Aditi Gupta, 23 from Gorakhpur, Uttar Pradesh has been in pain for the last 5 years, battling an invisible condition called Fibromyalgia. She still has not found a cure, but has not given up hope – yet.
I suffer from a chronic pain illness called Fibromyalgia. It is an invisible and an incurable condition causes widespread muscle pain, migraine, stiffness, fatigue, morning sickness, insomnia, restless legs, depression and several other symptoms.
First Symptoms
I was diagnosed about 3.5 years ago while the symptoms started 4.5 years ago. I was a perfectly healthy person until the age of 19, when one evening after my classes, I experienced severe stomach ache which kept on progressing. I was given several injections the same night and for many days to come with no relief.
I went to Bangalore for a complete body check up when the pain symptoms started spreading to my upper back and chest as well. Doctors at Apollo and Manipal conducted various tests such as CT Scan, MRI, Ultrasound, blood and urine etc. and in the end found everything about my body normal.
They said it's probably just in my head and I should go back and focus on my studies. I came back to college. Being a topper all my life, it was only natural that my studies were my priority. Just when my mid term exams started, I experienced another shooting pain in the head, I was again taken to a local doctor in Warangal, where I was studying. The doctors again conducted tests, and they again said it's all in my head. By this time, I was in excruciating pain all over my body with no explanation by doctors.
I managed to appear for my exams that semester, and then went back home only to find everyone telling me it's all just in my head.
Self Diagnosis
I started researching the internet and somehow I stumbled upon this word called fibromyalgia, and I knew that was it. But I had no actual diagnosis.
That was the time when I wasn't able to pick myself up from bed every morning, I began feeling like I was being stabbed in different parts of my body with a knife, my family was away from me and whenever I called them to tell that I am not okay, they kept emphasising to stop complaining and start living. After all I looked alright to even them.
Finally ..a Doctor's Diagnosis
Next thing I know I could not sleep due to severe pain, nor could I attend classes. Doctors and family continuously telling me that it's all in my head filled me with self doubt. With that, in addition to my medical condition that I was going through, I started getting suicidal thoughts.
In the summer after I finished my academic year, I was so frustrated with doctors telling me it's nothing, I wrote down all my symptoms on MS Word and got it printed. On my first visit to SGPGI Lucknow, I showed the printout to the doctor and he smiled, and said it's Fibromyalgia.
My mom went with me on that visit, and the doctor asked her if she had any similar symptoms. She said she has arthritis, the doctor physically examined her limbs and joints etc and concluded that my mother also suffered from fibromyalgia.
Twenty long years, she kept thinking she had arthritis while it was Fibromyalgia in reality.
Medication
As my Calcium, Vitamin D and haemoglobin levels were normal, they straight away prescribed me pregablin, one of the three official medicines given for fibromyalgia. I took it for 3 months without any relief. I came back to college and visited another rheumatologist in Vijayawada. He prescribed me Duloxetine in addition to pregabalin, With this new medicine, I experienced terrible side effects like tremors, vomiting, itching etc.
Self Help
I kind of became my own doctor, researched the internet on what other treatment options exist for the disease and what other medicines are being prescribed by doctors around the globe. I found many prescriptions, joined many support groups, asked them what medicines were helping patients in the US, as it's more common there than in India. I did what they were doing again with no real success.
I continued my quest to get better. I visited the Delhi Pain Management Centre in Delhi where I was given Tramadol and Fludac, which also failed to help me.
I went for acupuncture, some home remedies, massage therapy, yoga, CBT etc. But my situation just continued getting worse, no matter what I did.
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My family wasn't still supportive. They continued holding me responsible for my condition. They felt I probably needed to lose weight that I had actually put on because of the medication. I was slipping into a depression.
Struggling with Fibromyalgia: Please join the Fibromyalgia Support Community
The Emotional Struggle
I tried to focus more on getting better than trying to make my family understand what I was going through is real. My family doctor even went to the extent of saying that the neck pain is due to excess usage of mobile phones. And I did not even possess a smartphone then! I used to cry myself to sleep every night for years. There were days spent in bed, and there was a point when I was crawling to get to the bathroom because of the intensity of pain. During my struggle to find a cure, something else transpired which worsened my condition further. My parents were made to think I was possesed by some spirit, and so I was taken to these so-called experts who drive spirits away. I was beaten to death by those Babas and tantriks because they believed that's how the spirit will go away, I became so weak and the trauma that I went through was immense.
Doctors at NIMHANS, Bangalore, conceded that my emotional trauma had indeed aggravated my problem.
Read: It took two years to get a Fibromyalgia diagnosis
A wish for awareness and cure
It has now been almost 5 years that I have been trying to alleviate my pain and failing. I am now officially an immobile person living in a 60 year old body, half dead with pain.
I know there is no cure, and fibromyalgia is not yet well understood by doctors. The disease itself was only officially recognised in the year 2007
There is the National Fibromyalgia Association in the US, and yet they still don’t even know whether it’s a neurological disease or a physiological one, let alone finding a cure for it!
What is particularly perplexing is when the test reports of a person with fibromyalgia emerge clean. Unless the cause can be determined, a cure will be difficult to come upon. I have gone from a chiropractor to a healer, physiotherapist to a neurologist, rheumatologist to a psychiatrist and many other people and alternative treatments - all with zero success.
My legs feel like being bitten by thousand snakes, head being beaten up by rods continuously, body feeling very near to death with the cruel monstrous pain. But stlll I have the patience to move on, live one more day and hope some more.
My life has changed but I am still hopeful, I haven't yet given up. Currently I am an avid-reader and a blogger of Calm Insights, where I write to motivate others and also to raise awareness about invisible illnesses through my stories. Y
All I say to all of those recently diagnosed or others who have been living with it for years, is that once Tuberculosis was a new disease, there was no cure. But then they found one. Exactly the same way there will be a cure for Fibromyalgia too.
I just wish it is not too late, before so many more lives get trampled upon by its deadly impact.
