically in various ways which they mention hypothetically in the study may be happening… even just the stress impact of these factors.
Clinical and psychological factors play a relevant role in the decrease of Health Related Quality of Life in Fibromyalgia Syndrome patients.•Fibromyalgia Syndrome pain and related functional disability may increase depression and anxiety, aggravating the primary symptoms of Fibromyalgia Syndrome and indirectly increasing the negative influence of pain on Health Related Quality of Life.•It is necessary to evaluate and treat aversive emotional states in Fibromyalgia Syndrome.
Okay, so this one is a wee bit obvious. Anxiety and depression affect quality of life. Ergo and therefore, they should be treated in fibromyalgia treatment. Really. Go figure.
Our results suggest that FMS pain and related functional disability may increase depression and anxiety, in turn aggravating the primary symptoms of FMS and indirectly increasing the negative influence of pain on HRQoL. These results showed the need to evaluate and treat negative affective states in FMS.
I just thought I would point this one out because I know how important our mental health is to our overall well-being when it comes to fibromyalgia and any chronic pain condition. And how valuable it is if medical professionals and psychologists work effectively to treat the conditions simultaneously for our overall quality of life. It definitely impacts quality of life and complicates treatment and I am definitely an example of that. It is a tangle of pain and depression or anxiety, each feeding on the other, that needs to be untangled with substantial effort.
As we can see, there are a lot of factors that influence quality of life with fibromyalgia. And worsening quality of life is often due to having more comorbid conditions and mental illness added on top. All I found was conclusions like ‘factors negatively impact’ quality of life but not statistically how much. So there isn’t a lot out there. However, we do see some of the financial impact. The cost, the out of pocket cost, the increase in overall debt, the financial instability, the loss of career, the inability to pursue further career or education… all of which impact our financial well-being. However, for quality of life we have to look at the impact on social lives and relationships as well. Nevertheless, we know quality of life can be quite poor due to these factors ganging up on us and this often leads to more severity of symptoms, distress, and disability.