Why I Graduated from Being a Fibromyalgia Patient to an Awareness Activist

fibro

 

Fibromyalgia patients fight two battles – Their illness and People’s Indifference.

Winning the former depends on how fast the scientific research progresses and winning the latter depends on peoples’ mindsets, which unfortunately are more complicated to change!

A majority of Fibromyalgia warriors, as I would like to call them, struggle every single minute of their life with debilitating pain and numerous symptoms. And as if this battle is not enough, they have to fight another battle – explaining to people what fibromyalgia is all about and convincing them that they indeed are unwell. It’s ironic, isn’t it?

For me, like many Fibromyalgia warriors, it all started with excruciating weird pain all over the body. Sometimes, the pain would be like a shooting pain at certain ‘tender points’ as they call it. It would make me go crazy getting up abruptly from bed or my workstation and feeling completely helpless. I would cry for hours, day and night. It was as if suddenly all my nerves were acting up. As if I got a super power that made me sense all my nerves… I could sense the slightest sounds from far away distances (that’s called hypersensitivity), only that it didn’t make me any powerful!

Then started the journey of trying to figure out what exactly is wrong with me. I went from one General Practitioner (GP) to another, from one orthopedic doctor to another for over a year. But the symptoms would not decrease. I was misdiagnosed with Seronegative Spondyloarthropathy. Yes, most fibromyalgia patients go through a series of misdiagnosis. I had to quit my successful full time content head job and struggle to find some part time options. I was also at home for quite some time and did a lot of reading on the symptoms. Meanwhile, there was no improvement at all and I figured out I should rather consult a good Rheumatologist. That was when I came across Dr. Shashank Akerkar’s (Mumbai, India) listing and consulted him. It did not take him much time to understand that I had Fibromyalgia.

While his understanding of the syndrome and treatment made my condition much better, I started reading more about it. I found that in India, people have not heard about the condition. Also, worldwide, there is lack of awareness. More than anything, since we do not look sick and since this is not a ‘popular’ illness, patients are subjected to indifference – family and friends not believing them and a lot of emotional trauma in addition to the umpteen symptoms of Fibromyalgia.

So I decided to do something about it. I started a blog Fibromyalgia Awareness and a corresponding Facebook page that has now become an online support group to over 7600 people today. Now, raising awareness has become one of the purpose of my life, perhaps that’s why I got this illness in the first place, as I might have been destined to do so!

With my own illness and the discussions with these many people, I have realized that we have a long way to go to wipe the ignorance about the condition and to help people get the right kind of timely treatment. Here are a few points we must ponder upon and do something about:

  1. Identifying the symptoms: Widespread body pain, fibro fog and cognitive dysfunction (in simple terms problems with memory and concentration), stiffness, depression and anxiety to hypersensitivity to light, heat and sound, dryness in mouth, chronic fatigue, sleep disorders, bowel and bladder abnormalities. Pain in 11 out of 18 defined tender points.
  2. Identifying the specialist: A rheumatologist or a neurologist or a GP who understands fibromyalgia. There are many doctors who still tell patients, “It’s all in your head!” Simply avoid such doctors and take a second opinion.
  3. Awareness: Patients will have a slightly better life if at least people understood them. So reading and talking about Fibromyalgia is most crucial.
  4. More focus on research: I hope that governments and organizations invest / sponsor research to find a cure for fibromyalgia.

 

And while all this will take time, I hope to do everything in my capability to raise awareness and continue with my online support group where fibromyalgia warriors are most welcome to talk, give and take advice, get / share their views and helpful information. And do take the #FibromyalgiaPalmChallenge I started recently to together raise awareness.

 

– Anuradha Khanna Pentapalli,

Founder, www.fibromyalgiaawareness.com

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