Little did Anubha know six years back that an ankle sprain with a ligament tear was going to change her life forever. Dr. Anubha Mahajan, a young girl in her twenties, pursuing her dentistry, with dreams and ambitions like any other woman her age, suddenly fell victim to medical negligence. The result- a chronic pain condition called Complex regional pain syndrome (CRPS) that was going to make its ugly presence felt in her life forever.
“It was ligament tear but the doctor instead tied a plaster so hard that it was compressing my nerve. This led to a nerve injury and I started feeling weird symptoms like a thousand ants were biting me. My leg started turning blue and there was pitting edema in my foot. The plaster was later cut, but then the damage had already been done”. From then on life has been a painful journey with debilitating painful conditions, endless doctor visits, and numerous procedures.
“It was only in June 2015, that I was diagnosed with Complex Regional Pain Syndrome (CRPS). CRPS is a rare chronic neurological condition aka suicide disease (due to the level of pain) aka invisible illness/ disability. Before that, it was just doctors mocking me and questioning me before coming to the wrong diagnosis. Those numerous tests and scans were not much evidence to lead to the correct diagnosis.” Her current medical team headed by Dr. Dureja in Delhi has been very proactive in treating her.
Signs, Symptoms and Treatment for CRPS
Since there are no tests for CRPS, in 2004, the International Association for the Study of Pain (IASP) adopted a new set of guidelines for diagnosing it named the Budapest Criteria. The Budapest Criteria differentiates between ‘signs’, which are seen or felt by the person carrying out the examination, and ‘symptoms’ which are reported by the patient. Signs and symptoms include continuous burning or throbbing pain, usually in your arm, leg, hand or foot, sensitivity to touch or cold, swelling of the painful area, changes in skin temperature, changes in skin color, changes in the shininess of the skin, joint stiffness, muscle spasms, tremors, muscle weakness and loss (atrophy), decreased ability to move the affected body part.
Symptoms may change over time and vary from person to person. And according to this Anubha is a classic CRPS 2 patient. She lives in pain 24*7 and since her body cannot accept normal oral pain or neural medications now, her pain management mostly consists of IV medications which require frequent hospitalization on high pain level days.
Unlike others her age Anubha has spent the best years of her youth chasing doctors, looking for the right one who would treat her effectively and also, economically. While on a normal day Anubha can perform most of her activities on her own (barring a few with increased activity) a painful day can render her completely bedridden. This means sleepless nights, not being able to move around or do basic activities without help. And these painful days can sometimes last for several days. She was also bullied by her teacher for her illness and discontinued her Masters’ degree at the institute.
Anubha has been living a sustained life with a holistic approach with a proper balance between medicine, exercise, maintaining a diet, carrying emergency medications, and being careful and prepared for worse days. Now she is accompanied by a driver and a nurse due to the pandemic. She cannot travel to colder regions, cant climb stairs need a wheelchair for long distances on foot, cannot dance or play sports like before. CRPS is a progressive and debilitating condition. Lack of care can render her with loss of movement in her limbs, face, or speech.
Chronic Pain India Group
Anubha saw how most doctors and people lacked basic awareness about chronic pain conditions. She saw how there were many people like her who were fighting their personal struggles mentally & physically, getting mocked and misunderstood over their suffering. The loneliness of not being understood at home, workplace, hospitals, yet moving ahead with life.
Instead of being a victim of this condition, she decided instead to create a platform for fellow sufferers who battle painful syndromes on an everyday basis. Thus emerged Chronic Pain India in 2017, a charitable trust aimed at providing support to victims of such illnesses and create awareness to others about such conditions.
Today CPI community is growing. Activities like workshops, online physiotherapy sessions and counseling is given out to people who reach out to them. Run solely by volunteer help, CPI always on the lookout for kind souls to help them.
Being a chronic pain patient in the midst of a pandemic
The existing COVID 19 situation has only made things worse for chronic pain sufferers. “We have been put in the category of ‘vulnerable group’ along with disabled, old aged, rare diseases, children under 10 and chronic illnesses. These are actually the people at the most risk here with a compromised immune system. But there are no boundaries established to determine which of these needs care. We have to be further careful as it becomes more difficult for people like me to manage my illness”, says Anubha.
“All hospitals are now treating COVID and it’s not without risk for us to visit them in case of an emergency. People are having a hard time reaching out to their doctors and updating their prescriptions, due to which pharmacies are not issuing the medication. Also, there is also a hostility issue growing where people with disabilities, chronic pain, and invisible illnesses are being ignored a lot by medical professionals. It has taken us 3 years to get some attention. Finding proper medical care, policies and health care is a challenge and I hope some magic happens here and things get better.”
Anubha refuses to give up. “We won’t stop until we are heard, and things are changed for us. We have equal rights as every other Indian; we deserve to be treated equally. We may be suffering by conditions that are not visible to naked eyes at times, but we deserve better medical treatments and healthcare in India. We deserve to be understood in each and every aspect. We may be in pain, but we are strong. We don’t want mercy or sympathy, we want to be understood.”
Chronic pain is actually not a rare thing. One-fourth of the population suffers from some form of pain condition. There will definitely be someone around you who is suffering pain silently. Do not judge them but be supportive and educate yourself.