“Debilitating, Profound” Fatigue Reported by Patients with Autoimmune Diseases Such as Scleroderma
Fatigue defined as “profound,” “debilitating,” and “preventing autoimmune disease (AD) patients from doing routine tasks. Fatigue affects patients’ mental and emotional well-being and their ability to work. And while most patients with autoimmune disease often discussed their fatigue with their physicians, many have not been prescribed treatment for the symptom.
These were some of the results of a recent online survey conducted by the American Autoimmune Disease Related Diseases Association (AARDA) in a total of 7,838 patients with autoimmune disorders recruited through the AARDA’s Facebook page.
The survey was online from the 7th of February until the 2nd of March, and less that 0.5% of the participants with only non-autoimmune disorders were excluded. Findings from the survey were recently presented at an autoimmune meeting in Washington, D.C.
Results from the survey indicated that 95%of the respondents were female, 46% of whom were of child-bearing age. The participants reported 82 autoimmune diseases involving systemic lupus erythematosus, rheumatoid arthritis, Sjögren’s syndrome, scleroderma, polymyalgia rheumatic, dermatomyositis, ankylosing spondylitis, juvenile idiopathic arthritis, psoriatic arthritis, vasculitis, Raynaud’s phenomenon among others. Nearly half of the respondents said they had one autoimmune disease (49%), while 29% reported two diseases and 22% reported having three or more autoimmune diseases.
The survey revealed that fatigue has a significant impact on AD patients’ mental and emotional well-being. They say it has resulted in increased emotional distress (88%), a sense of isolation (76%), anxiety (72%) and depression (69%). Nearly 87% reported that they discussed fatigue with their doctor, however 59% said they had not been prescribed or recommended any treatment by their provider. A total of 70% of the respondents said they believed they were judged negatively by others because of their fatigue.
“In this busy, busy world, it’s normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal,” Virginia T. Ladd, president and executive director of AARDA, said in the press release. “The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”