A Fibromyalgia Fairytale

If you read my FB post, you’ll know that I am NOT in the most amazing mood! And a parable is the only way I can even put into words the way I’m feeling

zombieOnce upon a time there was a gargantuan, purple she-monster, who lived in a small village, where she used to terrorise the man/boys (ages 29 – 35). Round and round the village, she used to lope (because walking hurt) after them – never catching them.

One day, she just gave up (or, at least, she is trying to). It was no use anyway; all the beautiful she-villagers were catching the man/boys – there were none left for the she-monster.

beautiful people

And no matter how much filler she used, she was never going to have gorgeous, full lips. No matter how much she dieted (especially with her Lyrica dosage), she was never going to be slim. No matter how much moisturiser she used (and that’s when she remembered), she was never going to be younger.

That same day, she realised that she was never going to meet anyone (she was unable to leave the village)…

At the same time as that realisation hit her, a group of man/boys whooshed by in their chariot and yelled out, at the top of their voices, “you #()^%ing, ugly (&%T!!!!’

And that was my day (and how I felt all day!)

(S)Lumbar Support

Understanding how insomnia and other sleep problems contribute to hopelessness can help all FM patients.

Insomnia and disturbed sleep are common among people with depression and other mental health problems. In fact, disturbing research indicates that people with depression are significantly more likely to experience insomnia symptoms. So, which one came first? The chicken or the egg?

Most distressing is that insomnia also has been linked to an elevated risk for suicide. A recent study offers new details about the relationship between insomnia and suicidal thoughts among people with depression.

Researchers at Georgia Regents University examined the possible influence of insomnia and disturbed sleep among patients with a history of depression and suicide.

59 FMG insomniaTheir study included 50 patients between the ages 20-84. All had received treatment for depression either as in-patients or out-patients, or in the emergency room. Seventy-two percent of the participants were women, and a majority—56%–had attempted suicide at least once. Researchers measured levels of depression and insomnia, feelings of hopelessness, as well as the presence and severity of nightmares and attitudes and beliefs about sleep.

On average:

  • Participants experienced moderate insomnia
  • Analysis showed an association between the presence and severity of insomnia and suicidal thoughts (as expected)
  • Among people with depression, insomnia contributes to a sense of hopelessness about sleep, according to researchers. These negative feelings about sleep, as well as nightmares experienced by people with depression and insomnia, may be critical predictors for suicidal thoughts.
  • Researchers also analyzed data to examine the possible relationship between nightmares and attitudes about sleep with suicidal thoughts, and found significant associations. When these additional sleep problems were included in the analysis, insomnia itself was no longer directly associated with suicidal thoughts.

This suggests that insomnia may have an indirect effect on suicidal thoughts, through the presence of these other symptoms, in patients who are depressed.

This is important new information in the understanding of the link between insomnia and suicide. The presence of these symptoms—nightmares and feelings of hopelessness about sleep—may be a more specific predictor of suicide risk among people with depression than insomnia in general.

And because FM patients often have feelings of hopelessness about sleep (Hey! many of us haven’t had a decent night’s sleep in years!), this is important research.

Earlier work by some of the same researchers explored the relationship between insomnia and suicide. Their study included 60 patients between the ages 18-70. Two thirds were women, and all suffered from major depression and insomnia symptoms.

The researchers found that the severity of insomnia among these patients was linked to degree of suicidal thoughts. More severe insomnia was associated with higher intensity of suicidal thoughts. In their analysis, researchers isolated insomnia from other symptoms of depression, such as low mood and inability to experience pleasure. They determined that insomnia is an independent predictor of suicidal thinking.

This latest study has built on those findings, looking with greater depth and specificity at how insomnia and related attitudes and behaviours of disrupted sleep may influence suicidal thoughts.

Other research has shown a strong association between insomnia and disrupted sleep and suicide for people with depression and other psychiatric disorders:

  • Hungarian researchers found that sleep disturbances and nightmares elevated the risk of suicide by as much as 4 times among men, and as much as 3 times among women. In this study, frequent nightmares and sleep disorders were associated with a higher risk of suicide than depression.

The connection between insomnia and suicidal thoughts, influenced by nightmares and the presence of negative attitudes and beliefs about sleep, may  provide important new options for suicide prevention and treatment of depression and suicidal thoughts. By identifying nightmares and dysfunctional, negative attitudes about sleep as important predictors of suicidal thinking in people with depression, the medical profession may, finally, be better able to identify those who are at greater risk for self-harm.

La ♫ La ♪ La…Lyrica(l) Lullaby

So it’s been a week since Whatever…Nothing! – that means the first week of Lyrica weaning is over.

doses

I can’t say that I’ve noticed much change: I had some huge headaches and face pain but that can be blamed on a cracked tooth that now needs a crown (bloody! bloody!); I had a couple of totally fogged out days but that was nothing really different; and today, I had an amazingly great day – just because sometimes (and hopefully more often), that just happens.

I think tonight’s reduction may make more of a change because it’s a reduction of the night dose. If Lyrica is as good at helping us sleep as they say so, then I may start experiencing some trouble. Of course, I hope not and I’m really not expecting any trouble…yet!

Week 3 (and onwards) scares the hell out of me…and you’ll get to hear ALL about it (hee! hee! Lucky you!)

D is for…Fibromyalgia?

No matter how positive you try to be, there are days when it really gets to you and you go tumbling back into that black hole that seems to eat all the good in your life. Transform your chronic lifeWendy from Transform Your Chronic Life has described this feeling perfectly in her post ‘Fighting the Five “Ds” of Fibromyalgia‘:

Like your most annoying relative, the five “Ds” of fibromyalgia tend to show up over and over.

Diagnosis – Depending on how long you’ve been sick, being diagnosed with fibro can either be a huge relief or throw you into a deep depression. If you’ve been hearing, “there’s nothing wrong with you;” for years, finding out that you actually AREN’T crazy is a major relief. On the other hand, once you realize that having a diagnosis doesn’t necessarily mean the doctors are going to be able to actually DO anything but try to manage your symptoms, you’re likely to fall into the rest of the “Ds.” Even worse, a fibromyalgia diagnosis frequently leads to even more diagnoses, since there are multiple co-occurring illnesses that go along with it.

Desperation – Desperation is a big issue for people with fibromyalgia, whether it’s a desperate search for treatments that work or a desperate struggle to pay the bills. No two fibro patients have exactly the same set of symptoms, and the treatments that work for one may not work for someone else. The worse your symptoms, the more likely it is that you either won’t be able to work at all, or that you’ll only be able to work part-time, and both cause major financial issues.

Depression – Depression tends to be a frequent visitor in the lives of those with any chronic illness. You don’t only have to live with pain and other disabling symptoms, you get to hear your doctors telling you there’s nothing they can do for you, your friends and family telling you there’s nothing wrong with you, and society telling you you’re nothing but a lazy leech who would rather lie around and watch tv while everyone else works to support you. And people wonder why you get depressed?

Even if you have a job, the stress of trying to make ends meet on what little you can make can also lead to depression. If you can only work part-time, or can only FIND a part-time job, the situation is even worse. Do you buy medicine so you’re ABLE to work, or buy food? Do you pay the utilities this week, or hope they won’t turn them off before your next check so you can actually EAT this week?

Despair – The previous “Ds” have a bad tendency to lead to despair.  You feel trapped, and can’t find any way out. It can be a horrible cycle, and it’s not easy to find a way to break it, especially when financial issues play a part. When rent and utilities take every penny you can scrape together, and you spend days or weeks hungry, despair can eat your world.

Defeat – Finally, there’s defeat; the last, and maybe worst, of the “Ds.” Defeat is a stopper, because once you feel defeated, you’re likely to give up. “What’s the point of fighting any more?” you think. It feels like no matter what you try, it goes wrong; no matter what you do, or don’t do, things just keep getting worse. It gets to the point that you feel like everything you do makes the situation worse, so why bother to do anything anymore?

I’ll leave Wendy there for the moment…

…and answer by saying that it has to get better than this! This cannot be ALL there is. We must have been put here for a reason – we just have to find it!

Step Up and Get Back to Being YOU!

Chronic pain has a way of radically changing a person’s life; even those with strong self- esteem and coping skills struggle (yep, even me!). Healthy self-esteem enables us to accept, respect, trust and believe in ourselves. Chronic pain can take that away from us: for some, the most difficult blow comes when you can no longer do things connected to your identity (loss of a job, not being able to participate in sports or hobbies, not being able to spend time with friends); for others, using a cane or walker or having to use a handicapped placard is devastating.

Whatever it is…you no longer feel like YOU; instead, you are just a bag of symptoms. This is exactly what Connie from Alice in Fibroland wrote about this week:

I took the stairs

Stairs

Yesterday, I took the stairs, instead of the elevator, and that made all the difference.

I was having a good morning.  I’m taking some new medications, one to help me sleep better and one to wake up my body during the day.  It seemed like an innocent flight of stairs, and I was feeling ok.  I was feeling stronger, braver – that little fear inside that says this is what life is going to be like from now on was quiet.  So I took the stairs.

And it came rushing back.  The strength flew away and took the bravery with it.  My breath was gone, my muscles were jelly.  I was no longer me, no longer ok.  I was fibro again.

There was a day earlier this year where I had the briefest moment of insight.  For weeks before, I had been sick, on top of fibro, with the flu and pneumonia.  At doctor’s visits, I had become my symptoms.  I wasn’t Connie; I was shortness of breath, exhaustion, fever.  But for a brief moment, as I was recovering from those illnesses: I didn’t feel any shortness of breath, so I wasn’t shortness of breath.  And I didn’t feel any exhaustion or fever, so I wasn’t those symptoms, either.  I was me, just me.

It’s the same with fibro.  In a search for answers, we become our symptoms.  We are fatigue, we are pain, we are fog.  It is such a struggle to climb those stairs, with the symptoms that are weighing us down, pulling us away from our true selves.

And yesterday, when I decided to take the stairs, I wasn’t my symptoms.  I was me, who used to take the stairs.  But by the time I made it to the top, I was fibro again.

To someone who is used to doing it all, learning to balance, to pace and to set limitations — weighing the stairs over the grocery store or the post office over cleaning the bathroom — is like learning to breathe underwater.  In the long run, taking the stairs isn’t important.  Neither is my ‘To Do’ list, cleaning the bathroom, or even the post office.  What’s important isn’t the doing or the things.  It’s the being, just being me.

You are NOT your illness! 

You don’t have to see the whole staircase, just take the first step.

Martin Luther King, Jr.

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Things I Miss Most Because of Fibromyalgia

Inspired by Toni Bernhard, J.D. in Turning Straw Into Gold…What do you miss most because of FM problems?

As Toni said: I’m trying to keep a non-complaining tone as I write.

Complaining does no good, so this is how I see my life in a realistic and factual manner.

1. Spontaneity

chronic comic 175Just like Toni, it is my guess is that this is #1 on most of your lists.  But this works both ways: sometimes you have to painstakingly plan everything so you don’t over-do it (yes, pacing!). And even then, you might be having a bad day and all that planning goes down the drain.

But, if you’re lucky, you may wake up feeling horrible (what? you say) so you ditch all the plans for the day…then, suddenly, in the afternoon, you begin to feel better so you go for a walk and get a chance to slowly window shop and appreciate your local area – something you just haven’t had time to do before.

2. Variety

As you know, I live alone. Most of my days are pretty much the same, all the time; unless some-one I know cares to visit or take me somewhere outside the 10km area zone that I am restricted to because it hurts to drive further. I tend to see the same people every day: there’s the hairdresser who calls me in for a coffee each time I pass her shop, there’s the guy who works in the bottle shop (near the supermarket) who takes a cigarette break with me each time I go shopping, there’s the florist who waves to me as I pass her store and gives me great discounts, there are all the ladies in the post office who always ask if it’s a good or bad day…and care.

Hey! Hold on…those aren’t such bad things; in fact, it makes my city living feel like a little village, and I would never have met these people if I hadn’t have gotten sick.

3. Being actively involved in the life of my family

I'd really like a girl!

I’d really like a girl!

My family now has 5 children under 7 (and another one on the way) and it hurts being in the same room with all of them sometimes.

But, if I was well/cured and working, I wouldn’t get to see them anywhere near as much. I wouldn’t be able to baby-sit or have one of them sleep over during the week, or do creative activities during school holidays.

4. Socialising

When I think about it, I didn’t really do much socialising when I was studying or working – I was too busy. I had some invitations (not too many) and yes, they have dried up now…but, really, not much has changed in that department.

5. The ability to pursue my former interests

I can no longer play squash with my father (but my father and I are no longer on speaking terms anymore, so that may have happened anyway!)

I used to love to read…and I still love to read, except that, by the time I have read 4 pages, I fall asleep.

I used to love spending a whole day shopping with my Mommy…mainly just looking – now I can only last 2 hours at most. Buy Mommy is not so well, either so outrageously long shopping trips would have been out of the question anyway.

6. Health not being the topic of conversation

64. More to meEven when (or maybe especially when) I’m not in the room, the conversation turns to my health. Am I looking good? Am I getting better? Why can’t I go back to work? Isn’t there something I can do?

I don’t want to be the centre of attention – at least, not for this ‘achievement.’

So, really, I don’t miss any of these things – what I really miss is the CHOICE: the choice to be spontaneous, the choice to re-introduce variety into my life, the choice to spend more time with my family, the choice to go to the local pub and meet new people, the choice to find new interests, the choice to stand out for something other than my weird condition; and the choice to be anybody I want.

What do you miss?

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversBottom of Form
Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrowis available for pre-order and will be released in September.

Whatever…Nothing!

Yesterday, I (with my Mommy) was running late for my pain specialist. I hate running late. It stresses me out. I think it is incredibly rude. But, yesterday, when my Mommy was apologising for making us late, I was just ‘whatever.’

Then I thought about it and I’ve been ‘whatever’ for quite a while. It’s not such a bad feeling – it’s stress-less, very laid back and unemotional. But it’s very nothing.

I also noticed that I haven’t been writing anything personal on this blog – it’s been all about research and studies. It’s because there is nothing.

I think I’m on too many drugs…

When I was first diagnosed, (other than a quick dose of steroids) I was immediately put on Lyrica. Anytime I felt more pain, the doctors increased my dosage…my current Lyrica dosage is 225mg both morning and night.

I also take 150mg of Sertraline for depression – it used to 100 mg but during this ‘whatever, nothing’ stage, I felt that I needed something extra. My GP was happy to increase the dose. There’s also 1100ʮg per week of Thyroxine for my under-active thyroid; the Pill (I went off it (because who’s having any sex?) but my periods were unbearable!); and, of course, there’s all the supplements that we’re supposed to take: vitamin D, Red Krill Oil, D-Ribose, Sam-E, CoQ10, and a multi-vitamin.

Anyway, my point is that no-one tried anything except the Lyrica…why not?

So, having visited the pain specialist yesterday, we’re trying something else: I’m running out of all the supplements at the moment, so I’m just going to stop them as the bottles empty; and I’m going to wean off the Lyrica:

doses

Because this ‘whatever, nothing’ just isn’t good enough. I want more. I NEED more!

So What Do You Say?

Someone in one of my on-line support group asked:

Does anyone with fibromyalgia say they have CFS? Some times I think it’s easier…

That’s because, in Australia, we don’t have the ads for medications – we don’t have people who know what FM is. When some-one asks me about it, I always say that it’s like CFS but with pain. It’s the easiest way I can explain it.

Leah TylerIt was timely that Leah from the Chronicles of Fibromyalgia blogged about the Stigma of Fibromyalgia:

Last week I went to the post office and had yet another enlightening conversation with the clerk helping me. It’s a conversation I’ve had many times with many different people during a variety of activities. In fact, it doesn’t seem to differ much at all regardless of who I am talking to. She took one look at my The Fibromyalgia Crusade return address labels and repeated the name slowly. “I’m tired all the time, how do I know if I have Fibromyalgia?” she asked. The way the question was phrased indicated this person had some prior knowledge of at least one facet of Fibro symptoms. I paused for a second to figure out how to best answer this question. “Well,” I answered honestly, “when it gets so bad you’d rather die than continue living it’s time to go to the doctor.” Was that dramatic enough? She gave me a rather perplexed look. “It’s extremely painful too. A central nervous system disorder that increases painful sensations in the muscles and ligaments,” I added. “So it hurts like when you work out too much?” she asked with an utterly obnoxious smirk. Ahhhh, I thought to myself. Someone in her life has Fibro and she doesn’t like it one bit! Doesn’t understand it, doesn’t believe it…

“Oh no,” I answered, unwilling to be painted into a corner on this one. “It’s like the flu. A really bad flu. Forever. For years. It never goes away.” That reached her. She got a look on her face which was a wonderful combination of shocked horror and blatant discomfort. Our conversation about Fibromyalgia ended there and I quickly paid and left. Well the second we stepped outside the friend I was running errands with got a wigged out look on her face. “You sure handled that a lot better than I would have!” she yelled. “I wanted to reach over and smack her across the face!” I laughed and thanked God for the supportive people in my life. So I explained my diplomatic approach, how getting people to understand and relate it to their lives is far more important than being right or caring how strangers perceive me. And as we talked through this twelve second conversation and the many layers of meaning it held I realized something overwhelmingly profound had happened.

I didn’t get upset! I was confronted with a doubter and didn’t experience one blip of spiked blood pressure. There was no taking this person’s disbelief personally or feeling ashamed I have something so many people don’t understand or give credence to. There was me, explaining it, putting real world comparisons to my pain and symptoms. And then ultimately walking away and not giving one rat’s woo-ha if she changes her opinion about Fibromyalgia or not. I’d done my part and hopefully made her think about it in a different way. That’s all I can do. Encounters like this used to leave me outraged, frustrated, bitter and completely bent out of shape. And wondering why I had no ability to tend to my own life. I’ve been working very hard on releasing the need for approval and acceptance from people who aren’t relevant to my existence. I guess it’s working…at least for a twelve second conversation that took place one day last week it is.

How do you react to people asking you about FM?

It’s Like Thunder(Clap)!

If you follow my Twitter or Facebook page, you will know that I have been nagging everybody to support and promote our ‘Make Fibromyalgia VISIBLE’ Thunderclap; and with 14 days to go, it’s time I started nagging you!

I REALLY want to hit 200,000! Please help.

I REALLY want to hit 200,000! Please help.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (which we have blitzed!), Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Clap 1

Click on this picture to support and promote the Thunderclap.

What is THIS Thunderclap?

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

clap 2

Click on this picture to support and promote the Thunderclap.

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

Click on this picture to get full-size header to save and upload to your cover photo.

The message will be published on every supporters’ Facebook page and/or Twitter feed (because we have reached the goal number) on May 01 at 12:00 AM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

clap 3

3. You can write a blog post to let all your followers know about the project.

clap 4

4. On May 1st, upload the cover photo to your Facebook page (AND upload your VISIBLE Army picture to your profile photo)

Our goal: to no longer be ignored! Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

 

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

An Oxymoron? Realistic Hope

Cheerleader_2_1While improvement is reasonably common for FM patients (insert CHEER!), a return to your pre-illness level of health is rare, says Dr Bruce Campbell of the CFIDS and Fibromyalgia Self Help website. In his experience with several thousand people, Dr Campbell estimates that progress usually tops out at something like 50% to 60% of normal. There are people who do even better, but they are rare.

will

Further, it has been observed that people with FM often have an inaccurate sense of their level of functioning. People frequently over-estimate their functional level by 5 or 10 points on the websites 100-point Rating Scale and occasionally are 20 to 25 points too high. (Note: If you would like to get a check on your self-perception, ask one or two other people to rate you. It is a great way to remain realistic!)

The challenges you face may make your chances for significant improvement easier or harder than those of others. Here are some important factors:

1) Severity

The impairment FM has a wide range. The bottom line for improvement: some climbs are longer than others.

2) Co-morbid Medical Issues

Some people have just one major medical issue: FM. But many have more health issues. Some of the most common other medical issues include sleep disorders, orthostatic intolerance, food and digestive problems, migraine headaches, thyroid problems and clinical depression. The implication for improvement: It’s simpler to deal with one problem, more complicated to address several.

3) $Money$

Having adequate money reduces stress as well as providing access to medical help, medications, adequate food and good housing.

4) Support

People’s family situations differ as well. Some feel understood and supported, while others are challenged to have family understand and believe them. In addition, because FM may often be severe, people can feel isolated. The level of support a person experiences varies greatly. Other people can provide practical help, understanding and encouragement; living without support creates challenges. Isolation forces people to do more for themselves and often leads to discouragement.

5) Stability

Predictability and routine are two factors that make improvement easier. The amount of stability varies from person to person. Some people with FM are able to live in one place over time and their family situations are stable. Others have to deal with several to many changes: one or more moves, the loss of important people in their lives, etc.

6) CONTROL

Taking responsibility for those things that you can control is a big factor in improvement, perhaps the most important. How we live with FM can affect symptom level and even its course.

Realistic Hope

Positive Attitude_100109aSome factors may be out of our control, but we can affect others. Those who do well share a positive attitude AND a willingness to adapt.

This is called having realistic hope. It combines two apparently conflicting parts: acceptance and belief that improvement is possible.

Acceptance means acknowledging that life has changed. Instead of living as if you were well or searching for a miracle cure to restore you to full health, people with this attitude accept that it is necessary to live differently, for now and perhaps for the long run. At the same time, they have a confidence that they can find ways to make their lives better.  

Realistic hope is different from both resignation and from the search for something that restores a former level of health. Both of these other approaches often lead to helplessness. Realistic hope, in contrast, gives people a way to help themselves and to regain a sense of control.

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