First Raynaud’s Education/Support Day Elicits Exchange of Information & Ideas

Attendees of the first Raynaud’s Education & Support Day, held July 31 at the Sheraton Boston Hotel, learned how therapies such as acupuncture, massage, biofeedback and yoga can prevent or minimize Raynaud’s attacks; that “healing foods” such as avocados can boost the body’s defenses against disease; and how to guard against stressors that can trigger spasms.

The full-day program of lectures, workshops and product demonstrations was held in conjunction with the Scleroderma Foundation’s annual patient conference, whose attendees attended many of the Raynaud’s sessions. (Although few people with Raynaud’s have scleroderma, those with systemic scleroderma usually have Raynaud’s as a component of their disease.)

The agenda of Raynaud’s-specific talks included sessions about the medical aspects of the disease, nutrition, alternative therapies, advocacy, products that help to prevent Raynaud’s attacks and/or treat ulcers, and strategies Raynaud’s sufferers can use for coping with situations in the workplace, the marketplace and at home. 

“We’re very pleased with the success of our first event,” said Lynn Wunderman, founder and chair of the Raynaud’s Association, “Feedback from attendees regarding the quality of our session content has been very positive, and that’s the most important measure of the value we’re providing Raynaud’s patients and their families.

The kick-off speaker, Francesco Boin, M.D., discussed the medical aspects of Raynaud’s and treatment options.   Dr. Boin, assistant professor of medicine and staff physician at the Johns Hopkins Scleroderma Center in Baltimore, is involved in the clinical care of patients with primary Raynaud’s, scleroderma and other systemic rheumatic diseases.  (A video of his talk will be available from the Raynaud’s Association in the coming weeks.)

“Healing” Foods

Another popular session was a talk by Mary Ann Nirdlinger, M.D., a nutritionist who talked about the healing powers of foods.  Dr. Nirdlinger, a former anesthesiologist, had an epiphany of sorts when she investigated the histories of heart patients who kept returning to the hospital after treatment.  “Poor nutrition seemed to be a common denominator,” she said. 

A basic component of optimal nutrition is proper fat balance, she explained; i.e., the ratio of Omega 6 and Omega 3 fatty acids in the diet.  Large amounts of Omega 6 saturated fats add excess body fat, create stress to the joints, and convert to high cholesterol — which sets the path for many chronic illnesses.   Foods that contain these fats include cookies, crackers, sauces, salad dressings, baked goods and chips.  “Food manufacturers add them because they add shelf life to the products,” Dr. Nirdlinger explained.

The foods plentiful in Omega 3 fatty acids include fish (bigger, colder water fish in particular), grass-fed beef and dairy, fruits (avocados are especially good), vegetables, soybeans, walnuts, pumpkin seeds, wheat germ and flaxseed (ground very fine for those with digestion problems).  These have anti-inflammatory and anti-cancer attributes and keep the vascular system supple, especially important for Raynaud’s sufferers. 

A guideline for making good food choices is to select foods that are the closest to the way nature made them, says Dr. Nirdlinger.  “Choose whole grains and foods with lots of color,” she advises.  Probiotics (yogurt, kimchee, sauerkraut and cheeses have them) and phytochemicals also are important.  Phytochemicals include tea, soybeans, nuts, seeds, grape juice, cruciferous vegetables (e.g., broccoli, Brussels sprouts and cabbage), onions, garlic and olive oil.  Wine in moderate amounts helps blood flow in Raynaud’s patients, she added.

 

Alternative Treatments

Editor’s Note: While members have expressed interest in exploring alternative therapies, there is to date no definitive clinical evidence that these treatments can successfully be used to alleviate Raynaud’s symptoms. Research has been hampered by study design issues and the inability to reliably compare findings across trials. We advocate the need for better quality, more consistent study methodologies on alternative treatment options. Please keep in mind that even among clinically-proven treatment measures, no one solution will work for every patient. Please speak with your doctor before trying any of the following treatment strategies.

Another session featured four specialists in non-invasive treatments who were asked to speak on the application of their techniques to the needs of Raynaud’s sufferers. Kathleen Randolph, a yoga practitioner, noted that yoga increases circulation and aids in stress relief. “Proper breathing helps calm the mind, reduces blood pressure, aids respiration and moves oxygen into the muscles to help your body become more efficient,” she noted.

Although acupuncture has been used for thousands of years, said licensed acupuncturist Emily Konstan, no one knows why it works. The theory is that the fine needles placed in the proper points in the body (there are over 300 acupuncture points) stimulate nerve receptors. Few studies have been conducted specifically about acupuncture and Raynaud’s, Konstan says, but the results thus far indicate that the treatment warrants more study on how acupuncture can help circulation and decrease spasms. The Community Acupuncture Network (http://www.communityacupuncturenetwork.org/), a nonprofit organization, makes acupuncture more affordable and accessible by promoting acupuncture in community settings priced on a sliding scale ranging within $15-40 a treatment.

Another stress-reducing method is massage, explained Jessica Weagle, a massage therapist who is a Raynaud’s sufferer herself. Massage increases relaxation, helps circulation and eases muscular discomfort, she claims. A safe hands-on technique called myofascial release involves applying gentle sustained pressure into the myofascial connective tissue restrictions to eliminate pain and restore motion.

With biofeedback, a method combining “Eastern philosophy and Western gadgets,” the theory is that patients can train themselves to control, and possibly prevent, Raynaud’s attacks, says psychologist and biofeedback practitioner Inna Khazan, PhD. Sensors are attached to various parts of the body to measure sweat, heart rate, temperature and breathing. Using the feedback, the patient harnesses the power of mind-body medicine to control physiology. The goal is that with practice, the patient can make the changes (i.e., warm his/her hands) without the aid of the machines. According to Dr. Khazan, limited studies show that the method may have more potential to help those with primary Raynaud’s than for those with secondary Raynaud’s (those with underlying medical issues). A good resource for qualified biofeedback specialists is the Biofeedback Certificate International Alliance (http://www.bcia.org/), which certifies individuals who meet education and training standards in biofeedback. Keep in mind not all certified practitioners will have direct experience with Raynaud’s sufferers.

 

Be Your Own Best Advocate

The presenters emphasized that taking a proactive approach to our own health care is crucial with Raynaud’s – as it is with any medical condition. 

Jan Gnall, a health care professional with degrees in biology, medical technology and public health administration, knows the problems firsthand as a Raynaud’s sufferer.  Her session at the Raynaud’s conference emphasized the need for patients to educate themselves and, often, their doctors, as well.  “Document your attacks, know your triggers, minimize your stressors and share any new developments (color changes, ulcers, medication side effects, etc.) with your doctor,” she advises. 

Gnall uses the erectile dysfunction drug Cialis to treat her Raynaud’s – obtaining coverage for the off-label use by getting her doctor to write a letter to the insurance company.  She urged sufferers to talk with other patients about treatments that work for them.  “Investigate new clinical trials that you may join,” she added.  “Don’t wait for your doctor to tell you.”   

Proper planning while traveling and at work also helps Gnall be her best advocate.  She brings healthy snacks on trips, carries gloves and sweaters, and makes sure to talk to employers about her need to keep warm.

 

Sharing Ideas

Exchanging ideas with other Raynaud’s sufferers was a highlight of the Raynaud’s Education & Support Day.  While Gnall talked about using Cialis to curb her Raynaud’s, other patients shared their own tips.  At a roundtable session moderated by Lynn Wunderman, patients discussed techniques that helped them on the job and in other common situations.  One uses Viagra, another said that Dreft laundry detergent mixed with water helps him get rid of his ulcers.  Another patient talked about fingerless gloves to keep warm while typing.  Taping up the air vents directly above the work station also helps, said one sufferer.  Small space heaters – even a warming reptile lamp – were steps some use in the workplace.
 

Using the resources of the Raynaud’s Association and its website – filled with ideas, an active patient forum and product reviews – is an effective method upon which all agreed. 

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What are your ideas?  What products work for you?  Share them on the patient forum!  Raynaud’s Discussion Forum