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Fatigue in Scleroderma

Author: Janey Willis. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Video Overview
Causes
Coping
Sclero Complications and Fatigue
Treatments
Personal Stories
Related Links

Video Overview

Fatigue in Systemic Scleroderma Video
Video: Fatigue in Systemic Scleroderma

Presented by Amanda Thorpe
*More Sclero Videos*

Mild to extreme fatigue is a common symptom of scleroderma. It affects your daily activities and overall quality of life. Fatigue is not in your head.

It is caused by physiological problems as well as psychological problems associated with the disease or other symptoms of the disease.

However, it is not part of the diagnostic criteria because it can occur with many other illnesses. (Also see What is Scleroderma? and Symptoms of Scleroderma)

Fatigue can affect your ability to carry out daily activities and overall quality of life. Fatigue is not in your head, it is caused by both physiological and psychological problems of the disease and its symptoms.

There is no cure for fatigue although there are some treatments that may help such as antidepressants and low impact aerobic exercise.

Fatigue is difficult to explain because most people think that rest or sleep relieves it. This lack of understanding can be very frustrating for those of us with scleroderma and our family and friends. We are frustrated by a perceived lack of understanding and sympathy and family and friends are frustrated by our inability to function as we once did because of something that seems so trivial.

It is important to give yourself permission to acknowledge that fatigue is a real problem and you have to accommodate it with lifestyle changes, pacing yourself, resting and/or sleeping when you need for as long as you need and most importantly learning to say NO!

Debilitating, Profound Fatigue Reported by Patients with Autoimmune Diseases Such as Scleroderma. Fatigue is a real symptom, yet for too long, it has been ignored and/or misunderstood by the medical community and the public at large. Scleroderma News, 04/22/2015.

Assessment of fatigue using the Multidimensional Fatigue Inventory (MFI) in patients with major depressive disorder (MDD). The Chinese MFI-20 is a valid and reliable instrument for the assessment of fatigue in MDD patients with residual symptoms. The construct of fatigue in MDD seems to be different from that in medical conditions. Comprehensive Psychiatry, 06/30/2014. (Also see Depression)

Fatigue: an overlooked determinant of physical function in scleroderma. Our findings indicate that fatigue is common in scleroderma and that pain and fatigue are significant determinants of physical functioning for patients with limited and diffuse disease subtypes. Sandusky SB. (PubMed) Rheumatology (Oxford).

Fatigue. Fatigue can refer to a subjective symptom of malaise and aversion to activity or to objectively impaired performance. British Medical Journal (BMJ).

Fatigue. A condition characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness and tiredness. Fatigue can be acute and come on suddenly or chronic and persist. MedicineNet.com

Causes

Fatigue Causes. Heart disease, lung disease, connective tissue disease, electrolyte disturbances, GERD and many other disorders. eMedicineHealth.

Can the Cancer-related Fatigue Case-definition Criteria Be Applied to Chronic Medical Illness? A Comparison between Breast Cancer and Systemic Sclerosis. Harmonized definitions and measurement of clinically significant fatigue will advance research and clinical management of fatigue in rheumatic diseases and other conditions. PubMed, J Rheumatol, 06/01/2015. (Also see Breast Cancer)

How to Tell When Feeling Tired Is a Sign of a Health Problem. It's not always easy to spot problematic lack of energy and the best advice is to pay close attention to exactly how it feels so you can describe it to your doctor in detail. Time Healthland, 04/19/2015.

Central pathways causing fatigue in neuro-inflammatory and autoimmune illnesses. Peripheral inflammation and immune activation, likely account for the severe levels of intractable fatigue and disability seen in many patients with neuroimmune and autoimmune diseases. BMC Medicine, 03/06/2015.

Placebo-induced decrease in fatigue: evidence for a central action on the preparatory phase of movement. This placebo-induced modulation suggests that placebos reduce fatigue by acting centrally during the anticipatory phase of movement, thus emphasizing the important role of the central nervous system in the generation of fatigue. PubMed, Eur J Neurosci, 12/19/2014.

Managing treatment fatigue in patients with multiple sclerosis (MS) on long-term therapy: the role of multiple sclerosis nurses. Patients with MS on long-term therapy may suffer from treatment fatigue and poor adherence. MS nurses are ideally situated to help patients cope with any factors that may limit adherence. PubMed, Patient Prefer Adherence, 2014 Aug 19;8:1093-9. (Also see Multiple Sclerosis)

Fatigue effects in daily life activities of kidney transplant recipients. Fatigue is directly related to the level of activities of daily living, causing less ability to perform activities in the higher level of fatigue, which is in the immediate postoperative period and only settling fully on the 9th postoperative day. PubMed, Transplant Proc, 2014 Jul-Aug;46(6):1745-9. (Also see Kidney Transplant)

Flight, fight or nap? Responding to stress with learned helplessness. Many people respond to stress and anxiety by getting tired, sleepy and depleted of strength, then taking a nap as a response to stress and anxiety. Washington Times, 01/07/2014. (Also see Causes of Scleroderma: Stress)

Primary Sjögren's syndrome (pSS) Fatigue is an ever-present, fluctuating and uncontrollable lack of energy. Fatigue in pSS clearly differs from ordinary tiredness. Patients describe it as ever-present, fluctuating and non-relievable lack of vitality being beyond own control. PubMed, Arthritis Care Res, 2013 Dec 10. (Also see Sjogren's Symptoms)

Fatigue in systemic lupus erythematosus. Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease often characterized by fatigue, with significant effects on physical functioning and wellbeing. Int J Clin Rheumtol, 2012 Apr 1;7(2):217-227. (Also see Lupus)

Cancer-Related Fatigue. Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent a person from functioning normally and impacts a person's quality of life. Cleveland Clinic.

Coping with Fatigue

Measuring fatigue in Systemic Scleroderma (SSc). The FACIT discriminates better than the SF-36 Vitality subscale at average to high ranges of fatigue, which is common in SSc, suggesting that it is preferred for measuring fatigue in SSc. PubMed, Rheumatology, 2012 Dec;51(12):2177-2185.

Your Guide to Never Feeling Tired Again, Read on for some simple, recharging changes that can help you tackle all of the energy stealers in your life. WebMD.

Scleroderma Complications and Fatigue

Biliary Cirrhosis Symptoms. Symptoms include chronic fatigue, intense and unrelenting skin itching, gradual darkening of the skin, small yellow or white bumps under the skin (usually around the eyes), dry eye syndrome, thyroid problems, and arthritic aches and pains. ISN.

Cardiac Involvement. Diffuse scleroderma can cause arrhythmias, pericardial effusion, and heart failure. Formation of scar tissue in the heart and lungs has recently been recognized as a general pattern probably contributing to overall fatigue. ISN.

Sjogren's Syndrome. Hallmark symptoms of Sjögren's include dry eyes, dry mouth, dry vagina. Sjögren's can also cause fatigue, and it can affect the skin, lungs, heart, kidneys, muscles, and central nervous system. ISN.

Treatments

Fatigue Treatment. Medical treatment of fatigue depends on the treatment of its underlying cause(s). Fortunately, many causes of fatigue may be treated with medications. eMedicineHealth.

Personal Stories

Alexandra: Scleroderma My scleroderma symptoms arrived in great style: reflux, itchy swollen skin, joint and muscle pain and tiredness. Plus hundreds of little red spots (telangiectasia). My mouth was tight and getting smaller too...

Angel G: Systemic Scleroderma with Raynaud's Phenomenon I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy...

Carrie Maddoux: Diagnosis, a Work in Progress I was overwhelmed with a general feeling of nausea, sweats, fever and fatigue...

D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma CREST) After an endoscopy it was discovered I had a Watermelon Stomach...

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form...

Dee B: Limited Scleroderma/CREST Syndrome I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill...

Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...

Donna C: Undifferentiated Connective Tissue Disease (UCTD) For the most part I have still been doing very good. Some little setbacks here and there but for the most part much better...

Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year...

Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors...

Janet Q: UTCD or MCTD I also experienced new symptoms; joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on...

Janice E: CREST/Fibromyalgia At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling...

Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times...

Kerrie: CREST Syndrome with Limited Scleroderma If I was not stressed before I went in, I certainly was then. I am going to get referred on to see someone different. Hopefully, I will be luckier second time around...

Krisha S: Multiple Autoimmune Condition I have multiple sclerosis (MS), fibromyalgia, and Stiff Person Syndrome...

Missie R: Mixed Connective Tissue Disease I finally asked for an ANA test to check for lupus. My family doctor hesitated because my symptoms were all over the board...

Rhonda L: Systemic Scleroderma I have recently been diagnosed with sclerodema, and am still trying to wrap my brain around this...

Rosie: Limited Systemic Sclerosis (Australia) Some of my symptoms may not be due to limited scleroderma, however most of these symptoms have appeared since my diagnosis...

Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is...

Chronic Fatigue Syndrome. Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. ISN.

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Copyright 1998-2015, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.