Fibromyalgia Awareness | Information, Tips, Support, Patient Stories

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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?