| Emotional Adjustment and Scleroderma |
 Hello, I am Janey Willis, ISN Guide to Emotional Adjustment. I know from experience that scleroderma can place unique demands on patients and caregivers alike. I have systemic scleroderma (SSc). It is common to suffer reactive depression with scleroderma. If you or someone you care about is having a difficult or suicidal time right now, call your nearest suicide hotline, or a doctor, or hospital. This is a medical emergency and it is okay to go to the emergency room or to call for help from your local police or fire department. The important thing is to make a call—any call—until you find help. | |
| Emotional Adjustment and Scleroderma (MAIN MENU) | | | |
| Pain Management and Scleroderma |
| |
| Overview of Pain |
| Pain can be an acute pain that comes on suddenly and goes away quickly. Pain can also be a chronic pain that comes on slowly and persists for months and even years. Many people with scleroderma suffer from chronic pain; therefore, in order to maintain an acceptable quality of life it is important to learn how to manage the pain. |
| Pain relievers and prescription drugs are a common treatment for pain, and, in some cases, necessary in order to get some level of relief. However, managing pain goes beyond medication. Managing pain requires lifestyle changes such as reducing stress, learning how to relax, improving your sleep patterns, eating better, working with physical therapists, and getting more exercise. |
| If you suffer from chronic pain, please see your primary care physician and a pain management specialist. They will work with you to find the source of your pain and ways to manage it. It may take a while, but when you suffer from chronic pain, you already know that any relief is welcome relief. |
| Pain: What is it? Pain is a sensation that hurts. It may cause discomfort, distress or agony. It may be steady or throbbing. It may be stabbing, aching, or pinching. However you feel pain, only you can describe it or define it. Hospice Net |
| Pain and Scleroderma |
| The public neglect of rheumatic diseases: insights from analyses of attendees in a musculoskeletal disease (MSC) awareness activity. Many individuals having painful MSC seek medical help only when a very high threshold of pain is reached. Even while under treatment, the high mean pain scores suggest neglect of MSC that are not adequately recognised as important contributors to disability and decreased quality of life. Annals of the Rheumatic Diseases 2007;66:697-699. (Also see: Pain Management and Physician/Patient Relationships ) |
| Quality of pain’ in systemic sclerosis. In a recent study, pain is the single strongest predictor of physical function in SSc. Nevertheless, studies addressing the source of pain in SSc are lacking. Editorial. Rheumatology 2006 45(10):1185-1186. (Also see: Quality of Life with Scleroderma ) |
| Quality of Life and Functional Status in Systemic Sclerosis Compared to Other Rheumatic Diseases. Joint involvement in SSc is more disabling than joint involvement in psoriatic arthritis, and patients with SSc experience more severe pain than patients with rheumatoid arthritis. J Rheumatol 2006 June;33:1117–22. (Also see: Quality of Life with Scleroderma ) |
| Learning from Pain Scales: Patient Perspective. Two most frequently used clinical scales are the verbal rating scale (VRS) and the visual analog scale (VAS). Both scales are valid measures of pain intensity. The choice should depend on the setting, the clinician's goal, and the patient's level of education. Patient preference is central to better physician-patient communication. J Rheumatol NO. 7 JULY 2003;30:1584-8 |
| Exercise and Arthritis |
| How to Care for Yourself. Dozens of helpful ways to help you deal better with arthritis. Arthritis Foundation |
| Effects of Exercise in Warm Water on Pain and Cognitive Function in Middle-Aged Women with Fibromyalgia (FM). An exercise therapy three times per week for 16 weeks in a chest-high pool of warm water is an adequate treatment to decrease the pain and to improve cognitive function in previously unfit women with FM. D. Munguía-Izquierdo. OP0037-AHP EULAR 2007. (Also see: Fibromyalgia ) |
| Low impact aerobic exercise reduces fatigue in autoimmune conditions says multi-study review. A review of research shows that low impact aerobic exercise, such as walking and cycling, can effectively reduce fatigue in adults with chronic autoimmune conditions. PressZoom.com. 11/30/06. |
| Managing Pain |
| American Pain Foundation. Dedicated to eliminating the undertreatment of pain in America. |
| Pain Management Guide. Day-to-day life can be a battle when you’ve got chronic pain. With these tips, the good days will outnumber the bad days—and quality of life will win. WebMD. |
| Pain Management: Living with Chronic Pain. The ideal treatment for chronic pain is a comprehensive approach that addresses a person's physical, emotional, and cognitive needs. Successful treatment requires choosing a life-long plan of wellness that may include physician services, physical therapy, psychological counseling and occupational theraphy. WebMD. |
| More Than a Pill: Complementary Medicine Can Help with Chronic Pain. University of Missouri's study says various methods can complement, not compete with conventional medicine. University of Missouri-Columbia. 10/08/07. (Also see: Alternative Therapies ) |
| In Light Of Surging Sales Of Painkillers, Physical Therapists Urge Consumers To Seek Physical Therapy Before Medication For Pain Relief. There are many types of pain and inflammation that can be reduced by a physical therapist's intervention. Medical News Today. 08/22/07. |
| Transcendental Meditation reduces the brain's reaction to pain. Transcendental Meditation could reduce the brain's response to pain because neuroimaging and autonomic studies indicate that it produces a physiological state capable of modifying various kinds of pain. EurekAlert! 08/09/06. |
| Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter. Listening to music can reduce chronic pain by up to 21 per cent and depression by up to 25 per cent, according to a paper in the latest UK-based Journal of Advanced Nursing. It can also make people feel more in control of their pain and less disabled by their condition. Medical News Today. 05/25/06. |
| Floating Alleviates Chronic Stress-related Pain. The research study shows that individuals suffering from stress-related health problems such as chronic pain, depression, or anxiety are often helped a great deal by floating. The effect remains four months after the treatment period. Medical News Today 02/17/06. (Also see: Depression) |
| Clinical Profile of Rheumatic Disease Patients Referred to a Multidisciplinary Pain Center. Although patients with a primary rheumatologic process to account for pain constituted a small proportion of patients evaluated, improvement was considerable in over half. J Rheumatol No. 2 Feb. 2004;31:359-63. |
| Pain Treatments |
| Cod liver oil (n-3 fatty acids) as an non-steroidal anti-inflammatory (NSAID) drug sparing agent in rheumatoid arthritis. Out of 49 patients 19 in the cod liver oil group and out of 48 patients 5 in the placebo group were able to reduce their daily NSAID requirement by >30%. (PubMed) Rheumatology (Oxford). 2008 Mar 24. (Also see: RA, Alternative Therapies ) |
| Antioxidants: New Kid on the Block for Pain Relief? Researchers found that synthetic antioxidants practically eradicated pain-like behavior in nearly three-quarters of mice with inflamed hind paws. Ohio State University, Research Communications. 11/07/06 (Also See: Alternative Therapies ) |
| Pet Therapy |
| Calendar for a cause. Naperville-based PetsNPatients has put out the 2008 Year of Celebration calendar, which features people who are getting through their medical challenges with the help of their animals. The focus is on lupus and autoimmune diseases. ChicagoTribune.com. 11/29/07. |
| Pet Therapy: Huggable Healthcare Workers. "The dog can be a distraction to the pain that a patient feels, and also to the rigor or the monotony of the therapy. It provides comfort for those who respond to animals. It also is a method to improve movement, to improve speech, and cognitive functioning. Discovery Health. |
| Pet Therapy. Studies have shown that physical contact with a pet can lower high blood pressure, and improve survival rates for heart attack victims. There is also evidence that petting an animal can cause endorphins to be released. Endorphins are chemicals in the body that suppress the pain response. HealthLine. |
| Research on Pain |
| Has Science Unearthed The Holy Grail Of Pain Relief? Scientists studying one of nature's simplest organisms have helped to unravel the structure of a key molecule that controls pain in humans. The findings, published in the journal Nature, could rapidly advance research into the next generation of painkillers for relief of chronic conditions such as migraine and backache. ScienceDaily. University of Manchester. 07/13/07. |
| Catastrophizing, Pain, and Social Adjustment in Scleroderma: Relationships With Educational Level. Study findings support multiple models of interaction between education and pain-related cognitive/affective functioning, though in both mediational and moderational analyses, lower levels of formal education act as a risk factor for adverse pain-related outcomes. PubMed. Clin J Pain. 2006 Sep;22(7):639-646. |
| Personal Stories |
| Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory... |
| Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career... |
| Denise: Systemic Sclerosis and CREST. It all started when I was sixteen years old. I was having awful pains in my hands and feet... |
| Kelli: Morphea Scleroderma I am a twenty-six-year-old, married, mother of two girls in Texas. I was diagnosed with Morphea in the first grade... |
| Nettie: Systemic Scleroderma with CREST. Up until now I have done very well at pretending not to be ill... |
| Terry: CREST I was told that I have CREST by a doctor who saw me in a Workman's Compensation case... |
