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How important is having social support in MS? Very, says study. So post, says Dave!

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  • How important is having social support in MS? Very, says study. So post, says Dave!

    Just by participating in this forum (and better yet, meeting up for a pint) we are helping each other with this disease. So I urge all of you to post away--it'll be good for you and your fellow active MSers. - Dave

    Symptom profiles of individuals with multiple sclerosis grouped by levels of social support

    K. Johnson, D. Amtmann, A. Verrall, V. Weir, A. Smith (Seattle, US)

    Introduction: Social support has been associated with quality of life for people with multiple sclerosis (MS). Social support as a construct can represent both the adequacy of social relationships in patient's lives as well as a metric for socio-economic status or a social determinant of health that is shaped by wider forces connected to health disparities and inequalities. The objective of this study was to examine symptom profiles including relative rates of pain, fatigue, physical and mental health, and psychological and cognitive functioning for individuals with MS grouped by high, medium, and low levels of social support.

    Methods: PROMIS measures of depression, anxiety, fatigue, pain, sleep disturbance, wake disturbance, physical ability and Neuro-QoL measures of general and executive cognitive function were completed by 613 community-dwelling individuals with MS as part of a longitudinal survey (2008 - 2009). Scores were compared to US population norms by tertiles of the Multidimensional Scale of Perceived Social Support (MSPSS) low (N=209), medium (N=204) and high (N=200).

    Results: Our data suggest an inverse relationship between symptom burden and social support. The low social support group reported higher levels of symptom burden on all measures as compared to the population norm (p < 0.001). The high social support group exhibited sleep and wake disturbance that were no different from the population norm (p > 0.05) and actually a reduction in anxiety and depression scores in contrast to the population norm (p < 0.001). In addition, we examined symptom burden by levels of self-efficacy with respect to MS management, which also revealed a similar pattern to social support (inverse relationship).

    Conclusions: The striking finding that respondents who reported low levels of social support and low levels of MS Self Efficacy, reported high levels of emotional distress and overall symptom burden has clinical implications. It seems unlikely that addressing individual symptoms will result in significant change for individuals and that rather interdisciplinary interventions need be individualized and target multiple variables.
    Dave Bexfield
    ActiveMSers

  • #2
    Makes sense! It goes the same for rates in heart attacks and depression. Similar rates are significantly lower in regions where family support is traditionally very important, like Italy or Brazil.
    I certainly feel better around friends and especially the MS support group I go to once a month. And it helps that my close-knit yoga group and work know about my MS and we are always there for each other.
    Definitely couldn't do without my boyfriend... minus the snoring aiding my sleep deprivation...

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    • #3
      Laura doesn't snore. But she does wake up early to go to work, forcing me to also wake up. The nerve!
      Dave Bexfield
      ActiveMSers

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      • #4
        I have been hesitant to join a support group. I have so much anxiety right now that I am afraid I will get in there and freak out. I feel like my anxiety worsens the more I focus on my MS...

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        • #5
          Listen to your gut, HETA78. It took awhile before I felt comfortable going to support group meetings, and I rarely go even now. Also know that it might take a bit to find a good group where you fit in well.
          Dave Bexfield
          ActiveMSers

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          • #6
            I would caution the assumptions about strong social networks and ties preventing or lessening symptoms of MS. How often do increasing symptoms over time cause our social network to shrink or atrophy? Is there a chicken or the egg question at play?

            Yes, it seems true happiness shared is multiplied while sorrow shared is divided. With so many symptoms tied to our emotions, it would seem a social network would be a boon. I'm just not sure the results as stated say exactly this.

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            • #7
              At first I was very hesitant to be a part of a social group for people with MS under the age of 35. I figured it would be like an AA meeting, or some sort of very depressing place.
              Obviously, there are moments when people should feel they are in a safe space to cry, and to let out their emotions they otherwise can't, as with others.
              I am glad that the support group that I go to once a month has had a very positive position on MS, where it's not always the focus of the meetings and we can just laugh at things in life.

              It's also fun to have all sorts of activities and to participate in things as friends with at least one commonality, but not necessarily have it be the main focus.

              For me it has been a form of release, and a relief. I look forward to the potluck meetings every time

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