Fibromyalgia Awareness | Information, Tips, Support, Patient Stories

Dedicated to raise awareness about Fibromyalgia and offer online support. Find fibromyalgia information, news, interviews and tips.

Everyday is Fibromyalgia Awareness Day!

What is Fibromyalgia?

Fibromyalgia (FM or FMS) is defined as:
A chronic disorder characterized by widespread musculo-skeletal pain, fatigue and tenderness in localized areas.

However, it is much more than just all-over-the-body all-the-time pain and hence it is considered as a syndrome. Fibromyalgia brings with it immense problems ranging from fibro fog (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, reduced ability to exercise... to name a ‘few’!
Fibromyalgia Symptoms

If you have Fibromyalgia and find it tough to explain to people what exactly it is, this might help you - How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?
How to explain Fibromyalgia to people?

Fibromyalgia Hurts Poster

Dr Oz on Fibromyalgia symptoms and more

I am a huge fan of Oprah Winfrey and during one of her shows, she introduced Dr Oz. I came across these videos where Dr Oz talks about Fibromyalgia in detail - the symptoms, tender points, misconceptions, foods to avoid and treatments. He shares the evidence that Fibromyalgia is real and talks to several patients.

Dr Oz in these videos help people understand that people with this condition are not lazy, they are seriously suffering from pain and fatigue.

You can watch the videos here.

Video: Joanna Tarley's daily battle with FMS

I came across this video today I think I must share out here. Joanna Tarley from Worthington has been suffering from Fibromyalgia for over thirty years. In this video, she shares how she is unable to do the things she likes to. She understands why some Fibromyalgia patients end up committing suicide. All she wants from people is to understand what Fibromyalgia is all about. Do watch this video:

Why do I have Fibromyalgia?

Often when something really bad happens with us, we say, "Why me?"

For once, I have got an answer!

After I completed graduation with Chemistry as the main subject, I was not sure what to do in life. Hence, I went for post-graduation with my friend Sushmita. And my specialization was Analytical and Medicinal Chemistry. People wondered why would I do that!

After I completed post-graduation, I went for an internship in a leading pharma company. However, in a few months I realized that if I continue my career in this field, it would be a very monotonous job (no offense meant). My friend Lata introduced me to copywriting and I found it very interesting! Excited about the advertising world, I became an ad person. After seven years of studying science! People wondered why would I do that.

Then I moved from mainstream advertising to online communication when Sunisha told me what it is all about. I loved it as it was still a creative field and apparently did not involve late working hours. My friends in mainstream advertising wondered why would I do that!

At the same time, I discovered the wonderful world of blogging. On 13th October, 2004, I wrote my first blog post on the blog I called As I Look at Life. After that, I became an active blogger, made some new friends and created a multitude of blogs. People wondered why would I do that!

Then came Facebook and I learned how it can help in promoting blog, websites and businesses. I became pretty active on Facebook. Some thought I do so much time pass and wondered why would I do that!

I was diagnosed with Fibromyalgia, a condition that changed my life. I cannot work full time as of now, I cannot travel long distances, cook or shop for hours together. I experience excruciating pain 24x7, forget things at times and have fever almost everyday. More importantly, some people think it's all in my head, others think I am just being lazy... yes, I am very much misunderstood. I wonder why would people do that!

When I was diagnosed with it, I thought, WHY ME?

And I got the answer just after a few months of suffering.

I can understand the condition much better as I studied a lot. I can understand the medication, treatment process and side effects as I majored in Analytical and Medicinal Chemistry. I can create stronger communication to raise awareness about Fibromyalgia as I am an advertising person. I can reach out to millions suffering from Fibromyalgia, make their families and friends accept and understand them since I have online communication experience, a blogging platform, a Facebook network and knowledge of social media.

I am the chosen one as I can combine all my experience to raise fibromyalgia awareness and touch the lives of many. If I did not have fibromyalgia, would I have ever thought of doing so? I doubt... actually I wouldn't.

Well, as I always say there’s always something good about something bad.

I know why I have Fibromyalgia and I pledge to do all I can to help out those who also are the chosen ones.

I've Got Fibromyalgia Poster

Why a blog on Fibromyalgia Awareness?

None of the people I know had ever heard about Fibromyalgia. Even I hadn’t until I was diagnosed with it. When I researched about it, I could not find a single Indian website that could give me all the necessary  information. Fibromyalgia Awareness blog is created with a sole purpose – to create awareness about the condition.

During my online research, I realised that fibromyalgia patients across the world face one huge problem – people do not understand and accept what they go through. Often, fibromyalgia patients get to hear harsh words like, “You are so lazy!”. I believe that this attitude is due to lack of awareness. Every person with the condition suffers from a multitude of problems every single day, from 24x7 pain to depression, from poor memory to inability to work full-time... the list is long (click here to know more)! The indifferent attitude of family, friends and colleagues adds to the woes.

With this blog, I intend to spread awareness and help people with fibromyalgia connect with each other. There are fibromyalgia support groups in some countries. I hope to gradually create such platform for people in India.

The blog will include information, news, research updates, stories and tips for people suffering with fibromyalgia and their family members / friends / colleagues.

When the day comes that a person tells someone, “I have fibromyalgia,” and the other person does not ask, “Fibro...what? What is it?”, I would consider this blog to be successful!

I hope you'd join me in spreading the word and creating awareness across the world.

- Anuradha Khanna Pentapalli (Mumbai, India) blogger

"But you don't look sick!"

 One of the worst parts of being a Fibromyalgia patient is the repeated and piercing sound of the cruel words, "But you don't look sick!"

The fact is that while Fibromyalgia patients do not 'look' sick, they experience excruciating pain every single moment of the day... yes you read it right - every single moment. It has been around three years or more now, but I haven't had a single painless day. I haven't seen a book or a picture or a video in my life that shows what pain looks like! How often I feel that I would have rather had cancer or a deformity (okay God, please ignore this!). Not that I think that these are easy to deal with, I have lost many dear ones to cancer including my grandfather who loved me the most, but the thing is that at least people understand how serious these conditions are. And trust me, it matters a lot to the patient, however emotionally strong the person might be.

But Fibromyalgia? The name is generally unheard of... even I had not heard of it until I was diagnosed with the condition.

Once I took a few days leave from work as I could not sit / stand / type for even 15 minutes at a time. The pain and the inflammation is impossible to describe. I returned to work as early as possible only to hear one of my seniors say, "You don't look sick!" Hello!!! If you'd have asked what had happened to me, I would have told you. But most humans have this tendency to jump to conclusions... can't help this syndrome either.

How on earth do you look sick when a condition has something to do with your CNS? When you have difficulty going to sleep... When the side you eventually manage to sleep on hurts all the while you are lying down... When you cry with pain for hours before you fall asleep... When you wake up but can't get out of the bed due to tremendous stiffness and pain... When you struggle to brush your teeth in the morning and find it difficult to filter tea as your hands are unable to hold things properly... When you must take a hot water shower but standing is too painful in the morning... When you sit to work but can't sit continuously, so you stand up, but your feet hurt, so you walk around but your knees hurt... When you have high fever for months together and your condition is taken for granted... When you can't even lift your handbag... When you can't even hold a little baby... When you can't manage your daily chores... When you can't eat the things you feel like having... When you experience hair fall... When you suddenly become super sensitive to light and sound... When you experience unnecessary fatigue... When you forget the smallest of things... When you feel millions of pins hitting you all over the body, all the time... and you try to put on a nice face, not for anyone else but just so that you try to convince yourself that it shall be fine... When you know it won't be... How on earth do you look sick???

People, FIBROMYALGIA PATIENTS DO NOT LOOK SICK and we do not have time or energy to try and look sick. We just manage to do as many chores in a day, more than what our body allows. Just trust a Fibromyalgia person when he / she complains of pain or understand the person even when there's no complaining, coz the pain is always there.


Image: Clicked at Kala Ghoda Arts Festival, Mumbai 

International Fibromyalgia Awareness Day

Fibromyalgia Awareness Day

12th May is observed as the International Fibromyalgia Awareness Day. 
Let's do our bit to spread awareness.

  1. What is Fibromyalgia?
  2. How to pronounce Fibromyalgia?
  3. When is International Fibromyalgia Day

Fibromyalgia awareness and health insurance

Poeple with chronic conditions like fibromyalgia face yet another problem - expenses. The recurring medical bills, doctor's visits and cost of treatment can affect the monthly budget a lot. And since, as until now (May 2012), fibromyalgia officially doesn't fall under the 'disease' classification, insurance companies do not cover these medical expenses.

As the debate about considering fibromyalgia as a disease or a condition continues, one loving husband from New Brunswick, NJ, is trying his best to generate awareness and take some action. I came across this article about John Obenchain and his Alliance Against All Fibromyalgias group. His wife was diagnosed with fibromyalgia over a decade ago. And ever since he is doing everything possible to get fibromyalgia an official recognition as a disease. His support group is an open forum where members are patients, their families, friends, doctors, lawyers and policy makers.

His efforts inspire me and I hope that with this blog, I do my bit towards creating fibromyalgia awareness in India and across the world.

Do join me in this pursuit. Spread the word, touch a life.

Fibromyalgia advice: Ignore annoying people

In the life of a Fibromyalgia patient, there are a lot many people who can be clearly classified as stress-givers. These are the people who do not understand, do not want to understand and do not care what a Fibromyalgia patient goes through. Lack of awareness about the condition is a contributing factor, while some people are just cold blooded.

Look around you, I am sure you can count at least five such people on your fingertips. These could be your colleagues, people who you considered friends and some family members who you believed would understand.

How often you hear the following?
"So what, you are always in pain."
"It's all in your head."
"Why can't you lift your own shopping bags?"
"You don't look sick."
"Can't you at least prepare the morning tea?"
"You are so lazy!"
"Why do you always complain of fever, I think your body is generally warm."
"Stop making excuses."
"Looks like you are always PMSing."

These harsh words add to the stress and depression of a fibromyalgia person and as we all know, worsens the condition.

And then there some so-called family members / friends who are really indifferent. They conveniently forget that you have fibromyalgia and are least interested in knowing anything about it. I won't be surprised if you say some of them do not even now how fibromyalgia is spelled. They expect you to continue with your daily chores, work and social life like any other person. They do not care to ask you how you feel, how is your pain, ever. Do not expect caring words from them and you'll feel better.

Been there, done that, I have learnt a lesson - Keep these people at bay. It is not worth expecting anything from them or explaining them anything. You do not need to put up with them when you are already struggling with fibromyalgia. Simply ignore the stress-givers and do not overexert yourself doing things that you are unable to.

Spend time with good friends, good people.
Just do not expect too much from anyone.
Believe in yourself and take good care of yourself.

I remember Baz Luhrmann's Everybody's Free (To Wear Sunscreen) Lyrics

Listen to the song carefully, every single word in the song guides you through. Save it on your computer / iPod / mobile and whenever you feel low, just listen to it.
Trust me on this... works good for me!

Fibromyalgia and summer heat

Fibromyalgia and scorching heat
Until last year, my fibromyalgia pain used to flare up during winters and monsoon. I would wait for summers to feel a bit better. However, this year, the summer heat has disappointed me. The pain increased and so did the fatigue. And yes, I am keeping myself hydrated, but it is not helping much. And since the last couple of weeks there's a new problem - dry mouth and throat!

I did my research and found that fibromyalgia patients suffer from both cold and heat intolerance. This might be related to the hypersensitivity we experience.

Well, the more we know, the better. All we can so is protect ourselves from extreme temperatures. So if summer is bothering you, here are some measures you can take (please try what makes you feel comfortable):

  1. Keep yourself sufficiently hydrated.
  2. Eat good amount of fruits and veggies
  3. Include curd / yoghurt and whole grains in your meals
  4. Avoid spicy and fried food
  5. Do not over-exert yourself
  6. Try to manage your schedule in a way that you do not need to step out in the afternoon
  7. Cover your head and skin from scorching heat - use an umbrella / scarf and shades
  8. Wear comfortable cotton clothing, avoid body-hugging garments; try cooling vests
  9. Keep a lozenge handy if you step out in the sun and have dry throat / feel dizzy
If there are some tips you need to share with us, please add to the list by posting your comment.

Fibromyalgia is Real Poster

 Poster designed by Sean Simons for Project Fibro.

Guest Post: Understanding Fibromyalgia

Guest post by Deepak Amembal

The other day I received a mail from a blogger friend of mine Anuradha requesting me to do a guest post on  Fibromyalgia. Fortunately for me, she also had given links to learn more about what it is and rightly so because, as millions of others, I too was ignorant of this condition.

This is what she has to say about it, ‘Sometimes, I feel I'd have rather had cancer... at least there's a possibility of cure and people know it's a big disease! More than the excruciating pain caused by Fibromyalgia, the indifference shown by people to the patients of this so-called 'invisible illness' is disheartening. Patients of Fibromyalgia tend to lose their will to fight the disease and my research showed that some even become suicidal!’

Fibromyalgia is a chronic condition. People suffering from fibromyalgia experience severe pain all over the body along with several other symptoms. It is classified as a syndrome, which essentially means that a group of signs, symptoms and characteristics occur together.

There are no specific laboratory tests to diagnose fibromyalgia and hence it is a diagnosis of exclusion. That means the patients have to undergo plenty of tests to rule out other diseases. And if that was not enough, the symptoms and the intensity of pain varies from person to person.

There is one common thing though - fibromyalgia patients have pain all over the body, mostly all the time. They also experience fatigue all the time thus resulting in limited physical activity. Add to it fibro fog -  memory and concentration problems! No wonder then that many people with fibromyalgia end up quitting their jobs or opt for work from home careers.

The worst problem is that due to lack of awareness fibromyalgia is often misunderstood. There is tremendous emotional stress when family, friends, colleagues and even some doctors do not believe that the person is actually very sick.

Some of the common fibromyalgia symptoms include:
  • Morning stiffness
  • Widespread pain
  • Chronic fatigue
  • Anxiety
  • Fibro fog
  • Sleep disorders
  • Depression
  • Irritable bowel syndrome
  • Bladder abnormalities
There is no established cure for fibromyalgia yet. In fact, people with fibromyalgia can never really say they don't have it any more! Moreover,  one can’t say if the condition will improve or worsen with time.

And since every person with fibromyalgia faces a different set of problems, a common treatment does not work for everyone. Fibromyalgia treatment options that can offer some relief are:
  • Prescription drugs
  • Alternative therapies
  • Diet modifications
  • Light exercise, only if possible
  • Stress management
  • Lifestyle changes
It is indeed a rare condition which needs tremendous awareness and understanding from all concerned.

So guys, please do your bit towards understanding and spreading the awareness to ensure we learn to make lives liveable for all those victims of this rare condition called Fibromyalgia.