Swati Agrawal, a fibromyalgia patient keenly wishes for more awareness and treatment for this incurable, misdiagnosed and misunderstood, invisible illness. Find out how she maintains her health. Listen to her in the video below.
New Delhi, 12 May 2016: Well, you know what they say about best laid schemes of mice. In my case, that pretty much sums up Fibromyalgia. In fact, I think Robert Burns would have been impressed with how earnestly fibromyalgia made the schemes of my life go awry. Chronic invisible illness strikes one’s life like a whirlwind that upsets everything in its path. Chronic illnesses have some very debilitating symptoms such as chronic pain, fatigue, sleep disorders, cognitive problems, sensory overload and the like. They severely impact the lives of the patients by making it hard for them to do their household chores, work, socialize and carry on day-to-day activities.
SYMPTOMS OF FIBROMYALGIA
There are no reliable statistics available in India, but it is becoming increasingly clear that a large number of people suffer from illnesses such as fibromyalgia, chronic fatigue syndrome (CFS) and lupus. I am a fibromyalgia patient. Fibromyalgia causes pain in different parts of the body. Fatigue from fibromyalgia is especially debilitating, and leaves one completely exhausted. It makes it difficult for patients to sleep at night, and work in the morning. Sensory overload from noises, lights or other stimuli is also very difficult to manage. One of its worst symptoms is brain fog in which people face cognitive difficulties such as trouble remembering names, or not being able to read and comprehend. There are many people like me who fight many such horrible illnesses in silence.
LACK OF UNDERSTANDING
In spite of chronic invisible illnesses being widespread and having serious impact on quality of life, there is very less awareness about them. One of the worst impacts of lack of awareness about chronic illness is lack of understanding from family of patients, and their inability to have a caretaker. Family, friends and relatives can be wary of the diagnosis due to lack of visible symptoms, and often assume that the patient is faking it or being lazy or irresponsible. It causes rift in personal relationships. Lack of understanding from loved ones is very emotionally tormenting. We often feel alone and helpless as we struggle to manage a life with chronic illness without support and understanding.
LACK OF PROPER MEDICAL TREATMENT
Another result of lack of awareness is lack of proper medical treatment and facilities for people with chronic invisible illnesses. Many doctors are not cognizant of the illness and are not able to diagnose or treat them. My illness started with pains and aches that slowly increased to a level that I could not type or sit for long hours. Due to fatigue, I would spend most of the time lying on my bed when I was not working. I would often not even get up to arrange for food. I went to many doctors, desperately trying to find what was wrong. Although I had classic fibromyalgia symptoms, it took more than 2 years for me to get the correct diagnosis. This is after having some of the best medical care. After the diagnosis, I could not find a doctor ready to listen and help me manage it. Lack of awareness also leads to less investment by pharmaceuticals in finding a cure. Without adequate health care, chronic illness patients live very tough lives.
SPREADING AWARENESS
12 May is the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). It is a day for spreading awareness about invisible illnesses such as fibromyalgia, chronic fatigue syndrome/ Myalgic Encephalomyelitis (ME) and Lupus.
Awareness is also important for patients as they learn to manage their illness using various treatments. After trying many different treatments, I have benefitted a lot from using anti-depressants with pain relief properties. I have successfully used duloxetine which treats pain associated with nerve damage. It helps manage the pain, and fatigue to an extent.
ALTERNATIVE TREATMENTS
Various alternative treatments also help in managing fibromyalgia. Shubha Menon, a Delhi based author, has tried many treatments from neurological medicines to acupuncture. She has been dealing with fibromyalgia for over 20 years, and has only found intermittent relief through daily practice of yoga. Many of fibromyalgia patients like Shubha and I were asked by doctors to go for physiotherapy. That’s because the doctors take a long time to realise that the symptoms were not a result of physical condition. Physiotherapy gives temporary relief to some people as long as they continue doing it, but I have not yet heard of it successfully helping to manage the symptoms over long term.
Other treatment that is often tried by fibromyalgia patients are pain relief massages, with Ayurvedic and Panchkarma treatments being popular in India. Many people have reported feeling relief in stiffness, pain and sleep problems with regular massages. They also usually work only till the massage is gotten done regularly. It is important to check the credentials of an Ayurvedic treatment center. Talk to the doctor to find out their knowledge about illnesses such as Fibromyalgia before going for the treatment. Many Ayurvedic and naturopathy centers provide residential treatment plans usually lasting around a week. They do help in providing temporary relief to many patients.
Hetal from Mumbai has tried the Hyperbaric Oxygen Therapy (HBOT) in which the patient is given pure oxygen to breathe in a pressurized chamber. The oxygen arguably stimulates growth and stem cells which promote healing. It is also used by cancer patients to recover from effects of chemotherapy. This treatment is not yet popular in India, and is only available at specialised clinics and hospitals. It tends to be expensive. Hetal experienced a difference in her pain and stiffness, and would recommend it to those with severe pain as it tends to be expensive. This treatment is fast gaining momentum in first world countries.
DO NOT LOSE HOPE
There are many other treatments as well. On this day, I would like to tell all fibromyalgia warriors to not lose hope. If your doctors have not been able to help, you can still learn to manage your symptoms and live a productive life. You will have to try a variety of treatments, and lifestyle changes to figure out what works best for you. When you are diagnosed, it is very scary as we have been doomed to suffer with an incurable illness without much guidance. But with time, we learn to manage it better through treatments, proper rest and sleep, good diet, regular exercise and other similar changes. I also hope that others will try to understand and empathise with this fight. Let’s hope for more awareness and a treatment for fibromyalgia.
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