Perhaps several years of managing a chronic illness has 'trained' patients to stay at home, avoid crowded places to avoid infections and establish systems for home delivery of medication, grocery, vegetables etc. Patients have developed their own coping mechanisms of pacing work, taking breaks when needed and have carefully nurtured support systems. This perhaps helped them face the challenges posed by the lockdown in a prepared manner.
Having interacted with patients across India and other countries over several years, I have heard about many non-pharmacological measures that patients adopt to manage the everyday challenges of living with Sjogren’s syndrome. All the patients that I interacted with are privileged enough to have access to tertiary specialists, can afford medication and are privileged to practice lifestyle changes and engage in adjunct therapy to lead better lives. Although they follow allopathic treatment prescribed by Rheumatologists, many also follow other forms of medical treatment like Ayurveda, Homeopathy, Naturopathy. In USA, adjunct therapies such as massage therapies, acupressure and acupuncture are recommended by medical practitioners for managing chronic pain.
A healthy well-balanced diet has been recommended globally. Enhancing greens and fruits especially rich in anti-oxidants (e.g. pomegranate, berries etc.) in one’s intake and avoiding highly processed foods as also refined flour and oil is well accepted. Gluten is emerging as a ‘culprit’, more so in the West where gluten free diets are becoming increasingly popular. Indian cuisine has always included spices like ginger and turmeric. With the realization that these have anti-inflammatory properties, these have now acquired a cult status in the Western countries with Golden Milk being the favoured drink at StarBucks! Turmeric and Boswella capsules, Blackpepper and Ginger capsules are becoming the new favourite supplements. Moringa is fast emerging as a superfood. In India the consumption of all these anti–inflammatory foods has consciously increased among patients but mostly as a part of their diet for example moringa soup, herbal juices and anti-oxidant teas, rather than as pills. Wheat grass juice with lemon, ginger, tulsi (basil), pudina (mint) is a popular antioxidant drink preferred as an early morning drink.
Patients deal with dry mouth by sipping water or ice continuously. In western countries sucking on sugar free candies containing xylitol is common. In India, it is not very easy to find these candies and people have improvised to sucking on cardamom, clove or liquorice sticks. Many patients suffer from digestive problems including acidity, bloating, heartburn and poor digestion leading to constipation. Some patients reported the use of a powder consisting of methi (fenugreek), ajwain (carom seeds) and kaali jeeri (purple fleabane)to improve digestion. Eating small meals, reducing spice intake and including liquids such as daal, soup, curries in meals helps. Eating early dinner helps in reducing night time heartburn issues. Culinary practices and food choices are highly region specific. Milk and milk products enjoy a mixed response. While some patients are fine with including these in their regular diet, others avoid milk products especially curd in the evening. Fermented foods also have some takers and some haters. Vegan diets are fast becoming popular in the West.
Medicated Ghee (Asthigir Ghrit) for joint pain management is increasingly gaining in popularity. Some patients are also consuming food supplements which have cow urine as an ingredient. Herbalife is another popular food supplement especially for those who are unable to manage adequate food intake. Chyawanprash made from amla (gooseberries) has acquired almost cult status as an immunity booster in Indian society for generations.
Let me share an anecdote, Mrs. B needed to undergo surgery for a non-healing ulcer. Despite several medicines, her Hemoglobin was so low that the Surgeon could not operate. She heard about the benefits of the cactus fruit known as the prickly pear (findala) as a traditional medicine for anaemia in the Saurashtra Kutch region. Her husband approached Sjogren’s India with a request to help them obtain the juice. Two bottles were supplied by an ex-colleague at the Centre for Environment Education(CEE) in Jasdan near Rajkot. Mrs. B started her daily Findala juice therapy. Within one month her Hb level had risen to an acceptable level and she was able to get her much needed surgery done. She continued with the findala therapy till she lived.
Fatigue is one of the most debilitating symptoms for a SS patient. Patients learn to reduce their level of activity, space out their work and take breaks to cope. Regular exercise including gentle stretching, brisk walking or 30 minutes of aerobic activity/dancing, swimming, tai chi or any other martial arts forms are practiced by a small section of patients which has huge benefits. Yoga has emerged as a very popular adjunct therapy. Patients who have been practising for several years swear by its physical as also mental wellness benefits. Regular practice of pranayama is known to improve lung health. Patients practicing Meditation swear by its benefits. Many patients are followers of the ‘Art of Living’ and find the Sudarshan Kriya to be highly beneficial. Yoga Nidra guided meditations which are available on YouTube are increasingly popular. Patients suffering from depression also reported benefitting from the practice of Yoga and Meditation. Pursuing hobbies and engaging in sports also helped them overcome their depression. Some patients reported feeling much better after talking to members of the support group. Feeling ‘Less Alone’ helped them feel better.
Sensitivity to sunlight due to dry eyes have patients wearing glares even when indoors if the room is brightly lit. A flare up of dry eyes during the hot weather, excessive use of computers or screens and stress can cause severe inflammation, redness and eye fatigue. Patients have tried to soothe the eyes with hot or cold compresses. Some patients have reported benefitting from applying ghee or coconut oil on the eyelids at bedtime besides the usual eye drops and ointments. Maintaining eyelid hygiene by washing with baby shampoo has proven useful especially for those with blepharitis.
Dry Skin causes itching, flaky unhealthy skin. Using cream based dry skin moisturizers give some relief. Cocoa and Shea butter creams are more effective than regular moisturizers. Oil massages improve the quality of the skin. Patients need to use gels and moisturizing soaps.
Maintaining good sleep hygiene is recommended by Doctors. Poor sleep is one of the main culprits for causing fatigue, brain fog and stress among patients. The abstinence from late evening caffeine, and bright screens like computers, Television, mobile for two hours before sleep, maintaining regular sleep hours is well known but rarely practiced by patients. Those who do manage to get good 8+ hours of sound sleep definitely show overall improvement in their health status by improved energy levels and decreased susceptibility to flares. Sleep Music is fast becoming popular as a sleep inducing aid. Patients have also reported the benefits of using ganthoda (peeprimul) powder for insomnia.
While the Coronavirus is here to stay… at least till we have a cure or a vaccine, the chronically ill, need to actively take charge of our health. Patients need to make conscious efforts at remaining stable and avoid flares. Although visiting hospitals is to be avoided, it is imperative that patients listen to their body and seek timely medical advice should there be any deterioration in health status. As a patient and a patient leader, I sincerely feel we need to recognize the tipping point when patients need to reach out and seek medical care instead of waiting till they are over the hill…
Till then Stay Safe and Keep Up your spirits!
Please note that this article is based on learning acquired through informal interaction with patients since 2006. A proper scientific study is needed to properly document the non-pharmacological measures mentioned here.
Kirtida Oza is the Co-Founder Director of Sjogren’s India. She believes that education and counselling enables patients to TAKE CHARGE of their own well-being.