What started with a mild headache at age 16, gradually turned into back pain, which progressed to limb pain for Jaipur resident Akshita Gupta. She was preparing for her MBBS entrance examinations at that time. When she was 17, the pain had reached every inch of her body, and despite multiple tests and doctor visits, no conclusive diagnosis or reason was found. A couple more years of excruciating, debilitating pain later, through a method of medical exclusion, she was diagnosed with fibromyalgia.
“From parents to friends to teachers, no one believed me, initially,” said Akshita. “They thought I was giving excuses.”
The condition affected every aspect of her life, from workspaces to her friends. And yet, the dismissal of her pain was a constant reminder of how little people knew about the disease. She has battled doubting seniors and unsupportive bosses in her journey of finding and leading a decent independent life, despite her fibromyalgia.
At 25 now, Akshita is a doctor who’s working towards increasing awareness around this chronic condition.
What is Fibromyalgia?
Onlymyhealth spoke to Dr. Vikas Tyagi, Consultant and Founder of Noida Pain Management Clinic to understand the nuances of the condition. His inputs are under the Doctor Speaks section in the copy.
“Fibromyalgia is a painful condition where the patient has whole body widespread pain for many months or years with morning stiffness and fatigue,” explains Dr. Tyagi. “Patients feel anxious and irritated and usually visit multiple doctors without any decent relief.”
Symptoms of Fibromyalgia
For Akshita, the pain started with just a backache, but eventually affected “every inch of the body.” She also suffered from acute sensory sensitivity.
“I experienced a burning sensation whenever I wore anything a little tight or if anything rubbed against my skin,” she said while describing how sensory sensitivity felt. Smell and sound used to affect her negatively too.
The following symptoms are common in most fibromyalgia patients-
- Daytime tiredness
- Lack of freshness on getting up
- Pain all over the body
- Anxiety and depression
- Headaches and migraine
“Loud sounds are too much for me. I cannot bear two or three people if they’re simultaneously talking. I’ll just zone out,” explained Akshita. “Even lights can be too much. I cannot focus if iI’m sitting in bright lights. Sometimes different smells cause nausea. These factors overload my sensory system, leading to these effects.”
Akshita also had to deal with brain fog and extreme fatigue. Her physiotherapist suggested she may have fibromyalgia, due to the knots that they found in her back.
Diagnosis of Fibromyalgia
The method of diagnosis of fibromyalgia involved a process of elimination, said Akshita. She visited many clinics and consulted many doctors, till a rheumatologist diagnosed her to have fibromyalgia.
Diagnosis of fibromyalgia is entirely clinical. Doctors ask patients a few questions and examine them and their reports. After ruling out other common conditions, the patient can be diagnosed as a case of fibromyalgia.
Ignorance and Apathy of Other Doctors
Being a doctor herself, the lack of awareness among the doctor community itself is what shocked Akshita the most.
She elaborated, “70% of the doctors have Googled in front of me and about 20% have told me that it’s nothing. They said ‘You’re a doctor and when doctors read about things, they feel like it’s them us.’” Her experience has been invalidated on multiple occasions.
While on many doctor visits, she’s been mocked, chided and shown complete disregard when she pleaded to be taken seriously. One doctor even said, “So every person with any pain comes into the clinic now, has fibromyalgia?”.
Her condition led her to quit multiple jobs, all of which were in the medical sector, due to insensitive seniors.
“I left my last job three or four days back because they were not accommodating,” she said. “They were not giving any emergency leaves because they refused to understand that a young person can have such severity of disease.”
The most common comment is related to her “looking perfectly okay” with no apparent disability.
In one job, she was asked if she suffered from any ailments, and when she answered fibromyalgia, she was barred from even being considered for the role. “I told them to fire me if I was incapable of finishing my duties, but they threw me out of the interview.”
It’s entirely a decision that a doctor has to make. Even qualified doctors sometimes struggle to diagnose fibromyalgia. No patient should diagnose himself/herself as a case on his own.
Also Read: 5 Tips To Cope With Fibromyalgia
Managing and Treating Fibromyalgia
For Akshita, medicines, painkillers and physiotherapy is what keeps her going. She added that the financial cost of the disease can be quite huge, and insurance doesn’t cover it.
Mostly treatment revolves around a few nerve medications, exercise and life style modifications. Patients are encouraged to-
- Maintain a normal wake-sleep cycle.
- Eat a lot of fruits and avoid oily foods.
- Exercise regularly after pain has been controlled by medicines.
- Physical therapy and Yoga is immensely helpful.
Mental Health and Fibromyalgia
The first time she felt the pain was while preparing for a big examination. Her family thus has often said that “you are making excuses to not study” as the pain tends to flare up during phases of stress.
Anxiety and stressful situations have shown the possibility of triggering fibromyalgia flare-ups. Akshita says that this becomes a vicious loop that’s very hard, and almost impossible, to overcome.
Though anyone can get fibromyalgia, most patients are women in their 30s-40s. There are various causes like previous stressful episodes, surgery, any physical or mental trauma etc have been postulated, but till now no consensus has been achieved. Fibromyalgia is more common in patients having anxiety issues and sometimes in those having depression. For some unknown reasons, women are 3 times more likely to get fibromyalgia when compared to men.
The condition has led to several uncomfortable situations in Akshita’s life. She recalls how once during her MBBS classes, she was asked to stand compulsorily for two hours. She asked the teacher to give her some relief as her pain wasn’t permitting her to stand continuously for that long. However, the teacher stubbornly said, “You’re just making excuses, you’re not some princess, you’ll have to stand.”
It led to Akshita starting to cry in front of 200 other students, after the one-and-a-half-hour mark, when her body couldn’t take it anymore.
“I had to go to my emergency that day because I was in so much pain. They gave me injections for pain relief and everything,” she recalled. “And at that time the teacher was like, ‘Okay, I’m sorry. I didn’t know you had this severity of the condition.’ So it’s mostly been like this, people don’t believe it until they see me in severe pain.”
Finding A Community Online
She started an Instagram page have a place to vent and rant. It ended up being “the best decision” for her, as she found a bigger purpose soon after.
The page now has over 6000 followers. Akshita says this page has given her a sense of community and even led her to make new friends who understand her better!
She added how simply being willing to listen has had a major impact on people with similar symptoms she’s met in her life. With patients being dismissed for their pain over and over again, she’s bonded with many over their shared experiences.
Akshita argues that not only should this be considered a major condition, should also count as a valid disability. She is now working towards raising awareness through her page, which includes both her experiences, and whatever she’s studying about the condition through the eyes of her medical knowledge.
These days due to work-life imbalance, we are seeing so many patients with fibromyalgia. It has to be treated through long-term management where patients need to be taken into confidence and share treatment goals over time. But yes, it takes patience from both the doctor’s and the patient’s side.