Disability progression has an obvious impact of quality of life and is often an outwardly visible sign of MS. But quality of life (QoL) in MS can be influenced by many invisible symptoms. Here are the top hidden issues that may impact quality of life for those diagnosed with multiple sclerosis.
Fatigue is extremely common affecting 75 to 95 percent of people with MS. It can be one of the most troublesome symptoms regardless of one’s disease course or level of disability. The Social Security Administration recognizes fatigue as a significant cause of unemployment among people with MS. The first step in combating fatigue is working with your doctor to narrow down the cause.
One study found that depression was the main factor affecting quality of life in MS patients, more so than disability status, fatigue, or reduced sleep quality. Depression can be caused by neurological damage associated with MS, but may also be caused by the emotional rollercoaster associated with difficult life challenges and the uncertainty of MS. Symptoms of depression may include sadness, irritability, loss of interest, sleeping too much or too little, weight loss or gain, fatigue, physical restlessness, impaired concentration, and thoughts of suicide or death. If you experience any of these symptoms, please talk to your healthcare provider.
Cognitive issues can develop early on in the course of MS and impaired cognition can lead to a vicious cycle of frustration creating a negative impact on QoL. However, it is not always apparent whether cognitive decline is a result of depression, fatigue, neurological impairment, or a combination of factors. Patients should undergo neuropsychological evaluation so that appropriate treatment may be recommended and QoL may be protected.
Research shows that larger brain volume, cognitive reserve gained through life experience (such as years of education), and lifestyle choices (engaging in cognitive leisure activities such as reading) protect against disease-related cognitive impairment in MS patients.
Sexual dysfunction, which affects up to 75 percent of women and 90 percent of men with MS, can be distressing for the patient and have a negative impact on family relationships. In fact, sexual dysfunction has been shown to have a greater detrimental effect on mental health aspects of health-related QoL in MS patients than the severity of physical disability. However, patients may be reluctant to discuss sexual dysfunction and doctors may not ask.
Reduced sleep quality.
Sleep disorders, including obstructive sleep apnea (OSA) and insomnia, are common in MS. Reduced sleep quality can lead to fatigue and depression and CPAP therapy can improve these symptoms in patients with sleep apnea. A recent study showed that sleep disorders can reduce QoL of MS patients, especially in areas related to energy and emotion. In patients with OSA, physical abilities can also be negatively affected. Due to the complex relationship between fatigue, depression, and sleep disorders in MS, it can be difficult to detect the root cause in traditional QoL questionnaires.
For more information on Quality of Life and MS:
Lobentanz IS, Asenbaum S, Vass K, et al. Factors influencing quality of life in multiple sclerosis patients: disability, depressive mood, fatigue and sleep quality. Acta Neurol Scand. 2004 Jul;110(1):6-13.
Lysandropoulos AP, Havrdova E. 'Hidden’ factors influencing quality of life in patients with multiple sclerosis. Eur J Neurol. 2015 Oct;22 Suppl 2:28-33. doi: 10.1111/ene.12801.
Veauthier C, Gaede G, Radbruch H, Wernecke KD, Paul F. Sleep Disorders Reduce Health-Related Quality of Life in Multiple Sclerosis (Nottingham Health Profile Data in Patients with Multiple Sclerosis). Int. J. Mol. Sci. 2015, 16, 16514-16528; doi:10.3390/ijms160716514
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.