Welcome our 1st Non-English Blog to FCK

As you may know, FCK is a directory of blogs that help spread knowledge and awareness of Fibromyalgia: blogs where you can get first-hand information from others who are going through the same experiences.

These bloggers educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia.

It is with great pleasure that I welcome our first non-English speaking blog to the directory:

Young people with Fibromyalgia (Portugal) (Jovens Portadores de Fibromialgia (Portugal))

portugueseThis Portuguese blog has two administrators: Joana Vicente, a 24 year-old in pain since she was 11; and, Fátima Figueiredo, a 13 year veteran of the fight with Fibromyalgia – sharing information about Fibromyalgia and other co-morbidities.

Este blog Português tem duas administradoras: Joana Vicente de 24 anos, que sofre com dores desde os 11 anos e Fátima Figueiredo de 35 anos que luta contra a Fibromialgia à 13 anos. Partilham informações sobre Fibromialgia e outras comorbilidades.

And, some-one please tell me if I messed up on the Portuguese!

Fierce and Fabulous (and Depressed!)

Alisha - Invisible FOne of our fabulous FCK bloggers has been presented with Fighterzine‘s  first Fierce Fabulous Fighter Award: Alisha Nurse from The Invisible F. Alisha is a very worthy recipient of this award – you’ll have noticed I re-blog her quite regularly.

In fact, even before I found out Alisha was a Fierce Fabulous Fighter, I was going to let you read this one:

Depression Awareness Week

It’s officially Depression Awareness Week and I want to ask you to take time to either learn a little bit about this illness, or help raise awareness.

Photo by Gloria Williams

Photo by Gloria Williams

For a very common illness which will affect 1 in 5 people at some point in their lives 1) there are still ALOT of misconceptions about depression, and 2) people don’t realise the seriousness of it.

In case you didn’t know and you’re asking me now, what is depression?

It is the feeling of persistently feeling sad for more than a couple weeks accompanied by other symptoms. Read more about it by clicking on the link above.

Who gets depressed?

Depression can affect anyone. It does NOT discriminate. It doesn’t care who you are, what job you have, how qualified you are, or that you’re determined to be happy. You might be at risk of getting it if:

  • It already runs in your family
  • You have low self esteem
  • You live with a long term illness

But you can also get depressed for no reason. Perhaps you’re one of those affected by a chemical imbalance in the brain, (particularly of the neuro-transmitter serotonin which regulates our moods). Even if you don’t naturally have a lower amount of serotonin in your brain, if you get depressed it may lead to lower levels of this neurotransmitter, hence, the need sometimes for anti depressants.

So you see, it is a real illness caused (or causing) physical changes in the body. It is not imagined, it is not feigned and there is no one remedy that works for everyone.

Make a difference

Stigma attached to depression often causes people to hide. And if people are hiding they cannot get the help they need to get better.

Instead, many give up.

More than 70% of recorded suicides are committed by people with depression. In the UK and Ireland alone  more than 2 young people commit suicide every day.

This reality came back to haunt me this week as my friend almost ended a statistic. But thankfully, she belongs to the charity Depression Alliance which provides key volunter led support. We were able to get her medical help, and she remains in hospital recuperating.

I end now how I started. By asking you to do something to further this cause. Share some knowledge, learn about it, start a discussion, volunteer or donate to my fundraiser to raise money for Depression Alliance. It’s imperative to me because it is something I’ve lived since childhood.

I too have hidden, been ashamed, laid in hospital recovering from failed suicide attempts, been criticised and scorned, even by those meant to care for me. It’s taken me a long time to get to this place of talking openly because I realise someone has to, even if it’s not easy. Even one life saved is a difference made. The life saved could be someone you know even.

Thankyou for reading with an opened mind.

Gentle hugs :)

N.B. The Depict Depression fundraiser art competition is still open. Prizes include Estee Lauder gift sets, book vouchers and Vicky Scott artwork. Deadline Wednesday 17th April 2013.

Got Fibro? Now What?

Ok, you have a diagnosis…now what’s going to happen?

ae78c7c2bc0e5642e361bf001c101af9Most likely, your doctor is going to give you medication. There are many different medications used to manage FM, including pain medicines, sleeping pills, and antidepressants.  Some help ease pain. Others boost mood and improve sleep. Working with your doctor will help you find the right medication to add to your multi-faceted comprehensive treatment regimen. That way, you can begin to manage your symptoms effectively…

The first medication doctors will often try is an anti-depressant (this does NOT mean you are necessarily suffering from depression!), which helps relieve pain, fatigue, and sleep problems. Nonetheless, depression is commonly seen in people with FM.

Older anti-depressants, called tricyclics (including Elavil (amitriptyline) and Pamelor (nortriptyline)), have been used for many years to treat FM. They work by raising the levels of chemicals (neurotransmitters) in the brain.

Tricyclic anti-depressants increase levels of serotonin and norepinephrine in the brain. People with chronic pain often have decreased levels of these calming neurotransmitters. Tricyclics can relax painful muscles and heighten the effects of endorphins – the body’s natural painkillers. While these medications are often very effective, the side effects can sometimes make them difficult to take as they may cause drowsiness, dizziness, dry mouth, dry eyes, and constipation.

There are numerous types of anti-depressants and several of them have been shown to help relieve the pain, fatigue, and sleep problems in people with FM.

pillsThe most well-studied anti-depressants for FM include Cymbalta (duloxetine), Savella (milnacipran), and Effexor (venlafaxine). Cymbalta and Savella are specifically FDA-approved to treat FM. There is less medical research to show that Effexor helps FM. Other anti-depressants that have also been studied for FM and may help include Prozac (fluoxetine), Paxil (paroxetine), and Celexa (citalopram).

That’s a lot of different choices to work through and yes, it’s all trial and error to see what works for you. What works for one person with FM may not work for someone else. Different anti-depressants work differently in the body. That’s why you may have to try more than one anti-depressant to find the one that best relieves the pain, fatigue, and sleep difficulties. Your doctor may even want you to try a combination of more than one anti-depressant at a time.

Then, there are different types of pain relievers, sometimes recommended to ease the deep muscle pain and trigger-point pain that comes with FM. The problem is these pain relievers don’t work the same for everyone, either.

article-new_ehow_images_a05_sc_bu_can-nexium_-800x800Non-steroidal anti-inflammatory drugs (NSAIDs), when taken alone, don’t typically work that well for FM. However, when combined with other medications, NSAIDs often do help. NSAIDs are available over the counter and include drugs such as aspirin, ibuprofen, and naproxen. Further, the over-the-counter pain reliever acetaminophen elevates the pain threshold so you perceive less pain. Acetaminophen is relatively free of side effects. But avoid this medication if you have liver disease.

You also need to be careful taking aspirin or other NSAIDs if you have stomach problems. These medications can lead to heartburn, nausea or vomiting, stomach ulcers, and stomach bleeding. Don’t ever take over-the-counter NSAIDs for more than 10 days without checking with your doctor. Taking them for a prolonged period increases the chance of serious side effects.

Sometimes, your doctor will prescribe the muscle relaxant cyclobenzaprine. has proved useful for the treatment of FM. It has proved to be helpful with easing muscle tension and improving sleep. Muscle relaxants work in the brain to relax muscles; but you may experience dry mouth, dizziness, drowsiness, blurred vision, clumsiness, unsteadiness, and change in the colour of your urine. These medications may increase the likelihood of seizures, confusion and hallucinations.

Most recently, Lyrica, originally used to treat seizures, is being used to treat FM. Lyrica affects chemicals in the brain that send pain signals across the nervous system. So it reduces pain and fatigue and improves sleep.

Neurontin (gabapentin) is another anti-seizure medication that has also been shown to improve FM symptoms.

SMFM-278Other medications include pain relievers such as Ultram (tramadol) which is a narcotic-like medication that acts in the brain to affect the sensation of pain. However, it is not as addictive as narcotics.

In addition, doctors may prescribe benzodiazepines such as Ativan (lorazepam), Klonopin (clonazepam), Valium (diazepam), and Xanax (alprazolam) to help relax painful muscles, improve sleep, and relieve symptoms of restless legs syndrome. Benzodiazepines are addictive and must be used with caution on a short-term basis. Taking more than recommended increases the risk of serious side effects, including death.

Powerful narcotic medications, such as Percocet and OxyContin (oxycodone) and Vicodin and Lortab (hydrocodone), should only be considered if all other drugs and alternative therapies have been exhausted and there is no relief.

All of this seems quite daunting which is why you need to surround yourself with a team you trust, which may include doctors, friends and/or family. The most consistent treatment advice that all the experts in FM try to promote is a multi-faceted approach. So, as well as all these medications, you will need to explore a whole range of complementary treatments.

FCKI don’t mean to scare you; in fact, I am trying to help by blogging about research and my experiences with different activities (please explore the site). There is also a directory of other FM bloggers that allows you to find people who are going through the same stuff as you.

Happy Birthday to All of Us

Hello my little family of Fibro friends,

Today, I received a notification: I have been with WordPress for 1 whole year; which means today it’s our birthday. And I say ours because if it wasn’t for our little band, I probably would not have continued to blog every day or maintained my vigilance with our awareness projects.

So, I figure that now is the perfect time to have a run-down of our current projects, set some goals for the next year while promoting those projects to those of you who have not gotten involved…

The VISIBLE Army 

Become part of the Fibromyalgia VISIBLE Army! Join another 898 soldiers (with and without FM) who are fighting to bring awareness to our invisible condition.

If you haven’t already joined, visit our page of templates, insert a fabulous photo of you, then post your new profile picture to my Facebook page so I can add you to the gallery on this website, Pinterest and the FB gallery.

Visible army squareOriginally, the idea for the photos was to have you all upload them to your profile pictures. I understand some of you hesitated in uploading your VISIBLE Army photo, as FM is NOT your whole world (for some of you); but the idea for all the photos was to encourage other people to ask questions.

So, on March 12th (just passed!) and April 12th – I am asking you all to upload your VISIBLE Army photo for the whole day. Then, for the entire month of May (May 12th is International Fibromyalgia Awareness Day), you keep your VISIBLE Army photo as your profile picture.

Thunderclap!

Thunderclap is a tool that lets a message be heard by saying it together.

When we reach our goal number (and we already have!), Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time!

Our message is set to ‘go off’ on May 1st. The message that will appear is: Make Fibromyalgia VISIBLE (for the whole of May) with this Facebook cover photo http://thndr.it/VaVZqZ

The cover photo that we are asking everyone to upload, to turn Facebook purple is:

header

Right now, we have 269 supporters and we will reach 87,210 people on May 1st.

This is one time when you really can make a difference. Visit our Thunderclap and choose to promote and/or support it on Facebook and/or Twitter. I think it is quite realistic to have a current goal of a social reach of over 200,000! Help make it happen!

FCK

FCKProvocative, isn’t it?

FCK stands for Fibromyalgia, Community, Knowledge. It is a directory of bloggers who educate, support, inform, inspire & motivate people about & with Fibromyalgia.

I chose the acronym deliberately, not to offend but, to make people take notice.

I think it’s about time we start ‘branding’ our awareness campaign. We NEED to stand out! We NEED people to take notice. We NEED people to ask what it is.

So, I’m hoping that as the directory grows and more people share the link, more people will see the banner and actually ask about it.

Fibro-Knowledgeable Doctors

We all know how difficult it is to find an understanding and knowledgeable doctor. You may not have noticed but we currently have a page called Fibro-Knowledgeable Doctors. These are doctors who have all been recommended by patients.

For pages like this to work, we need more people to share their recommendations. If you have one (or more), please email me at contributions@fibromodem.com.

LIVING WELL with FIBROMYALGIA

CoverWe have just published our 4th issue of the E-Mag LIVING WELL with FIBROMYALGIA. It is available (for free) by subscription.

Our next issue, out June 1st, is themed TREATMENTS. If you would like to contribute, check out what ‘m looking for HERE.

So, happy birthday to us; and keep spreading the awareness!

Guilt: the Gift that Keeps on Giving

FCKHaving started FCK (a directory of blogs that educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia), I have had the privilege of discovering so many blogs that I may never have seen if not for this project.

One of those blogs is Same Burn…Different Flame. Cathy is about 12 types of awesome, 10 of which she hasn’t quite put her finger on (yet!) It isn’t her goal to change the world or end our nation’s poverty crisis…. but hell, if she could, she would TOTALLY do it.

One of Cathy’s blog posts has resonated with me greatly – here it is:

I’m sorry: An open letter to my loved ones

Dear family and friends,

First and foremost, I’m sorry.  I feel like I’ve let you down in many, many ways.  And there is nothing to say, except, “I’m sorry.”

I can honestly say that I don’t have a handle on what’s happening with me, lately.  At one point in the not-so-distant past, I was lively and energetic.  That girl is…. well, she’s gone now.  And I don’t know where she went.

I feel like I can never get enough sleep.  Never.  I’m exhausted.  During the week, I force myself to get out of bed and carry on with my day.  I get up at 5:30 am, drive to work, work all day (most of the time without a lunch break), drive home and finally take my shoes off at 6:00 pm-ish. I. Am. Exhausted.  I make dinner (which, admittedly, isn’t all that exciting these days), and I collapse on the couch, too exhausted to do anything else.  By the weekend, I lie around the house, unmotivated to do anything but sleep.

And then, there’s the pain.  I don’t know that you would ever understand, unless you have been where I am right now.  Miserable doesn’t even begin to describe it.  Imagine, if you can, the last time you were really sick.  Then, imagine the last time you were really sore.  Like… for me?  It’s like the time I had walking pneumonia, combined with feeling like I had just done a half-marathon.  I dread waking up, because moving in the morning is like trying to break out of an invisible cast.  I’m stiff.  It hurts.  And I don’t know if it’s just a morning thing, or if I’ll be suffering all day.  Once I get going, random things will bother me.  My hips will hurt.  Or my toes will burn.  Or my back will ache.  Or I’ll be itchy.  Or my legs will cramp.  Or I’ll have a headache.

Good God… the headaches.  They’re not to be underestimated.  It could be a dull, constant headache.  Or Satan can be gripping my brain with his red-hot, pokey fingers.  They can last a few hours, or for days.

I get tired of taking medications.  Side effects from them mean that I have to take other things to try to feel better.  For example, the Tramadol makes me itchy.  So I have to take Bendryl to alleviate the itchiness.  But Benedryl makes me sleepy.  So I have to take an energy pill.  The energy pill makes the pain worse (not sure why).  So I have to take Tramadol.  And so it begins, again.

……I carry guilt with me.  All the time.  I feel guilty because I am tired.  I feel guilty because I am lazy.  I feel guilty because I am crabby.  I feel guilty because I am distant.  I feel guilty because I’m weak.  I feel guilty because I’m losing the battle.

I don’t have the answer.  But it isn’t for lack of asking the question.  Please, don’t stop loving me.  Don’t leave.  Don’t close your ears and your heart.  I’m trying.

Maybe, someday, the girl that you used to know will come back.  Until then, just keep loving the girl that I am, now. Hug me.  Tell me that I’ll be okay.  Hold my hand.  Talk with me.  Let me vent.  Help me forgive myself.

With unparalleled love,

me

Feeling the same way? Feeling guilty?

A Life of PURPOSE

In 2008, I hit depression and it hit me back – in fact, it sucked the air out of my lungs, swept my legs out from under me, vacuumed my head of any reasonable thoughts and sat me, quite firmly, on my arse! Supposedly, this was all brought on because I was working full-time in the casino (an intrinsically depressing place at the best of times), while studying part-time for my law degree.

Anyway, at the time, I thought it was because I had no PURPOSE – I was stuck. I had 3 years to go with my degree. I had a mortgage. I couldn’t really look for a meaningful change in career quite yet.

I stuck it out (with a couple of extended pauses in there) and graduated with Honours (just HAD to put that in here!) at the end of 2010. I thought that the noble profession of law would be my PURPOSE.

Well, I only got to practice for one month before my body said: “Tee Hee, ready for the next hurdle?”

So, here I am.

Under legislation, I am not allowed to practice unsupervised for 2 years, but it seems that I can’t work for some-one because I can’t be relied upon for scheduled work days/times. My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. I cannot envisage how I can maintain employment with this thing called FIBROMYALGIA.

So, once again, I am confronted by what my PURPOSE might be…

Getting up at a ‘normal’ hour is mighty difficult when there is no reason to be up at that time. Sitting on the couch until some-one can pick me up to take me out is hardly meaningful. Scheduling when to shower so I have enough energy to walk to my doctor’s appointment is not inspiring. Playing with my nieces and nephews will not change the world.

Now, that’s it. My psychologist and I have chatted about this topic. She said maybe my legacy would be via my nieces and nephew? But, to me, that’s not good enough – I want to do something big. I NEED to do something worthwhile (not that the kids aren’t worthwhile). I want to DO something, like discover penicillin or change laws.

Right now, my entire being seems dedicated towards making people aware of the word FIBROMYALGIA – it is my theory that if we can get the word out there, people will start asking about what it is…THEN we can start spreading information.

The Visible ButterflyThat’s part of the reason I have started some of my awareness projects: the intention behind the VISIBLE Army was to have everybody upload their photos to their profile pictures so that friends (and friends of friends) would start seeing the Word. header

With our THUNDERCLAP, I really don’t expect (although I’d really like it if) everyone uploaded the cover photo attached to the Thunderclap message but, even if they don’t, at least, the Word will be spread to as many people as possible. (Have you supported and/or promoted our Thunderclap yet?)

FCKI have recently started FCK: a directory of Bloggers who educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia. Yes, the logo may be confronting and controversial (most people can’t help but add a ‘U’) but I think it’s about time we start ‘branding’ our awareness campaign. We NEED to stand out! We NEED people to take notice. We NEED people to ask what it is. So, I’m hoping that as the directory grows and more people share the link, more people will see the banner and actually ask about it.

I guess we all need a purpose…