| 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) |
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| Pain Management and Scleroderma |
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| 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 |
| Is chronic pain ruining your relationship? Researchers have found that people in pain who felt entitled to more support from their partners were more likely to have excessive or exaggerated perceptions and thoughts about the extent of their pain and the disability it caused. (This is known as catastrophizing.) Catastrophizing isn't a healthy or successful coping strategy; in fact, it's associated with higher levels of pain, distress, and depression. Denise Mann. CNN Health. Dec. 29, 2009. (Also see: Coping) |
| The pain of arthritis. Lupus, gout, scleroderma and Raynaud’s disease are all in the arthritis family. And bacterial infections such as gonorrhea or Lyme disease can cause arthritis. Arthritis is the leading cause of disability for Americans older than 15, according to the Arthritis Foundation. Carroll County Times. 01/25/09. (Also see: Arthritis) |
| Pain and Scleroderma |
| Pain Common in Systemic Sclerosis. Pain symptoms are an underappreciated issue in systemic sclerosis. Only a few small studies have examined the prevalence and severity of pain in this multisystem disorder, and none has considered whether pain and clinical variables differ between the limited and diffuse cutaneous subtypes of disease. Nancy Walsh, MedPage Today. 03/09/10. |
| Pain is Associated with Higher Physician Use in Patients with Systemic Sclerosis. Pain is common in SSc. In our sample, pain was strongly associated with physician use, even after adjusting for demographic and clinical variables. The results suggest the possibility that improved pain management could potentially reduce physician use in patients with SSc. Orit Schieir. (550) ACR/ARHP08. |
| 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: 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. |
| 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. |
| 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 |
| Arthritis sufferers benefit from the healing powers of yoga. As an increasing amount of research points to the health benefits of physical activity for those with rheumatic conditions, one type of exercise in particular seems to be growing in popularity is yoga. Gerri Grant. Canada Healthcare Newsletter. Hospital News. Mar 2009. (Also see: Arthritis and Alternative Therapies) |
| 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 |
| Nearly Half of Patients Misuse Their Pain Meds. Adherence to prescribed medication regimens is essential for effectively treating chronic pain conditions. However, a new study reports that therapeutic nonadherence, or “medical misuse,” of analgesics is common, with underuse more prevalent than overuse or abuse. Pain Treatment Topics February 5, 2010. |
| Mindfulness-based stress reduction (MBSR) for chronic pain conditions: variation in treatment outcomes and role of home meditation practice. MBSR treatment effects on pain, health-related quality of life (HRQoL) and psychological well-being vary as a function of chronic pain condition and compliance with home meditation practice. Rosenzweig S. (PubMed) J Psychosom Res. 2010 Jan;68(1):29-36. (Also see: Alternative Therapies) |
| New Resource Helps Meet Challenges of Caring for Loved Ones with Chronic Pain. Caregiver Cornerstones provides information, encouragement, and tools to help family caregivers meet the unique challenges of caring for loved ones suffering from chronic pain, such as making sure your loved one receives appropriate assessment and treatment of their pain. PRNewswire. 01/05/10. (Also see: Caregivers) |
| Brief Training In Meditation May Help In Pain Management. Living with pain is stressful, but a surprisingly short investment of time in mental training can help you cope. A new study examining the perception of pain and the effects of various mental training techniques has found that relatively short and simple mindfulness meditation training can have a significant positive effect on pain management. Medical News Today. 11/11/09. |
| Experts Warn Against Long-Term Use of Common Pain Pills. An expert panel of the American Geriatric Society has removed almost all non-steroidal anti-inflammatory drugs (NSAIDs) from the list of recommended medicines for older adults with chronic, persistent pain. According to this panel, long-term use of NSAIDs such as ibuprofen, naproxen, and high-dose aspirin is so dangerous that it would be safer for elderly people to take opiates such as codeine or morphine for pain relief, if they can’t get relief from acetaminophen. Roni Caryn Rabin. The New York Times. 05/06/09. (Also see: NSAIDS) |
| Effects of anger and anger regulation styles on pain in daily life of women with fibromyalgia (FM): A diary study. Our study suggests that anger and a general tendency to inhibit anger predicts heightened pain in the everyday life of female patients with FM. Henriët van Middendorp. European Journal Of Pain. 20 April 2009. (Also see: Fibromyalgia) |
| Current Approaches in Therapeutic Management of Chronic Neuropathic Pain. Neuropathic pain is briefly defined as pain caused by a lesion in the nervous system and is common in clinical practice. Pharmacotherapy and neurostimulation therapy are the two most recommended therapies for the treatment of this condition. Özlem Solak. Romatizma 2008, Cilt 23, Sayı 4, Sayfa(lar) 135-142. (Also see: Neurological Involvement) |
| How To Relieve Pain Without Medicine. For some people, pain can be relieved without using medicine. They use relaxation, imagery, distraction, and skin stimulation. The techniques are also useful along with pain medicines. Information about nondrug treatments for pain also may be available at a local hospice, cancer treatment center, or hospital pain clinic. Hospice. |
| 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. |
| 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 |
| Ocean coral 'offers pain therapy'. A compound harvested from soft coral off the coast of Taiwan could provide a new treatment for pain from intractable nerve damage, experts say. BBC News 08/04/09. |
| Effectiveness of transcutaneous electrical nerve stimulation (TENS) for treatment of hyperalgesia and pain. Evidence continues to emerge supporting the use of TENS for the treatment of a variety of painful conditions while identifying strategies to increase TENS effectiveness. J. M. DeSantana. Current Rheumatology Reports. 01/09/2009. |
| Chronic Pain Treatment Options. The key to relieving chronic pain lies within the patient/health care provider relationship. It may take a bit of investigation, but people living with pain must find a health care provider who can help them get the relief they need. And treatment does not always involve expensive medication. National Pain Foundation. October, 2008. |
| 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 |
| Chronic pain linked to low vitamin D. The study also found the patients with the lower levels of vitamin D self-reported worse physical functioning and worse overall health perception. UPI.com. 03/23/09. (Also see: Causes of Scleroderma) |
| Pain Is Not A Symptom Of Arthritis, Pain Causes Arthritis, Study Shows. The study revealed that pain signals originating in arthritic joints, and the biochemical processing of those signals as they reach the spinal cord, worsen and expand arthritis. ScienceDaily. 09/28/08. |
| 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... |
