FMS | PainMaps.com: A New Nerve Pain Resource Site

Image from PainMaps: http://www.painmaps.com/

If you are like me, then living in a world of pain is just part of the package of your existence.  Pain is pain, no matter how it manifests or what it is labeled: Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFIDS), Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Irritable Bowel Syndrome (IBS), Osteoarthritis, Neuropathic Pain, and Complex Regional Pain Syndrome (CRPS) as well as many others on the ever-growing list of syndromes and disorders.

I know first-hand that living with an invisible illness, which chronic pain of is, can mean being disregarded, misunderstood, or even blatantly being called a liar or crazy or whatever else makes someone else feel better for not being able or knowing how to help. This is one of the reasons why I shifted my blog’s focus to discussing living with FMS, because I understood that there were others going through similar experiences.

We, who are living with pain, need more community as well as resource outlets. This is why I was so glad when I received a message from Jessica Mendes, the founder of PainMaps.com, a resource site dedicated to providing resources for those who experience and those who want to understand chronic pain.

Mendes, who is a ghostwriter and intuitive translator, has been living with CRPS for many years, and began PainMaps as a way of providing outreach with an alternative touch; it’s about allowing ourselves to rethink how see, understand, approach, and care for pain, particularly (but not exclusively) in regards to CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).  It is a collaborative site that invites contributions for all those who would care to share their experiences and knowledge.

Harkening back to my Boston days, I’d have to say that I am wicked excited about this site, and hope you will be as well.

 Let’s build more community by venturing new paths! Visit PainMaps.com!

Until Next Time,

D.

FMS | Fibromyalgia Can Make You a Weather Psychic

 

All right, I have decided to admit it:  fibromyalgia has made me a weather psychic.  

I am being absolutely serious here.  Having fibromyalgia has meant not needing to consult the weather report.  I know what the weather will be like the next day based upon changes in my FMS symptoms the day before. It’s that simple.

Although there is no specific reason found, the fact is that people who suffer chronic pain are able to sense changes in the weather before these changes are perceptible to others.  Some explanation by way of changes in air pressure. According to David Borenstein, MD, FACP, FACR, a rheumatologist and past president of the American College of Rheumatology, barometric pressure (weight of atmosphere that surrounds us) is likely what affects people the most, particularly people with chronic pain because “sometimes nerves can become more sensitized because of injury, inflammation, scarring or adhesions.”

Q: Okay, I can predict the weather.  The symptoms still suck, so what can I do?

Well, according to the linked WebMD article above, there are measures that you can take to help you with dealing with the weather changes:

  • Stay warm (to help ease pain in cold weather)
  • Try to prevent swelling (if that is an issue for you)
  • Keep moving (even if it’s the last thing you want to do)
  • Improve your mood (while the changes can feel unpredictable and can make you nervous, you do have control over how you respond to these changes.  Work on smiling.  I do. Every day).
  • Realize that the pain is temporary (of course, temporary may be a while, but it is still temporary, so keep smiling).
  • Don’t give up (This is my added thing. Look for the positive in the moment).

Image found: http://msbmore.wordpress.com/ (Check out fellow blogger: Ms. B. More!

Q: I was newly diagnosed/ I’m not sure if I get it–I don’t have arthritis or any old injuries.

If you have been recently diagnosed, then welcome.  It’s good to know that it’s not you and you’re not crazy. If you don’t get it for whatever reason, then this may be why:

  • You’ve not had the chance to track your symptom patterns on multiple levels.

What I mean is that when you are first dealing with FMS symptoms, they can be overwhelming and seem inexplicable.  You may just want to end the pain or get sleep or stop feeling nauseous or be migraine-free, etc.

You may not think about all the factors that may be contributing to your symptoms being more or less aggravated, such as food, activity level, vitamin deficiencies, allergies, recurrent exposure to stress (work/relationships/news/travel), weather and other environmental factors, etc.

Fibromyalgia symptoms are unique to the individual, which is why I think it can take some time to understand just what is affecting you how, and then what to do about it.

Changes in the weather/season, however, is something that many people with FMS have recognized as a contributor to increased symptoms.  These changes can mean:

  • Change in Sleep Cycle
  • Change in Circadian Rhythm
  • Pro-inflammatory Cytokines

For more detailed information on these changes and the specific types of weather changes that can aggravate symptoms and lead to flares, read “Does the Weather Affect Your Fibromyalgia Symptoms” by Dr. Rodger Murphee at TheFibroDoctor.com

 

Believe it or not, predicting the weather is really just your body giving you a warning sign.  It’s letting you know CLEARLY that you are potentially heading into a period of flares, so it is best to take preventative actions.  That’s all there is to it, at least in my book.

Learn to enjoy your psychic ability, disturb your friends with your accuracy, bring it out as a conversation starter or a topic changer…Whatever you do, smile about it, laugh about it, be with it.

It’s your body, you must live in it.  So, live happily as you walk your path.

Until Next Time,

D.

 

P.S.  ATR Challenge (Day 25):  What is right is my taking the time that I need, my accepting the support I receive, and my smiling through both pain and joy.

 

 

ATR Challenge Days 15 & 16

Once we open our eyes to a new day, let us not forget that, from that moment forward, we have choice.

We have choice in how we experience ourselves and our world. We have choice to hold on or to let go of that which burdens us.

Recognising that free will exists is what is right every day. Free will means the choice to walk our paths as we desire, to experience life as we wish, to love ourselves and others openly and unconditionally.

Today, I have woken up to the wonders of the mind, to how quickly a single thought can change an entire outlook, to how a single action can be a blessing for the day, to how consistent gratitude can reshape the heart and free the mind.

What about you?  How have you woken to see the world today? What have acknowledge to be right in your life? And for what are you grateful?   

FMS | Yoga in Bed & ATR Challenge Update!

I have been a seeker and I still am, but I stopped asking the books and the stars. I started listening to the teaching of my Soul. ~ by Rumi 

Today, the yoga mat looks too far away–to be honest, for two days I denied the existence of my mat…What mat?–and I don’t know that I feel like excessive movement is an option for me today, much like yesterday and the day before that.

Still, I am into opposite action, so I unroll the mat.  Like the walls and most everything else in my room, the mat is  pink, a nice loving colour, and I need some unconditional love right about now.

Fun fact: I’ve practiced yoga since the age of 3

I take a moment just to be in tadasana, listening to and regulating my breathing while centering my core.  Today, given my level of pain and fatigue, I will only do a modified Surya Namaskara or Sun Salutation–slowly.

—-

 

So, Why Yoga? And How Does FMS Fit into All of This?  

As I’ve mentioned in an earlier post, yoga is extremely useful for people who suffer from chronic illnesses, which would include fibromyalgia.

Just search online for yoga and fibromyalgia and you will see the many sites that have dedicated a page or two to discuss the benefits of yoga.  One of the first is a 2010 article by WebMD that discusses a study done on yoga and women with fibromyalgia.  Here is an excerpt:

Women with fibromyalgia can reduce symptoms of the disease and improve their function by practicing the mind-body techniques of yoga, a new study says.

Researchers in Oregon who enrolled 53 women aged 21 or older for the study say that women who participated in a “Yoga of Awareness” health program showed significantly greater improvement infibromyalgia symptoms

Women in the “Yoga of Awareness” class participated for eight weeks in a program of instruction and exercise.

Classes included 40 minutes of gentle stretching poses, 25 minutes of meditation, 10 minutes of breathing techniques, 20 minutes of teaching presentations on using yoga principles for coping, and 25 minutes of group discussions, in which participants talked about practicing yoga in their homes.

So, What Can You Do?

Well, I always believe in meeting yourself where you are.

  • Locate and Assess your level of pain.  What and how much you can do depends upon your understanding of where and how severe your pain is.
  • Ask yourself lots of  questions, like “Can I  leave the house? Can I get out of bed?”
  • Depending on your answer, use the yoga resource that is most beneficial to you.  If you can go to a recommended class, then go.  If you cannot, YouTube and Amazon.com could serve as potential resources–of course, use your own judgement to decide what practice is safest for you to do.    

 

Below is an example of a resource that may be useful for you if you are experiencing low mobility, i.e. getting out of bed is not an option.  It is the Yoga in Bed Morning Stretch Series; there are 6 videos durations ranging between 6-11 minutes.

Good luck!

—-

ATR Challenge Update: Days 12 & 13

Wow, it continues! 🙂  Yesterday, I was unable to do much of anything, but I think I have already made up for it today.

So, What is right in my life?

Increasing Self-Love |Improving Self-Efficacy | Believing in Self-Worth

Connecting with the New| Reconnecting with the Old | Externalizing Love

Extending Help | Breathing Sunshine | Sleeping to Rain

Watching Cartoons | Laughing with my Child-Self | Laughing with my Pain

Laughing with my Hope | Laughing with my Sincerity | Laughing with my Life

Discovering Happiness | Enjoying Happiness | Accepting Sadness

Comforting Anger | Welcoming Mindfulness | Welcoming Internal Peace

Welcoming solitude | Welcoming togetherness | Welcoming Simplicity in

Everyone | Everything.

—-

In essence, it’s all good, because I believe and know it is–even if I’m stuck in bed. 😉

Until Next Time,

D.

FMS | The Moments You Love to Hate: How to Deal with Flare-ups Before & After They Happen

This picture is a summary of my present state.

(Forgive any typographical errors below. I am tired.)

There is a reason fibromyalgia is considered an invisible illness.  If you were to meet me in my everyday life, more than likely it would not be evident to you that I have an illness. Actually, usually when I feel my worst, I tend to dress my best–lots of colourful pretty dresses–and so it has been for the past two days.

I am in the midst of a flare-up.  I cannot say that it was sudden or unexpected or something like that.  I’ve been running myself a bit ragged, and having started classes again means that I am outside every single day…which is never a good thing for me given my immune system.

Still, I am far from saddened by this development, because I was already expecting it to happen, which is winning half of the battle.  The other half is taking precautions. Sure, you may not be able to stop a flare-up, but you can make an effort to diminish its impact on your life.

Image found: http://nickdeck.com

So, what do I do when I recognize I am going to have  a flare-up?

  • Pare back on everything that is unessential – If I don’t have to do it, then it remains on the back-burner until I can.
  • Start consuming even more fresh fruits/veggies and water – I try rid myself of anything that may be adding to internal discomfort.
  • Put myself on a schedule – Given that fibro fog can be a way of my life, I already know that I am going to be more forgetful and less able to concentrate. So, writing everything down that needs to be done for the day is one way to help me keep on track.
  • Disregard my sleeping schedule/ Sleep when possible & necessary – Wait…what?  How does that make sense?  Well, because I already know that I am heading into a moment of high insomnia, it makes little sense for me to stress about whether or not I am sleeping when I am suppose to be sleeping.  To me, there is a lot more stress to be had from worrying about sleeping than simply accepting the fact that I may not sleep.  I cut stress wherever I can: internally and externally.
  • Walk & stretch/ Generally increase activity level – It may seem counterintuitive. However, walking and stretching (increased activity) helps me to diminish the pain experienced daily.
  • Practice Opposite Action As a dialectical behavior therapy advocate, I use the skills of this approach in my daily life.  Opposite Action or Opposite to Emotion Action is exactly what it sounds like…doing the opposite of what you feelFor example, if I were feeling angry, then I would engage in actions that were opposite/opposing anger, such as smiling or watching a comedy.  With fibromyalgia, it means that I make an attempt to do exactly what I think/feel I cannot. Writing this post is an example of Opposite Action.

 

Truly, however, there is no right path to take in dealing with your FMS flare-up.  

You have do what works for you and what feels best to you.

Check out this article by FM Net News: “Hurdling the Impact of Painful Flares”

Until Next Time,

D.

Update:

ATR Challenge Day 11 – Doing what I can (is what’s right in my life). 🙂

Many, Many Thanks to My New Followers!

It’s one of those hazy Roman September mornings: the kind that isn’t so hot that you feel like your only option is to remain indoors, fixed permanently in your bed or under your shower.  Still, it is the kind that makes you a bit lazy about getting up or even bothering with finding mental clarity.

Rome, on these kinds of days, becomes a centrifugal blend of noises: the distinct songs of cicadas, the cobblestone scraping of straw brooms, the random knock of a hammer, the friendly greetings of neighbours, the midday ring of the church bells and the frustrated blares of traffic.  It’s that kind of morning.

Leaves stand still, birds have gone incognito, laundry dries on clotheslines, and there isn’t a soul in sight–even if voices can be heard in between the sadness of moving sirens.

I’ve woken–sort of–to this kind of day: depleted of energy and bogged down in thoughts.

Go through the routine: meditate, stretch (on bed, too tired to stand), effectively putz around room and find: necessary papers, missing perfume bottle, a collection of hairpins, and worn out fortunes from the local Japanese/Chinese restaurant that has yet to reopen since the start of summer and is “Chiuso per Ferie,” feel pleased that the room has been swept, books have been stacked, and mind has woken just a bit more.

I take a look at my computer: glance at Facebook, post something personal and then professional; think about email and decide to avoid it for now; visit school/work blog and then personal, and find myself at this moment of…

Gratitude.

Thank you to my new followers for taking a chance on supporting my blog.  Thank you to my old followers for your continued support.  Thank you to my visitors for acknowledging my presence.

All of you have made this hazy day much less hazy–

You let me know that I continue to take the right steps on my path.

Until Next Time,

D.

P.S.

Interested in the Gratitude Journal in the image above?

Visit Rosetta Thurman’s Happy Black Woman for more details.

P.P.S.

ATR Challenge Day 10: Getting up & Getting Grateful! Thanks! 😀

 

FMS | Was it Chickenpox? ( Article: Is Herpes Virus Connected to Fibromyalgia?)

Image found: http://krnb.com/

Seriously, now.

Another balmy Saturday. Me? Glued to computer screen with fingers on auto-type while my mind wonders about what fruit will be available in the rapidly depleting fruit section of my local supermarket.

In between finger taps, the consistent yappage of my neighbour’s invisible dog, and my acknowledgements that the world isn’t so bad after all, a random thought comes to mind. Well, not really a thought, but a memory; one that I thought was pretty useless…until now [cue dramatic suspense music here].

Picture it, me at 16 and in my last semester of high school…confined to my bed because of the chickenpox.

Yes, I know.  Chickenpox is something you get as a kid, not as a teenager when everything is all about image–actually, I didn’t really care, but still–and the sight of a pimple can send even the most popular of cheerleaders into a moment of panic.

But that was soooo long ago.

It’s one of many memories I shoved far into the black hole of my mind, so much so that even when I see the resulting scars on my face, I don’t register them as having anything to do with chickenpox.  It’s my defense mechanism checkmate, especially because I am into denial and apparently amazingly good at suppression.

Let’s get back to this moment though, where I am sitting on my bed and typing this post that I’d like to be less than 300 words.

For whatever reason, the words chickenpox and fibromyalgia flashed across my mind and thus my auto-typing fingers tapped them right into Google search and hit the Enter button.

The result?

Well, it seems that a lot of people have been wondering about the relationship between chickenpox and fibromyalgia, although there doesn’t seem to be a great deal of research about it.

Still, it might help to check out the links below to understand why some are wondering:

Is Herpes Virus Connected to Fibromyalgia?

Virus Related to Fibromyalgia?

30 Day Challenge: Acknowledge the Right of Your Life

"Black Health Is..." Found: http://cdn.madamenoire.com

“Black Health Is…” Found: http://cdn.madamenoire.com

To My New Followers: Welcome to my blog! I am very happy and grateful that you decided to follow me on my journey and hope you will share yours with me as well. 🙂

This is just a brief post about a challenge that I have decided to begin tomorrow. First, however, I just wanted to note that I am one week away from completing my 30 Day Prayer/Meditation Challenge–I really struggle with sticktoitiveness and so I am really proud of myself for coming this far and also for my recent decision to continue the Challenge indefinitely.

I think sometimes we just come across something that works with who we are and are necessary for where we are on our path.  I am glad that the daily practice of prayer/meditation has been helpful for me in clearing my psychological, spiritual and physical space and in paving the way for the new challenge I’ve decided to do.

So, what’s this new challenge?

It’s a challenge that I’m calling: Acknowledge the Right Of Your Life Challenge. Perhaps I should make a hashtag out of it for Twitter and spark others to share in the Challenge.

So, what’s the goal of this challenge?

Simple.  Every day, for the next 30 days, I will write, at least, one thing that is right (positive/awesome/good) in my life.

Why do you want to do this challenge?

Because, from what I understand of myself and looking at the world around me, it is an easy thing to get caught up in what is wrong (negative/awful/bad) with our lives.  

So, I’ve decided to challenge myself for the next 30 days to identify what is working in my life.  It’s simply another step on my path toward self-acceptance and self-actualization.  I hope you will join me. 🙂

 

If you do decide to join me on this challenge, send me a message or comment here and let me know!

And remember, there is always a path to be found…

Until Next Time, 

D.

FMS | How to (Re)Build a Future…

As a person living with fibromyalgia, I spend a great deal of time thinking.  My thoughts go from the mundane (what can I eat today that won’t cause me to suffer?) to the extraordinary (what would it be like if I could fly alongside the birds outside my window?)…okay, maybe not so extraordinary.

The point is that when my body won’t act according to the demands of my brain, I spend my time reflecting on the present and then on the future. In so doing today, I came to realise that something within me had shifted.

For the firs time in a long while, I was thinking, whole-heartedly and fearlessly, about my future.

I was imagining myself travelling.  No, not just around my neighbourhood, but to distant places like Japan and South Africa.  I was seeing myself working again with young people, writing, teaching, meditating, advising, and generally being at peace and being happy (which I am now)…

It was amazing.  

And then I realised that this, this freedom to imagine, to dream, was something that I had thought had been taken away from me by illness.  I had preoccupied myself with thinking that I could do no more than I had already done with my life.

After all, I had overcome some major challenges with my illness, had given up my old ways of living, had moved to another country, immersed myself in a new culture and language, and begun studying again.  I’ve even been able to work a bit.

Isn’t that more than enough to hope for?

No, it isn’t.

I still have my dreams and my goals AND I can still realise them.  Even if I don’t exactly know the how of each step that it will take to achieve my dreams, I know that the first step is simply to acknowledge that I CAN achieve them, regardless of illness.

So, live whole-heartedly and fearlessly today, despite the challenges, despite your inner critique, despite the naysayers. Having fibromyalgia doesn’t mean that you have to stop living!

Live for You, live for Now, and live for Tomorrow!

FMS | Article: Aerobic Exercise ‘Most Effective Weapon’ for Fibromyalgia

It’s a bright sunny morning here in Rome and, thankfully, not too terribly hot.  Over the last month, I’ve been engaging in a renewed program of incorporating daily walks as a part of my self-care management.

Now, I don’t mean just taking a walk down the road to the neighbourhood grocery store.  I mean taking a proper walk of between 1-3 hours (dependent upon weather and time).

Back in 2008 when I was finally diagnosed with fibromyalgia, my body was in its most unhealthy state.  I had gained a tremendous amount of weight as I could barely get up due to my fatigue and the pain was unbearable. I simply didn’t see how I could get my body to move and to go about life as usual.  Not only that, the drastic changes in both my weight and overall health had been devastating to my self-concept and self-esteem.

You see, just prior to beginning my journey to becoming a therapist, I worked as a personal trainer and fitness instructor.  I prided myself on my level of strength and stamina.  I prided myself on my little need for sleep (of course, I was in my twenties) and was content with the way my body functioned.

Enter fibromyalgia…and the pictured changed.  I was in misery.  It took me almost a year after my diagnosis (2009) to figure out a strategy to get my body and life back together.

I didn’t want to be a walking pharmacy anymore, dragging around a heavy frame that was only becoming heavier and making my symptoms worse.

I decided that I would walk…even if it was the last thing I wanted to do.  I knew that I would be in misery if I attempted to join an exercise program and I don’t believe in dieting.

Most importantly, I knew that walking was still something I could do. It hadn’t been taken away from me.

I started out with small goals, solicited some friends to join me, and began a 10 minute walk program.  That’s right.  Ten whole minutes.  Early in the morning, a couple of times per week, we would meet up and walk together for 10 whole minutes.  Eventually, we increased the time and frequency, and even (gasp) began a jog/walk program. 😉

Fast-forward five years and here I am, walking for hours.  My body has benefited tremendously from the small decision I made back in 2009.  The simple decision to walk. I take one medication for my illness as opposed to several that I had been taking back in 2008.

You see, we can spend our time trying to find the right medication(s). We can go from doctor to doctor.  We can bemoan our circumstances and ask ‘why me?’ forever or, at least, until our last breath.  None of that really will change anything in the end if we don’t look at how we can take control over our bodies ourselves and lives.

Don’t just leave it up to the latest pill you can pop.  Don’t just give up and say ‘what’s done is done’.  Don’t just decide that you are unlucky or fated to living your life in a way that is displeasing to you.

Decide that you can change it. Decide that you can control it.  It’s your body and your illness.  Decide how you want to live with it…happily.

There is always a path to be found…

Until Next Time,

D. 

Click on the link below for the article!

Aerobic Exercise ‘Most Effective Weapon’ for Fibromyalgia (Excerpt below)

“There is no magic drug against fibromyalgia and, in my opinion, there will never be. Psychotherapists don’t work miracles, but psychotherapy can help and, in a few cases, turn people with fibromyalgia into nonpatients. Drugs may help, but patients don’t like them,” said investigator Winfried Häuser, MD, from Technische Universität München in Germany, who has published widely on fibromyalgia.

“Aerobic exercise is the most effective weapon we have; healthy people profit from continuous physical exercise, and so do patients with fibromyalgia,” he explained.

Dr. Häuser presented an overview of research on fibromyalgia treatment here at the European League Against Rheumatism Congress 2014.