Fatigue Survey Exploring the prevalence of fatigue among autoimmune patients Question Title * 1. Have you been diagnosed with an autoimmune disease? Yes No Don't know/ No answer Question Title * 2. How many autoimmune diseases do you have? 1 2 3 4 5or > Question Title * 3. Please name the primary disease. Acute disseminated encephalomyelitis Acute hemorragic leukoencephalitis Acute motor axonal neuropathy Addison's disease Adult-onset Still's disease Agammaglobulinemia Alopecia areata Amyloidosis, autoimmune ANCA associated vasculitis Angioedema, autoimmune Ankylosing spondylitis Anti-glomerular basement membrane nephritis Anti-NMDA receptor encephalitis Antiphospholipid syndrome Antisynthetase syndrome Aplastic anemia, autoimmune Atherosclerosis, autoimmune Baló disease/Baló concentric sclerosis Behçet's disease Bickerstaff's encephalitis Bullous pemphigoid Cardiomyopathy Castleman's disease Celiac disease Chronic fatigue syndrome Chronic inflammatory demyelinating polyneuropathy (CIDP) Chronic Lyme disease Chronic recurrent multifocal osteomyelitis Churg-Strauss syndrome Cicatricial pemphigoid Clinically isolated syndrome (CIS, MS) Cogan's syndrome Cold agglutinin disease Complement component 2 deficiency Complex regional pain syndrome Congenital heart block Coxsackie myocarditis CREST syndrome Crohn's disease Demyelinating diseases Dermatitis herpetiformis Dermatomyositis Discoid lupus Drug-induced lupus Dysautonomia Endometriosis Enteropathy, autoimmune Eosinophilic esophagitis Eosinophilic fasciitis Epidermolysis bullosa acquisita Erythema nodosum Essential mixed cryoglobulinemia Evans syndrome Felty syndrome Fibromyalgia Gestational pemphigoid Giant cell arteritis Giant cell myocarditis Glomerulonephritis Granulomatosis with polyangiitis (formerly Wegener's) Graves' disease Graves' ophthalmopathy Guillain-Barré syndrome Hashimoto's encephalopathy Hashimoto's thyroiditis Hemolytic anemia, autoimmune Henoch-Schonlein purpura Hepatitis, autoimmune Hereditary sensory and autonomic neuropathies Hidradentitis suppurativa Hughes-Stoivin syndrome Hypogammaglobulinemia IgG4-related systemic disease Inclusion body myositis Inner ear disease, autoimmune Intermediate uveitis Interstitial cystitis IPEX syndrome Juvenile Arthritis Juvenile myositis Kawasaki disease Lambert-Eaton myasthenic syndrome Leukocytoclastic vasculitis Lichen planus Lichen sclerosus Ligneous Conjunctivitis Linear IgA disease Lupus erythematosus Lupus nephritis Lupus vasculitis Lymphoproliferative syndrome, (ALPS) Ménière's disease Microscopic colitis Microscopic polyangiitis Miller-Fisher syndrome Mixed connective tissue disease (MCTD) Mooren's ulcer Morphea Mucha-Habermann disease Multiple sclerosis Myasthenia gravis Myocarditis Myositis, autoimmune Neonatal myasthenia gravis Neuromyelitis optica (NMO) Neuromyotonia Neutropenia, autoimmune Ocular Cicatricial Pemphigoid Oophoritis Opsoclonus myoclonus syndrome Optic neuritis Orchitis Ord's thyroiditis Palindromic rheumatism Pancreatitis, autoimmune PANDAS/PANS Pediatric Neuropsychiatric disorders associated with Streptococcus Paraneoplastic cerebeller degeneration Paraneoplastic syndromes Paroxysmal nocturnal hemoglobinuria (PNH) Parry Romberg syndrome Pars planitis Parsonnage-Turner syndrome Pemphigus vulgaris Peripheral neuropathy, autoimmune Pernicious anemia POEMS syndrome Polyarteritis nodosa Polyglandular syndrome type 1, autoimmune Polyglandular syndrome type 2, autoimmune Polyglandular syndrome type 3, autoimmune Polymyalgia rheumatica Polymyositis Postmyocardial infarction syndrome Primary biliary cholangitis Primary progress multiple sclerosis Primary sclerosing cholangitis Progesterone dermatitis, autoimmune Progressive inflammatory neuropathy Psoriasis Psoriatic arthritis Pulmonary Fibrosis Pure red cell aplasia Pyoderma gangrenosum Raynaud's phenomenon Reactive arthritis (formerly known as Reiter's syndrome) Relapsing polychondritis Relapsing-remitting multiple sclerosis Restless legs syndrome Retinopathy, autoimmune Retroperitoneal fibrosis Rheumatic fever Rheumatoid arthritis Rheumatoid vasculitis Sarcoidosis Scleritis of the eye Scleroderma Secondary progressive multiple sclerosis Sjogren's syndrome Stiff person syndrome Subacute bacterial endocarditis Susac's syndrome Sydenham chorea Sympathetic ophthalmia Systemic lupus erythematosus Systemic scleroderma (see scleroderma) Takayasu's arteritis Thrombocytopenia Thrombocytopenic purpura, autoimmune Thyroiditis, autoimmune Tolosa-Hunt syndrome Transverse myelitis Type 1 Diabetes Ulcerative colitis Undifferentiated mixed connective disease (UCTD) Urticaria, autoimmune Urticarial vasculitis Uveitis, autoimmune Vasculitis Vitiligo Vogt-Koyanagi-Harada syndrome (uveomeningoencephalitis syndrome) Warm Autoimmune Hemolytic Anemia (wAIHA) Question Title * 4. Please name the secondary disease. Acute disseminated encephalomyelitis Acute hemorragic leukoencephalitis Acute motor axonal neuropathy Addison's disease Adult-onset Still's disease Agammaglobulinemia Alopecia areata Amyloidosis, autoimmune ANCA associated vasculitis Angioedema, autoimmune Ankylosing spondylitis Anti-glomerular basement membrane nephritis Anti-NMDA receptor encephalitis Antiphospholipid syndrome Antisynthetase syndrome Aplastic anemia, autoimmune Atherosclerosis, autoimmune Baló disease/Baló concentric sclerosis Behçet's disease Bickerstaff's encephalitis Bullous pemphigoid Cardiomyopathy Castleman's disease Celiac disease Chronic fatigue syndrome Chronic inflammatory demyelinating polyneuropathy (CIDP) Chronic Lyme disease Chronic recurrent multifocal osteomyelitis Churg-Strauss syndrome Cicatricial pemphigoid Clinically isolated syndrome (CIS, MS) Cogan's syndrome Cold agglutinin disease Complement component 2 deficiency Complex regional pain syndrome Congenital heart block Coxsackie myocarditis CREST syndrome Crohn's disease Demyelinating diseases Dermatitis herpetiformis Dermatomyositis Discoid lupus Drug-induced lupus Dysautonomia Endometriosis Enteropathy, autoimmune Eosinophilic esophagitis Eosinophilic fasciitis Epidermolysis bullosa acquisita Erythema nodosum Essential mixed cryoglobulinemia Evans syndrome Felty syndrome Fibromyalgia Gestational pemphigoid Giant cell arteritis Giant cell myocarditis Glomerulonephritis Granulomatosis with polyangiitis (formerly Wegener's) Graves' disease Graves' ophthalmopathy Guillain-Barré syndrome Hashimoto's encephalopathy Hashimoto's thyroiditis Hemolytic anemia, autoimmune Henoch-Schonlein purpura Hepatitis, autoimmune Hereditary sensory and autonomic neuropathies Hidradentitis suppurativa Hughes-Stoivin syndrome Hypogammaglobulinemia IgG4-related systemic disease Inclusion body myositis Inner ear disease, autoimmune Intermediate uveitis Interstitial cystitis IPEX syndrome Juvenile Arthritis Juvenile myositis Kawasaki disease Lambert-Eaton myasthenic syndrome Leukocytoclastic vasculitis Lichen planus Lichen sclerosus Ligneous Conjunctivitis Linear IgA disease Lupus erythematosus Lupus nephritis Lupus vasculitis Lymphoproliferative syndrome, (ALPS) Ménière's disease Microscopic colitis Microscopic polyangiitis Miller-Fisher syndrome Mixed connective tissue disease (MCTD) Mooren's ulcer Morphea Mucha-Habermann disease Multiple sclerosis Myasthenia gravis Myocarditis Myositis, autoimmune Neonatal myasthenia gravis Neuromyelitis optica (NMO) Neuromyotonia Neutropenia, autoimmune Ocular Cicatricial Pemphigoid Oophoritis Opsoclonus myoclonus syndrome Optic neuritis Orchitis Ord's thyroiditis Palindromic rheumatism Pancreatitis, autoimmune PANDAS/PANS Pediatric Neuropsychiatric disorders associated with Streptococcus Paraneoplastic cerebeller degeneration Paraneoplastic syndromes Paroxysmal nocturnal hemoglobinuria (PNH) Parry Romberg syndrome Pars planitis Parsonnage-Turner syndrome Pemphigus vulgaris Peripheral neuropathy, autoimmune Pernicious anemia POEMS syndrome Polyarteritis nodosa Polyglandular syndrome type 1, autoimmune Polyglandular syndrome type 2, autoimmune Polyglandular syndrome type 3, autoimmune Polymyalgia rheumatica Polymyositis Postmyocardial infarction syndrome Primary biliary cholangitis Primary progress multiple sclerosis Primary sclerosing cholangitis Progesterone dermatitis, autoimmune Progressive inflammatory neuropathy Psoriasis Psoriatic arthritis Pulmonary Fibrosis Pure red cell aplasia Pyoderma gangrenosum Raynaud's phenomenon Reactive arthritis (formerly known as Reiter's syndrome) Relapsing polychondritis Relapsing-remitting multiple sclerosis Restless legs syndrome Retinopathy, autoimmune Retroperitoneal fibrosis Rheumatic fever Rheumatoid arthritis Rheumatoid vasculitis Sarcoidosis Scleritis of the eye Scleroderma Secondary progressive multiple sclerosis Sjogren's syndrome Stiff person syndrome Subacute bacterial endocarditis Susac's syndrome Sydenham chorea Sympathetic ophthalmia Systemic lupus erythematosus Systemic scleroderma (see scleroderma) Takayasu's arteritis Thrombocytopenia Thrombocytopenic purpura, autoimmune Thyroiditis, autoimmune Tolosa-Hunt syndrome Transverse myelitis Type 1 Diabetes (Diabetes mellitus) Ulcerative colitis Undifferentiated mixed connective disease (UCTD) Urticaria, autoimmune Urticarial vasculitis Uveitis, autoimmune Vasculitis Vitiligo Vogt-Koyanagi-Harada syndrome (uveomeningoencephalitis syndrome) Warm Autoimmune Hemolytic Anemia (wAIHA) Question Title * 5. Would you say fatigue is a major issue for you? Yes No Don't know/ No answer Question Title * 6. Which statement better describes your fatigue: My fatigue is a like a normal tiredness. My fatigue is anything but normal. It is profound and prevents me from doing the simplest of everyday tasks. Neither/ No answer Question Title * 7. Would you say that fatigue is “probably the most debilitating symptom of having an autoimmune disease?” Yes No Don't know/ No answer Question Title * 8. Does your fatigue impact your: A great deal A lot A moderate amount A little None at all Overall Quality of Life Overall Quality of Life A great deal Overall Quality of Life A lot Overall Quality of Life A moderate amount Overall Quality of Life A little Overall Quality of Life None at all Sense of Self-Esteem Sense of Self-Esteem A great deal Sense of Self-Esteem A lot Sense of Self-Esteem A moderate amount Sense of Self-Esteem A little Sense of Self-Esteem None at all Family Relationships Family Relationships A great deal Family Relationships A lot Family Relationships A moderate amount Family Relationships A little Family Relationships None at all Parenting Abilities Parenting Abilities A great deal Parenting Abilities A lot Parenting Abilities A moderate amount Parenting Abilities A little Parenting Abilities None at all Romantic Relationships Romantic Relationships A great deal Romantic Relationships A lot Romantic Relationships A moderate amount Romantic Relationships A little Romantic Relationships None at all Professional Relationships Professional Relationships A great deal Professional Relationships A lot Professional Relationships A moderate amount Professional Relationships A little Professional Relationships None at all Career/ Ability to Work Career/ Ability to Work A great deal Career/ Ability to Work A lot Career/ Ability to Work A moderate amount Career/ Ability to Work A little Career/ Ability to Work None at all Mental Health/ Emotional State/ Mental Well-being Mental Health/ Emotional State/ Mental Well-being A great deal Mental Health/ Emotional State/ Mental Well-being A lot Mental Health/ Emotional State/ Mental Well-being A moderate amount Mental Health/ Emotional State/ Mental Well-being A little Mental Health/ Emotional State/ Mental Well-being None at all Question Title * 9. Have you ever discussed your fatigue with your doctor? Yes No Don't know/ No answer Question Title * 10. Did your doctor understand the extent of your fatigue? Yes No Don't know/ No answer Question Title * 11. Did your doctor prescribe or suggest treatment options for your fatigue? Yes No Don't know/ No answer Question Title * 12. Have you ever discussed your fatigue with your family and friends? Yes No Don't know/ No answer Question Title * 13. Did your family and friends understand the extent of your fatigue? Yes No Don't know/ No answer Question Title * 14. Do you believe others judge you negatively because of your fatigue? Yes No Don't know/ No answer Question Title * 15. What would you like people to know about your fatigue? Question Title * 16. What’s your current work status? Fulltime job Part-time job No job Unable to work/ No disability Unable to work/ Collecting disability Question Title * 17. Has your fatigue resulted in: A great deal A lot A moderate amount A little Not at all Depression Depression A great deal Depression A lot Depression A moderate amount Depression A little Depression Not at all Anxiety Anxiety A great deal Anxiety A lot Anxiety A moderate amount Anxiety A little Anxiety Not at all Increased Emotional Stress Increased Emotional Stress A great deal Increased Emotional Stress A lot Increased Emotional Stress A moderate amount Increased Emotional Stress A little Increased Emotional Stress Not at all Sense of Isolation Sense of Isolation A great deal Sense of Isolation A lot Sense of Isolation A moderate amount Sense of Isolation A little Sense of Isolation Not at all Ability to work Ability to work A great deal Ability to work A lot Ability to work A moderate amount Ability to work A little Ability to work Not at all Loss of employment Loss of employment A great deal Loss of employment A lot Loss of employment A moderate amount Loss of employment A little Loss of employment Not at all Filing for disability Filing for disability A great deal Filing for disability A lot Filing for disability A moderate amount Filing for disability A little Filing for disability Not at all Financial distress Financial distress A great deal Financial distress A lot Financial distress A moderate amount Financial distress A little Financial distress Not at all Question Title * 18. Have you sought professional mental health treatment as a result of your fatigue? Yes No Don't know/ No answer Question Title * 19. Has your primary care doctor suggested you contact a mental health professional as a result of your fatigue? Yes No Don't know/ No answer Question Title * 20. How much do you think race played in the acknowledgement or lack thereof of your fatigue symptoms? A great deal A lot A moderate amount A little None at all Question Title * 21. What is your age? Under 18 18-24 25-34 35-44 45-54 55-64 65+ Question Title * 22. What is your gender? Male Female Transgender No answer/ Prefer not to say Other (please specify) Question Title * 23. What is your ethnicity? (Please select all that apply.) American Indian or Alaskan Native Asian or Pacific Islander Black or African American Hispanic or Latino White / Caucasian Prefer not to answer Other (please specify) Question Title * 24. Would you be willing to be contacted for further information? If yes, please answer the following: First name Email address Done
