Fibromyalgia Awareness | Information, Tips, Support, Patient Stories: 2014

Fibromyalgia Palm Challenge - Photo Album A

This is a collage of the palm photos submitted by those whose names begin with the letter A.

Fibromyalgia Palm Challenge is an initiative to raise awareness about Fibromyalgia. I hope that each one of you watching this video take the challenge and tag as many people as possible to make this 'Invisible Illness' Visible to the world.

You can read all about fibromyalgia on this website.Submit your photos on our Facebook page.
You can write to me on contact@fibromyalgiaawareness.com

-Anuradha Khanna Pentapalli, Creator of #fibromyalgiapalmchallenge

Patient Solidarity Day Event in Mumbai

I am glad to get the opportunity to speak on the occasion of Patient Solidarity Day, thanks to Mr Bejon Misra, and put forth my points to improve healthcare in India.

For the first time, patients came together in India to demand access and universal health coverage on the occasion of Patient Solidarity Day that was observed on 9th December 2014 in Mumbai (and 6th December in Delhi).

Trust me, few years from now, healthcare will be much much better as we had a long discussion complete with awesome suggestions by all stakeholders, and planned next steps to make things better for all patients across India.

Patient Solidarity Day on 6 December 2014

What is Patient Solidarity Day?

Imagine the power of an initiative when patients from across the world come together in solidarity to make their voice heard and to support each other.

Imagine a day when patients, health activists and organisations unite to ensure that every single person in the world has fair and impartial access to quality healthcare.

That day has arrived!

The day when we all unite for universal health coverage under the theme: “One voice, United, Universal”.

Patient Solidarity Day is observed on 6 December 2014 across the world. I am glad that this year we have a few events in India as well.

Read more about this day here.

Back here, in India, some of us are coming together at two separate events in Delhi and Mumbai. More about it in my next post. Meanwhile, so read all about Patient Solidarity Day learn about little gestures or big splashes you can do to help stand united and amplify the patient voice!

Online activity for Fibromyalgia on patient Solidarity Day:
To do our bit on this day, we are asking patients and organisations worldwide to do a little Facebook Sharing activity via our #FibromyalgiaPalmChallenge to support fibromyalgia patients.

Visit the #FibromyalgiaPalmChallenge official album. Choose any random Palm photo of a fellow fibro fighter, share it on your timeline and tag your Facebook friends to take the challenge.
Remember to give credit to the person who's photo you share by saying, for example:
"(XYZ) too has taken the #FibromyalgiaPalmChallenge to raise awareness. How about you?"

Use the hashtags:
#PSD2014 and #FibromyalgiaPalmChallenge

Oops we entered the Time Machine!

So it's really tough to explain when people ask how does Fibromyalgia affect us or how it is exactly like.
This is what I think is one way of explaining:

NO MORE SUICIDES: Talk when you feel low

REMEMBER TO TALK: We and many support groups are here for you.

The recent news of suicide of Jacqueline Ratcliff and her husband John, UK, has given us goosebumps. We wish it could be undone. We wish things got better for them. We understand a bit what they must be going through.

Don't insult those who commit Suicide

There are times when people with chronic illnesses like Fibromyalgia feel so low, so helpless that they think of taking such steps. We hope and pray no more suicides happen.

At the same time, REMEMBER that it is that very moment / days when you need to pull all your courage to fight the thought. You have been fighting the pain and all the symptoms every single day. You have the strength to fight that thought that tends to often overpower us.

TALK to friends and family. Right then.
Talk to a DOCTOR.
Talk to your SUPPORT GROUP.
If there is a Support group in your area, please JOIN.

No one deserves the pain of Fibromyalgia and other chronic illnesses. No one deserves to die like this.

Please join us in PRAYING that the souls of Jacqueline Ratcliff and her husband John Rest In Peace.

Also, do read the post: Don't insult those who commit Suicide

The story behind the Fibromyalgia Palm Challenge

The #fibromyalgiapalmchallenge is the brainchild of Anuradha Khanna Pentapalli, from India, who runs the Fibromyalgia Awareness Blog and a corresponding Facebook Page.

The challenge, launched on 5th November 2014, is shaping up due to the efforts of the Fibromyalgia Awareness Facebook support group, fibromyalgia warriors worldwide and the people they are tagging.
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It was after the popularity of the Ice Bucket Challenge that I thought we should do a similar but easier challenge to raise awareness about fibromyalgia. Around the same time, a few members of my page suggested why not do a similar challenge for fibromyalgia. Yes, it did take me quite some time to conceptualise how to go about it in a manner that the purpose is not lost.

Eventually I came up with #fibromyalgiapalmchallenge and launched it on 5th November 2014 from India.

I decided to focus on the following:

The challenge name must have the term "Fibromyalgia" in it.
It should be easier to take and people who are not comfortable sharing their face photos should not face a problem. Hence, photos of palms instead of videos.
It MUST raise awareness about fibromyalgia. People must read what it is all about before taking the challenge. This is very important for the world to understand the condition.
It should not cause any harm. Hence, people who wished to take the challenge but had ink allergies were suggested writing on a paper / adding text on the computer with their palm
All the photos must appear in one common album to appreciate the efforts of those who took the challenge (Of course, this resulted in backend workload but we are working on it).

THE TEAM

I would like to thank Pete Shields and Beth Brown from US who helped me take it forward. Later, Swati Agrawal from India and Jenny Patriksson from US joined us as an admin to help us with the mammoth amount of work.

A special mention to Virginie Bellamy from France who traced the person who was taking all the credit by creating posters out of our album, removing our logo and promoting the challenge as his idea. She also gave us the idea of translating the challenge in different languages and helped us with French.

Do share!

Do join our Facebook page
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NEXT POST: The challenges faced in the challenge... Coming soon...

Who created the Fibromyalgia Palm Challenge? When?

The #fibromyalgiapalmchallenge is the brainchild of Anuradha Khanna Pentapalli from India.

The challenge, launched on 5th November 2014, is shaping up due to the efforts of the Fibromyalgia Awareness Facebook support group (https://www.facebook.com/fibromyalgiaawarenesspage) team that includes admins Pete Shields, Beth Brown an Swati Agrawal.

The need for this post: It's a shame that some pages and blogs are lifting the idea, replacing our logo from the posters and promoting it as their own idea. People suffering with fibromyalgia have created this challenge and are working day and night to make it big. Credit must be given when due, isn't it?

Also Read:

The story behind the Fibromyalgia Palm Challenge

Do share!

Do join our Facebook page: https://www.facebook.com/fibromyalgiaawarenesspage - See more at: http://www.fibromyalgiaawareness.com/#sthash.TIWeajvG.dpuf

The Fibromyalgia Palm Challenge Photo Album

The #fibromyalgiapalmchallenge is gaining momentum with more and more people taking the challenge and tagging their friends everyday.

Here's the link to the album of some of the photos submitted. We aim to include all photos step by step. The mammoth task sure is taking time with several pending photos, but we will ensure that no photo submitted for the Fibromyalgia Palm Challenge is missed.

Announcing Fibromyalgia Palm Challenge to raise awareness

CLICK A PIC AND BRING ABOUT A CHANGE!

I have created the Fibromyalgia Palm Challenge with a purpose to make the world understand Fibromyalgia (FMS) and the people suffering from it, and to help people get diagnosed in time. People with this syndrome suffer with everything from 24x7 chronic pain to hypersensitivities, from cognitive dysfunction to inability to lead a normal life, but more importantly, they suffer from lack of awareness. The most painful thing is to explain to people what they are going through. Since, people with this chronic debilitating illness do not look sick, they end up facing lot of indifference and harsh comments.

With this little challenge, I aim to raise awareness on a larger scale. There are no donations involved and the steps are really simple. People taking the challenge just need to read and understand what Fibromyalgia is all about. Not only will it result in a better understanding of the syndrome, it will hopefully bring relief to millions of fibromyalgia patients who are tired of explaining to people what they are going through.

I hope you join me in this campaign and use your social media presence to help us raise awareness.

How you can help by taking the challenge:

Click your Palm photos with the handwritten text on Facebook, Twitter, Instagram, Pinterest, Google Plus, etc.
Tag as many people / companies as possible.
If you know a famous person / celebrity who you think will be willing to take the challenge and tag others, it would be the best thing. We all know how a celebrity can add momentum to a social cause campaign!
Blog about it.
If you are / know a journalist / reporter, please help us get the word out.
Talk about it.

Please take this challenge, it will just take a little bit of your time and you can bring a whole lot of difference!

Do give our Facebook Page a Like!

Letter From Yet Another Fibromyalgia Fighter

Sleepless in Seattle and around the world!

What helps when you are unable to sleep because of pain?
So, most of our members commented on the Facebook page that they could not sleep last night (or this night as per the time zone). I thought of compiling tips that help us in such times in a blog post so that we all can benefit from it during those impossible nights. So who all are keen to share their tips now? Your suggestions on the comments / Facebook page post will be posted out here with your name.

Tips to feel better when sleeplessness strikes with pain:
Reading a book helps me at times, if not with sleep it at least takes my mind off pain for a few minutes.
~Anuradha, Navi Mumbai, India

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Picture courtesy: Claudia Hana

1-Regular sleep schedule: has helped me fight insomnia overtime. Yes, you do get it at times when you worry or when I have my periods but I just roll with it instead of fighting it. I started at 2am, then worked my way to 15min earlier until I reached 11pm which became pretty regular now.
2-Make sure to go to the washroom just before bed (see funny picture I made on the subject because it's happened too many times)
3-Stop all chores, activities and thinking 1hour before bed
4-Sleep medicine: caution about clonazepam* Please read about withdrawal symptoms before ever taking this on... I've been on it too long and I would never do it again if I had known. It is not mentioned in side-effects. For nights that really are bad, I use Gravol or allergy pill but really stick to very very bad nights.
5-Mindfulness meditation or guided meditation while falling asleep
6-Heating blanket in winter and good sunlight blocking curtains
~Claudia Hana

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My heating pad! I'm addicted to it. It doesn't always help, but I don't think I could do without it.
~Beth

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Trazadone 100mg at bedtime, helps me a lot.
~Cherie Hall Mansfield

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Recently my Dr. Felt is was OK to stop All my pain meds lol distract yourself I was told. So now I'm learning to do that ugh grrr crochet, reading, old black n White movies
~Carrie Gustafson

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Heated under blanket, helps to get you over !! But in hot weather?
~Dee McCloud
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I have fibro in my hips & legs(since I was a child) & I take Lyrica on a daily basis, but when I have a really bad flare, I use a heating blanket that helps sometimes.
~June Shook

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Sometimes if I sit up and use my heating pad it helps.
~Katina Guy Edwards

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I rub my body all over with any kind of muscle relaxing cream..make a pot of tea with some cayenne pepper and sweat it out... ~Princess Tiny Neferua

Don't insult those who commit Suicide

SUICIDE and all the debate!

It's easy to condemn those who commit Suicide. It's easy to say that if we were in their place we wouldn't have done so and would have rather found a solution. The fact is we are not in their place. I don't support suicide, but I know that feeling.

It is common knowledge that people with Fibromyalgia are at greater risk of suicide (ten times more risk as per some studies). It is common knowledge that almost every person with Fibromyalgia has considered it at least once, a few gave in and most of us are fighting. That we are fighting makes us strong, but the ones who committed it weren't weak.

It's not an instant decision for one suffering with chronic pain and endless unbearable symptoms to end his/her life. It's a decision one arrives at after much much thought, much suffering 24x7. I would never call them cowards. Taking your life coz your loved one rejected your marriage proposal sure is stupidity. But never insult those who had to end their life after struggling every single moment, a lot more than you can ever imagine.

It is now confirmed that Robbin Williams, my favourite actor, did commit suicide. He was struggling severe depression. It is very important to accept that severe depression is an illness. Williams was a very brilliant person. He won't just wake up one morning and think, "Ok now I can't deal with all this." I am most certain that he must have thought and thought, a lot, before doing what he did. I am sad that he had to do so. I wish he didn't. But then, would I have helped him get rid of his depression instantly? NO. So I have no right to say that he was weak to do so. He was a strong and brilliant man who understood emotions and pain more than most of us do. I don't appreciate the comments by some people who are disrespecting him.

More care is important for mental health patients. It's easy to say that someone who was loved that much can feel so lonely. They can, you know.

Let's do something good instead of accusing people
Instead of accusing them of being weak (seriously?), let's ensure that every single person we know does not feel lonely or depressed. Let's be there for them. Instead of wasting time on commenting that it is a cowardly act, let's take a minute to message someone, "Hey if there is anything you want to talk about, I am all ears."
Let's take a moment to sit with our ailing parents for a while and tell them that we care and we are always there for them.
Let's take a few minutes to hear someone talk about their illness instead of the rude remark, "Oh you are always complaining."
Coz you know, those who have no one to speak to and have to keep all the pain to themselves are hurting a lot inside.

And my dear Fibromyalgia friends, remember this blog and the Fibromyalgia Awareness online support group is a place where you can pour your hear, vent out your feeling, complain and say whatever you wish to coz we are listening. There are over 5000 people supporting you. So never give in to that thought we have had perhaps a couple of times. You are not lonely, not at all.

RIP Robbin Williams, you will always be loved.

Linking Zeenat Merchant-Syal's blog Positive Provocations that helps people think positive.

PS - No I am not going to commit suicide, and I do not want anyone to.

Please note that this post will be read by those in depression and having incurable illnesses, so refrain posting harsh comments. Think people commiting suicide are cowards? Please keep the thought to yourself.

The Fibromyalgia Facts Series - Poster 1

Fibromyalgia is an incurable (until now) chronic condition that essentially means that a fibromyalgia patients has no choice but to manage life around the symptoms. As this is more of a syndrome with umpteen symptoms ranging from pain to hypersensitivity (read more here), every day for every patient is different. Yet, I have never had / come across a fibromyalgia person with a pain level of 0 for a day. Some medicines work for some, not for others. Some therapies / exercises work for some, not for others.

In such a complicated life situation, the best thing is to stay informed and keep reading. There are a lot of Fibromyalgia blogs, Facebook Pages (our page) & Groups (our closed group only for page members), Offline Support Groups, etc. where we can learn from each other. Sometimes, just talking to a person in the same boat is a good help.

So we suggest that you stay informed and stay in touch with others with fibromyalgia. Who knows when and how a simple tip by someone can help you ease your symptoms. If nothing, the emotional support does provide a lot of relief.

Read. Learn. Share.

Take care and be strong.

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This post is the first in The Fibromyalgia Facts Series of posters. I intend to create informative / motivational posters in this series to support the condition and raise awareness. Your ideas are most welcome.

Fibromyalgia Patient Interview 7: Lakshmi Rajagopalan

Meet Fibromyalgia warrior Lakshmi Rajagopalan from Bangalore, India, who coincidentally is just 5 days elder to me!!! As if when someone up there was deciding who all will get fibromyalgia later in life, selected people based on some permutation of their birth dates and allotted the year 2008 for her diagnosis and 2009 for me. Huh! Anyways, let's get realistic here and move on to Lakshmi's insightful and inspiring interview.

Age: 36 (as on July 2014)
Location: Bangalore, India
Occupation: Urban Planner

Kind of occupation: Full Time
Year when symptoms started: 2007
Diagnosed in: 2008

Marital Status: Married

Why should we not talk about our illness?

"Do something small and nice selflessly someday, you never know how many lives you can touch and how much you can be loved."
~Anuradha

What started as a small step to raise awareness has become such a lovely family. I am blessed to receive such strong support on the Fibromyalgia Awareness page. We will be a family of 5000 soon, people from across the world bonded by pain and understanding. The response to #SomethingPurple campaign is awesome with people still sending in their pics.

What touched me most was that many shared pics of their kids, spouse, relatives and friends wearing purple to show them support. A woman's little nephew gifted her a purple bracelet. Another lady's entire family and her daughter's friend dressed in purple. Another lady had her window display complete with Fibromyalgia pics. One of our members had shared her Fibromyalgia wedding theme - from bridesmaids to cupcakes, purple was prominent and beautiful.

It hurts that back here in India [I don't know if it happens in some other parts of the world too], we are not supposed to talk about illnesses much, forget having an entire special occasion planned around it. Most of us are asked not to tell relatives of our spouse that we have a chronic illness as it can start a whole lot of questions. One day, I will get this all sorted. Yes, I talk about illness, have it all over my social media profiles and I am proud, not ashamed of it.

It helps in a lot many ways. It helps people learn about an illnesses they had no idea about. If people can identify their symptoms, God forbid if they have fibromyalgia, they can get diagnosed in time. There's no cure, yet at least, they will not be termed as lazy or bombarded with words like, "It's all in your head." Local doctors, many aren't still aware of Fibromyalgia, will be able to understand that the fever could be fibromyalgia thing and the pain needs a different treatment approach.

I thank all who supported me in this initiative, shared pics, used the butterfly as their profile pic and shared our links.

I hope to find more people from India so that I can start our support group meetings. One day, we might get Gateway illuminated with purple lights too the day Niagara Falls was lit up last evening to raise Fibromyalgia Awareness.

Something Purple this Fibromyalgia Awareness Day

People from all parts of the world suffer from fibromyalgia. Yet, there is lack of awareness in most countries and cities. This Fibromyalgia Awareness Day, 12th May 2014, let's have Something Purple to support awareness. Here's a poem on some tips. Just have Something Purple, click a pic posing with it and share it on our Facebook Page.

We shall create a collage of all the pics and share it on our Facebook page as a lovely memory.

WINNERS - THE conTEST OF TRUE LOVE - 2014

So finally, announcing the winners of THE conTEST OF TRUE LOVE - 2014.

APPLAUSE... DRUM ROLL...

WINNER - WORDS FROM HEART
Dana Sturgill-Bledsoe for A Caring Family.

WINNER - ORIGINAL POEMS
It's a Tie: Cheryl Lafferty for Tails of Love and Maggie for Hold My Hand.

WINNER - DIY
Chrissy Yount for the Duct Tape entry.

Heartiest congratulations to all the winners and to all those who participated. The winners of all three categories will be featured on the home page of our blog for a month.

A caring family

Entry by Dana Sturgill-Bledsoe from Winchester KY, US:

My true love story doesn’t start when I was diagnosed with Fibromyalgia it starts in 1984 when my husband had a dream that he met a dark haired girl with glasses and he married her. We have been through a lot in our nearly 29 years.

Hold my hand

Entry by Betty Lipton from New Smyrna Beach, FL, US. Dedicated to her husband Bob. - See more at: http://www.fibromyalgiaawareness.com/#sthash.vNKOloSN.dpuf

Entry by Maggie, Southport, Merseyside, UK

Though I’m hurting all over, your help gets me through,

For I know you are with me, in all that I do,

You’re there to support me and offer advice,

For coping with something that’s really not nice,

STARS FELL

Entry by Betty Lipton from New Smyrna Beach, FL, US. Dedicated to her husband Bob.

The stars fell

from the sky

the day

I married Bob.

He took my

broken heart

and mended all

the unseen hurt.

Duct Tape DIY entry

Entry by Cheryl Lafferty for

Entry by Chrissy Yount, from Kittanning PA USA, dedicated to her Grandma who like Chrissy also has fibromyalgia.

Her entry is made out one Duct Tape!

If you love this creation by Chrissy, please appreciate in the comments section below.
Wish to participate in this contest created specially for those with Fibromyalgia? Know more here.

TAILS OF LOVE

Entry by Kim Ward for her beloved Mark Schults for our Valentine's day special - THE conTEST OF TRUE LOVE. - See more at: http://www.fibromyalgiaawareness.com/#sthash.Oo2mrjBP.dpuf

Entry by Cheryl Lafferty for - THE conTEST OF TRUE LOVE.

First, there was one, lonely and free,
until April of 87 when Lady found me.
I took her in and that made us two,
what joy I had with the addition of you.

Hearts Desire

Entry by Kim Ward for her beloved Mark Schults for our Valentine's day special - THE conTEST OF TRUE LOVE.

THE conTEST OF TRUE LOVE - 2014

I think you love me the same way I love you.
I cherish everything you say and do.

You lite my heart on fire.
I love you with so much desire.

THE conTEST OF TRUE LOVE - 2014

ENTRY DEADLINE EXTENDED: Last date of sending entries is now 23rd February!

Let's celebrate love all through the month. On popular demand, we have extended the deadline by 10 days. So start sending your entries today without any delay!

Inviting entries from Fibromyalgia Warriors for the second year of THE conTEST OF TRUE LOVE! Yes, a lovely contest just for those who have Fibromyalgia.

What's more exciting is that this year we will announce Winners in THREE CATEGORIES. Category 1: Words from Heart [50-300 words]
Category 2: Original Poems
Category 3: DIY gifts [photographs of gifts created by you]

Tips from Fibromyalgia Patients

As part of our #holdmyhand campaign, we are making a list of tips from patients suffering from fibromyalgia. These are tips that worked for some, if not all of the patients.

If you have unbearable symptoms and are looking for sound advice, this is where you can hear from several patients who are members of our Fibromyalgia Awareness campaign and/or are #holdmyhand campaigners.

Please note: These are tips from patients who found relief and different people behave differently to treatments. For example, I am not supposed to do yoga for now but swimming is recommended while yoga works for many patients. So do consult your doctor before you try anything new. Take care.

Tip 1: YOGA, EXERCISE AND HEALTHY DIET

The anonymous post that brought tears to my eyes

A member wrote her story to me today. A story that raises questions galore.
Are we here in this alone?
Are we cursed to deal with all the agony that comes with fibromyalgia all through our lifetime?
Is there any meaning to the vow, "In sickness and in health"?
Are the lawyers who we pay so much just around to make a buck while being insensitive to the core?
Why do some doctors break the little trust fibromyalgia patients have in them?

It's a long road ahead

Fibromyalgia Hold My Hand Campaign: Share Information

Are you a #holdmyhand for Fibromyalgia Awareness campaigner?

Here's the first activity:
Share at least 1 fibromyalgia info link on your Facebook timeline, Twitter, Pinterest or other pages where you have social media presence everyday until Sunday. You can pick something from our blog, our Facebook page, Pinterest or from any other source you like.

Remember to use the hash tag #holdmyhand when you post something. Let's see who gets us the maximum awareness.

To miss or not to miss

I always keep advising my fellow fibromyalgia friends that we should not overexert ourselves as we know by now how it can lead to worsened symptoms and more flares. This New Year, I made a resolution that I will be more careful with my health. Unfortunately, I got Chronic Gastroenteritis on top of the other problems. So, I took it as a sign to be really careful. Plus, I have started the Hold My Hand campaign and I am so glad that the response is huge, so I need to conserve and use my energy carefully.

Weekly Fibromyalgia Links: 3rd Week, January 2014

Fibromyalgia Directory and Weekly Links

As we continue to raise awareness about fibromyalgia, here is a novel idea to begin the new year on a happier note. Presenting Fibromyalgia Directory & Weekly Links - your one-point source for all information, news and tips about the condition.

I know it gets tough to browse through the hundreds of websites and several Facebook pages everyday to gather information and connect with those who understand and perhaps can help you. So, starting today, we shall have two new sections on our blog.

Weekly Fibromyalgia Links: 2nd Week, January 2014

This is the first post of our Weekly Fibromyalgia Links initiative.

This section encourages bloggers and websites to post their latest articles related to fibromyalgia. If you write regularly on a site / blog, you can add your links in our weekly links post for every week. This way, patients will have all the necessary reading material at one place and will never miss on any information. This will also give bloggers and website owners an opportunity to showcase their posts to the right and bigger set of readers.

Fibromyalgia Patient Interview 6: Barbara White

Meet Barbara White, one of our most active members and a wonderful person. She used to have an awesome job as a production department manager and is now on disability following fibromyalgia. Her advice to families, friends and doctors of those with fibromyalgia is worth giving a thought. Do read her entire story and thank her for sharing this with us.

I begin this interview with a big apology for the delay as Barbara had sent across the completed interview months ago and I kept forgetting (perhaps it was my fibro fog, but I am not citing that as an excuse) . I am so sorry Barbara and I start this year's Hold My Hand campaign with your interview first. ~Anuradha

Hold My Hand Campaign

475 shares (as on 6th January 2014) and 60+ mails from people to join the campaign we launched on 3rd January 2014! And these participation requests are from fibromyalgia patients alone!

FIBROMYALGIA MESSAGE BOARD: What Fibromyalgia Warriors have to say

Yes, this is a FIBROMYALGIA MESSAGE BOARD, a wall where fibromyalgia patients from across the world share what they want to tell you. Please take a moment to hear them out in the Comments section below. They would just want you to understand them.

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ENTRY DEADLINE EXTENDED: Last date of sending entries is now 23rd February!

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