Fibromyalgia Awareness | Information, Tips, Support, Patient Stories

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

Why should pain be a relative term?

So do you often tend to hold your neck, shoulder or back at your workplace? And then do you adjust your sitting position and continue working nevertheless?

At first this happens few times a month, then few times a week, then almost everyday, and then all the time. But you look around and see many people complaining about their neck, shoulder or back pain. And you think it's a common thing and you need not pay any attention since everyone has similar pain. So you ignore and ignore and ignore. Until the point comes when you literally rush to a doctor with pain so unbearable you hate ignoring it all the time. 

Fibromyalgia and the urgent need for awareness

How do you feel when you have fever for three days in a row? How would you feel when you have it for three months in a row? How do you feel when your head aches for days together. And your knees and feet pain too? And your neck and shoulders too. And your buttocks and wrists too? And you know the pain is not going to go! And in addition to all these 'small' things, you are super fatigued.

You cannot sit in front of the computer for one hour at a stretch! And you keep forgetting things. You do not look sick at all and you are labeled LAZY! But, in reality, you are a victim of Fibromyalgia (FM or FMS).

7 Cheat Codes for Forgetting Pain - 7 Cheat Codes for Forgetting Pain
Fibro fog might make us forget certain things, but when it comes to Fibromyalgia pain and other symptoms... need I mention it is useless. So, while we have accepted the fact that the pain is going to be our forced live-in partner (unless of course some path-breaking research results in curing FMS, cross your fingers please), we can definitely cheat it 'at times'! Alright, you know the 'at times' part of the previous sentence is most important, but don't we always say, "I wish I had at least an hour without pain!" So 'at times' is good... good for us, for now.

So how do we cheat pain and the umpteen symptoms? Well it's no secret that, sooner or later, everybody eventually finds a way to deal with the problems in life. Some fight it back, some move away and some find a smarter alternative. In the case of Fibromyalgia, well we need a good mix of all of these.

Fibromyalgia pain: Titanic movie connection

There's one dialogue in the epic movie Titanic (1997) that spells out the kind of pain we experience all the time.

Leonardo DiCaprio's character in the film Jack Dawson says while saving Rose, "I fell through some thin ice... and I'm telling you, water that cold... like right down there... it hits you like a thousand knives stabbing you all over your body. You can't breathe. You can't think. At least, not about anything but the pain. Which is why I'm not looking forward to jumping in there after you."

So much resemblance, water that cold... like right down there... it's hits just like Fibromyalgia! What do you think?

World Arthritis Day Meet and Fibromyalgia

Raising awareness about Fibromyalgia
There are doctors who quickly hear what you say and in no time start scribbling on the prescription pad.

There are doctors who talk more than what you would like to hear and you wonder if they even heard what you said.

And then, there are doctors who hear you out, understand your condition, offer the right advice and then take a step forward. They care and take an initiative to help out patients in general and not just their patients! I am lucky I found Dr. Shashank Akerkar!

We are always hot!

Many people with Fibromyalgia get fever that stays for weeks and months together. Sometimes it's milder and sometimes higher. Who will believe when we tell them that we have fever today, almost everyday! Been there, done that and learned a lesson - The best part is to stop mentioning it to people who don't care. Especially colleagues at workplace. Unless, we raise so much awareness that everyone knows all about Fibromyalgia.

Coming back to our fever, well, we can't stay on bed all the time. So whenever the fever is lower, try to work as much as your body permits. Soon mild fever at least will not force you to stop some of your daily chores. Had fever for five months continuously. Slowly I got used to milder fever though of course it reduces productivity. What I have also noticed is when I lie on bed for hours together with fever, it somehow tends to shoot up. Sometimes it's unavoidable, but when you can try not to lie down all day. Coz eventually the the pain increases by staying in a single position for long.

Fibromyalgia and Social Security Disability Benefits

If you are from US and are looking to qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits due to a diagnosis of Fibromyalgia, there are some things that you will need to prove to the SSA. Ram Meyyappan from tells here how those with Fibromyalgia can apply for SSDI and SSI benefits. He also shares what are the things we need to prove to SSA and the importance of proper legal representation.

In the United States, those who suffer from Fibromyalgia are among the many individuals who apply for Social Security Disability (SSD) benefits each year.

Social Security Disability (SSD) is a U.S. government program designed to provide financial relief to those who are unable to work due to a disability. You can apply for either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits. SSDI is intended for individuals who are unable to work for at least a year due to their disability and have paid into the Social Security System for 5 out of the last 10 years. SSI, on other hand, is intended for those who do not have the necessary work history.

The First Rainbow!

My blogger friend Corinne recently invited me to write a guest post on Fibromyalgia for her blog Everyday Gyaan. The post is an attempt to help us raise awareness and I was overwhelmed with the response. Thanks to her blog, the post has reached many who had not heard about the condition and some who already are in the same boat as us. I take this opportunity to thank Corinne to help us make others understand what we go through. Interestingly, the post was also picked as BlogAdda’s Spicy Saturday Picks – Aug. 25, ’12

Do read the story "There’s A Rainbow Somewhere!" here and let's spread the word!

The choice is always ours!

She had been postponing it for a while but then she had to. She finally walked up to the laundry bag and picked some clothes that needed washing. A few shirts, a few dresses and some jeans, each weighing around 1-3 kg (yes, you read it right)!

One by one, she dropped them into the 6.5 kg washing machine and set the program to Fuzzy Wash. She knew it's better to wash the gentle and tough clothes separately but another round of washing? She didn't have all that energy and patience to wait. She would rather skip it and prefer the shortcut. After all, she had to even pick the partly wet clothes (each would then weigh around 2-6 kg) and then put them for drying outside on the clothesline.

And God forbid if it started raining, she would have to again carry the heavy clothes to put them for drying inside. That would mean climbing onto the little stool several times and reaching out for the clothesline fitted towards the ceiling. A shortcut made sense. And she was glad that this time no soaking was required!

She hated soaking. It had been three years since she was diagnosed with the life-altering condition. She was soaked in pain from head to toe. So much so, she sometimes felt good that hair and nails don't sense pain. Fever was a daily thing and so was the morning stiffness. She was drenched in fatigue all the time... even when she woke up in the morning, even after she took a hot water bath, even after she slept during the day!

How she used to be a water person! When she was younger, she would spend a long time in the shower, insist on washing the dishes, mopping the floor and washing the clothes. And when her family bought their first washing machine, she would always take the initiative to connect it to the tap and switch on that power button. She would love to watch the clothes spin and swirl though the glass window of the top load machine. The beep beep beep of the machine after some 50 minutes used to be her favourite part. She would immediately pick the partly wet clothes, each weighing around 0.50 to 1 kg, and put them for drying. She loved to climb up and down the little stool to stretch and reach out to the clothesline.

However, now the clothes seemed to be double the weight of what they were. She had great difficulty lifting things. She had great difficulty doing anything and everything, including sleeping. She had become quite impatient as well.

But she had decided that she won't compromise, that she won't allow Fibromyalgia soak her forever. She couldn't wait for things to be fine as she knew there's no cure for Fibromyalgia. She had to look for smarter alternatives. Like a part-time job, like typing on a touchpad, like using a memory foam mattress, like using a detergent that removed the toughest of stains without soaking... she was thankful to Surf Excel Matic for the little help it offered... she had made a good choice!

Life always throws tough challenges at us
The choice is always ours -
Get soaked in stains or wipe the slate clean!

This post is an entry for the Surf Excel Matic #SoakNoMore Contest.
If you like the post, do vote for it on IndiBlogger. Or share it on Facebook, Twitter, Mail, et cetera, et cetera... you have a choice ;)

Height of Forgetfulness

I had such a cool poster idea yesterday, but when I sat to create it today, I was so blank! Blame it on Fibro Fog!

Fibromyalgia: Survey results and compassion fatigue

A latest article on the website of Institute for Integrated Healthcare Studies focuses on something called compassion fatigue. The article highlights how massage therapists and practitioners dealing with Fibromyalgia patients can develop compassion fatigue as everyday they tend to so many patients and listen to their misery. While these experts treat and counsel the patients, it can affect them if they do not take of their own health. here's an excerpt from the article:

"Based on Eagan's description of compassion fatigue, it is easy to see how previously caring therapists could evolve towards apathy. Practicing good self-care is where the hard work of maintaining compassion lies."

These caregivers are the strength and support system of people with Fibromyalgia. I wonder how we would cope if these helpful therapists and practitioners develop apathy. After all, these lovely people are the ones who understand Fibromyalgia, the chronic invisible illness that has no specific lab tests for diagnosis and is misunderstood by many!

Do check out this article written by Nicole Cutler, L.Ac. for Institute for Integrated Healthcare Studies. It includes:
  1. Findings of an online survey courtesy Synovate Healthcare, National Fibromyalgia Association, the American Pain Foundation, and Pfizer Inc. 
  2. Some origins of the Fibromyalgia Syndrome (FMS).
  3. Information on Compassion Fatigue.
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Fibromyalgia patients and their families come across hundreds of articles on the web. Some are too long, some repeat the same old story while others are missed and might contain crucial information, news or findings. Shortlisting and sharing important articles on Fibromyalgia via the Stay Informed section of this blog. Take Care!

You can never win over me

This one's for you Fibromyalgia:

You come uninvited
when I have work

You accompany  me
when I meet my friends

You distract me
when I try to focus

You keep me awake
when I need sweet dreams

You remember me
when I forget everything

You are still with me
when I am not interested

But, you can never win over me...
I'll be so over with you!

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.

Fibromyalgia Quotes: The best or the worst?

"The best thing about Fibromyalgia is that we don't look sick.
Incidentally, that's also the worst thing!"

Fibromyalgia: Meaning of the word

The word Fibromyalgia is primarily derived from Greek and Latin.Consider Fibro + Myos + Algos. 

Fibro is New Latin for Fibrous Tissue
Myos is Greek for Muscle
Algos is Greek for Pain

You may also like to read:
What is Fibromyalgia?
How to pronounce Fibromyalgia?

How to pronounce Fibromyalgia?

Not many have heard about Fibromyalgia. But obviously, not many know how to pronounce it. Here’s how you break the word to pronounce it correctly: Fibro + Myal + Gia 

You may also like to read:
What is Fibromyalgia?
Fibromyalgia: Meaning of the word

Fibromyalgia expert Dr Daniel Clauw's findings

I came across this Ottawa Conference Report that has Fibromyalgia expert Dr Daniel Clauw's take on Fibromyalgia and the CFSness of the chronic illness. The report might seem too long to read but Dr Clauw's detailed insights and observations make it a must-read for anyone who has Fibromyalgia and anyone who knows someone with the condition.

In this report, Dr Daniel Clauw focuses on:
  • Central Pain and CFS (Chronic Fatigue Syndrome) connection
  • How an Anti-Depressant helps
  • The genetic implications
  • The stress component
  • What effects memory and concentration
  • Medication, decline of opioid and alternative treatments
  • The future in FM

About Dr Clauw: He is a Professor of Anesthesiology and Medicine (in the Division of Rheumatology) at the University of Michigan, USA.

Fibromyalgia Tip No. 2 Poster: Fibro Fog

Tend to forget things due to Fibro Fog? Maintain a diary or use your mobile phone to keep a list of things to do handy. Or simply use post-its!

Fibromyalgia Tip No. 1 Poster: Friends

Fibromyalgia patients can feel considerably better when they stay away from any kind of stress. The happier you are, the better you'd feel. And what could be better than spending good times with your good friends, especially the ones who understand what you go through!

Fibromyalgia Tender Points Poster

Fibromyalgia Tender Points
People with Fibromyalgia experience pain in at least 11 of the 18 tender points shown in the image above.

One good thing about Fibrofog

Many Fibromyalgia patients experience Fibrofog / cognitive dysfunction. This means they have problems with memory and concentration.

We sometimes forget the smallest of things. Like the other day I went out to buy a raw mango that I really wanted to use in cooking. Now, I also picked up 1 kg potatoes and placed the raw mango in the same bag. The weight of the shopping bag, due to my shoulder and elbow pain, was bothering me. So when I reached home I immediately kept it where I keep potatoes in the kitchen.

For the next one week I felt like using raw mango in some of my preparations but I thought I need to step out and purchase one. And every time I stepped out, I forgot to get one.

Then last weekend, when I decided to cook potatoes, I found the raw mango that had almost ripened! Now that the mango season has just started in India and the mangoes are very expensive at the start of the season, this was a real treat!

As I say, "There's something good about something bad!"
Fibrofog helps ripening mangoes ;)

Something good about something bad

There’s always something good about something bad
Getting diagnosed with a terrible disease
at a young age for instance

You know early on how important is life
and its smallest joys that you never acknowledged
You know early on why health means everything
and that earning wealth is not everything
You know early on that the health is wealth proverb
you ignored all these years has a lot deeper meaning

See, there’s always something good about something bad 
Getting diagnosed with a terrible disease 
at a young age for instance 

You discover that some of your family and friends
aren’t quite the ones who would be there with you in tough times
You also discover that those who were remote acquaintances
are the ones who give you strength and support
Those friends from the past or the recent social networking sites
are the ones who give you the will to survive

See, there’s always something good about something bad 
Getting diagnosed with a terrible disease 
at a young age for instance 

You become wiser like you never thought
and eventually stop worrying about what the world would say
You don’t unnecessarily bother about those so-called near ones
and feel happy that you have identified the real dear ones
You learn that life as you know is the life around
the people who define you, the people who really matter

See, there’s always something good about something bad 
Getting diagnosed with a terrible disease 
has its own hidden meaning 

Originally written on As I look at life

Fibromyalgia and Cooking: Part 1

Fibromyalgia patients can face a lot of difficulty when it comes to cooking. The kind and level of  difficulty varies from person to person. While some are unable to stand while preparing the dish, most struggle to hold the knife and apply pressure while chopping vegetables / knead the dough.

A food processor surely is a boon, but sometimes you want to avoid it may be because the quantity is less or you don't want to end up cleaning the food processor jars and blades since that too can be tough with Fibromyalgia.

So, I will try and post some easy recipes and cooking tips regularly. Of course, nothing's better if you have a someone at home to manage it all for you. But what if cooking has to be your responsibility for some or the other reason?

Here are some basic tips to help you manage your kitchen with ease:
  1. Since mornings are difficult: Morning stiffness makes even a simple task of preparing tea tough for a Fibromyalgia patient. It is a good idea to clean / chop the veggies or knead the dough (if you can) the previous day, sometime in late afternoon / evening whenever the pain and stiffness is lesser. If you need to leave for work early and also carry lunch, cook at the night before and refrigerate.
  2. Know what you can cook easily: Opt for easier and fast (preferably healthy) recipes when the pain is intense. Keep a list of recipes handy so you do not stress out thinking what to cook when you are unable to.
  3. Plan the preparation: Plan the preparation before you enter the kitchen. E.g. Keep the rice for cooking and meanwhile chop the veggies. Time it in advance so you need not stand for long.
  4. Take breaks: If you plan to prepare a full meal or something that involves a long procedure, take small breaks in between. If your legs hurt, sit for 5-10 minutes at intervals and then continue.
  5. Shopping for ingredients: Stock up the ingredients that you use regularly. Do not carry heavy shopping bags if the shoulders / hands hurt. Divide the shopping in a way that you do not end up carrying kilos of grains and fruits at a time. Keep the shopping list handy to beat fibrofog.
  6. Post-its help: This one works for me and I am sure it will help you too. Fibrofog often gives me a tough time. So whenever I remember I need to buy something, I write it right then on a post-it on the refrigerator. This helps as then you need not stroll in the supermarket struggling to remember what else you had to buy. Why add to the fatigue, stress and pain?
I assure you that I will try and post as many solutions as possible in the upcoming posts on this site. I have compiled some of my recipes on my Vegetarian Recipe blog. If you like Indian food, these might help. I will soon compile a list of recipes that you'd find easier to cook.

Take good care of yourself

Stress multiplies Fibromyalgia pain

I don't know if there is a sure-shot evidence of it. Neither am I any authority to prove it. But this is my own experience. If I am very stressed / mad about anything, if someone emotionally hurts me a lot, that night and the next couple of days are super painful for me. It has always happened with me. Falling asleep that night and waking up the next morning become the most difficult tasks. And then, I wake up with severe inflammatory pain, spasm and stiffness.

Not that I don't have morning stiffness and 24x7 pain every single day, but in stressful conditions, it becomes more than unbearable. And then, it's a full circle. The pain increases your stress - the stress further increases your pain. And things become worse when on your super painful days people around you expect you to do all the endless household chores and office work with equal speed and efficiency. The taunts indicating that you are being simply lazy hurt more than the pain Fibromyalgia has to offer you.

I know the solution... I know how I can get some relief. But for some reason, I am unable to take an action. I know that those few days that I am away from home and the daily routine are the less painful ones. I know that I don't even realize (for a few hours) that I am in pain the day I spend some time with my good friends. I know I need a drastic lifestyle change.

Have you experienced the same? Do you think that a lifestyle change might help Fibromyalgia patients to a certain extent? Do you think stress makes things complicated and you should try and stay away from those who stress you out?

- Guest post by Ana Hope

10 Tips to work when you have Fibromyalgia

Working with Fibromyalgia
Take a break!

Only a Fibromyalgia patient can truly understand the kind of pain you go through when you decide to continue working full time / part time. However, there are ways to feel better and manage your work schedule.

Here are some tips (which I follow) to reduce the pain:
  1. Get up from your chair and walk around / stand for a while (5-10 mins) after every hour. Yes, you might feel a bit embarrassed to take regular breaks at the beginning. But simply stepping out for one round would do you only good and you will be able to work better when you return to your desk.
  2. Stretch at intervals.
  3. Ensure your chair and computer are at the right level. Maintain correct and comfortable posture.
  4. Try to get sufficient sleep at night.
  5. Don't over-exert yourself on weekends.
  6. Shopping is a real stress-buster (works for me).
  7. Do follow the exercise regime suggested by your doctor religiously.
  8. Stay in touch with friends -  the more you feel better at mind, the lesser pain you feel.
  9. Eat well.
  10. Don't indulge in activities that you think might worsen your condition. If you think you can't lift heavy stuff, don't do it.
Take good care of yourself

Fever everyday... for months together

Fibromyalgia and Fever.
Monsoon will arrive soon. While a few years ago it meant the arrival of my favourite season, now it doesn't please me as much. While the aroma of the wet soil and the raindrops on the window still bring me a smile, the considerable fall in temperature causes super immense pain all over the body. And the fever sets in... again. Over the last year, the fever has lasted once for around five months in a row, then for two months and this time it's been for around two weeks already!

The fever for some reason multiplies the pain and agony. Lying down for a longer time does no good in any case and I feel all the more sick. So I try and keep myself occupied.

Have learned something important in all this:
Don't expect the world to care for you,
don't expect all your near ones to be there for you 

The people who you thought would care for you the most
take you for granted and cause maximum emotional torture

There's just one person whose help matters the most
And only that one person knows exactly what you go though

You will survive with the help of that one person
You will be good with the help of that one person

And that one person is YOU
Take good care of yourself
coz if you won't, who will?


Sunrise or Sunset? It's the way you look at it!

Fibromyalgia Hope

Fibromyalgia pain sure is excruciating. Stress increases the agony, and the agony leads to stress... it is a vicious cycle. But it is in our hands to not get stressed out due to Fibromyalgia.

Sure it is easier said than done. But I am suffering from Fibromyalgia and I know exactly how it is. The moment you start feeling that you can't take it anymore, you are letting the condition worsen. When the pain becomes so unbearable that you can't think of anything else, just indulge in some mild activity that relaxes you instead of thinking more about the suffering. Read a funny book, watch a comedy show, go to a spa orr simply take a nice hot water bath.

Just do not look at Fibromyalgia as the end of everything. Find out something positive about it. There's definitely at least one thing you can do when you are unable to do so many things. Like for me, had I not had Fibromyalgia, I might not have started an awareness drive. I started reading on it day after day, and I know what I must do now. I look at it as a purpose to do something new.... how about you?