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.