SEARCH

THE FIBRO BLOG
About

We're a mother-daughter team.

Dot is a 20-something fibro survivor and Fibro Mom is a 60-ish, sometimes crabby caregiver who works part-time.

We talk about our daily triumphs and setbacks in coping with a chronic and invisible illness.

Together, we bring two perspectives, patient and caregiver, in a dialogue that we hope informs, engages and entertains.

Note: We recently changed our name from thefibroblog.com to fibroworld.com.

SUBSCRIBE
Popular Posts
Alltop, all the top stories
Categories
Powered by Squarespace

Welcome fibromyalgia survivors, caregivers and anyone with chronic pain.

Saturday
06Mar2010

Fibro Flames in My Veins

by AuthorDot on DateMarch 6, 2010

Is there a fireman in the house?!All my energy and concentration has been focused on Fibro World in the last several weeks.  And I've been loving it!

Fibro World is the sole creative and challenging project I've been able to work on in the past few years (aside from playing the Game of Life with Fibro Mom, of course) but alas, it seems I've gone overboard.

Although I have been using a voice recognition software program, I've overused my hands and arms and triggered a serious fibro flare up.

The voice recognition software has enabled me to use the computer on a prolonged basis (more than five minutes) for the first time in years.  I speak the words I'd normally have to type out and the text appears on the screen. I thought that by eliminating typing/keyboard action, I was not using my hands very much. 

Mighty Mouse

But I still have to use a mouse.  And unfortunately, the clicking/pressing action of the mouse triggered burning pain in my hands and forearms that has become constant.

Acid Reflux of the Arms

I usually describe the daily pain and muscles spasms in my neck shoulder and back as "clenching, charley-horse-like-cramps, sharp, penetrating." 

This new pain in my hands and arms, though, is like fire in my veins.  It's deep.  I feel like I'm being burned by acid from the inside out. 

I'm hoping that this pain can be controlled somehow.  I'm trying to finish this post so I’ve tied a gel cold pack to each of my arms and stuck Lidoderm patches on each forearm to tamp down the pain.

One of my friends, who works at a disability resource center, recommended an online store that sells independent living aids: EnableMart.com.  I just received their assistive technology catalog in the mail and will be exploring devices that can replace my traditional mouse. If anyone has recommendations, please let me know.

Chill Pill

This has been traumatic because the only part of my body that has been free from pain is the elbow and below.  I somehow thought my hands and arms were immune to fibromyalgia pain.

Hopefully, I will be able to post again soon, meanwhile, I'm giving my arms a break to let the flames die down.

Comment1 Comment | |
Thursday
04Mar2010

Dot and Fibro Mom play the Game of Life and Lose!

by AuthorFibro Mom on DateMarch 4, 2010

Photo by dbkingThe Game of Life is a board game where players make decisions of how to gain the most tiles and most money.  Rite Aid Pharmacy ran their own promotional game loosely based on the game of the same name. 

Customers received game tokens with each purchase along with a game card to match the token to a prize. 

At first glance, the game was ridiculously tedious -- tearing open the tiny tokens (1/2 " by 1-1/2") along perforated lines and matched to one of several spaces for each prize on a game sheet.  The pictures and the numbers had to match. 

There were 13 possible prizes -  gift cards, Wii, kitchen makeover, mortgage payment, other treasures ranging from $2.00 to $250,000, and best of all: a G37 Infiniti Convertible to die for.

Well, it was a snowy winter, and there wasn't much to do in the way of entertainment so Dot accepted the challenge and began tearing and pasting.  I shopped at Rite Aid.  Cans of nuts, light bulbs, moisturizers, Doritos, chocolates, and toiletries filled our closets.  We collected piles of duplicate tokens, which were worthless.

Just One More!

We finally got to the point that we had filled each category except for ONE piece. 

So many prizes within our reach -- opening each token became an excruciatingly exhilarating then painfully deflating roller coaster. 

Finally, on February 28, the contest ended and we kept muttering, "just one more token, just one more token!"  Our life was over.

Playing the Fibro Game of Life

How reminiscent that experience was to our own Fibro Game of Life!  We have categories too that require a bunch of tokens to win amazing prizes like:

  • no more pain
  • no more migraines
  • no more nausea
  • no more photo sensitivity
  • no more fatigue, and
  • no more sleepless nights. 

On our Fibro Game card, each prize is also filled with many tokens and we have piles of duplicate tokens (the worthless ones). 

Tokens and More Tokens

Over the past three years, Dot has had several medical appointments a month with referrals from one doctor to the next and some unexpected hospital visits.  So we managed to collect many duplicate tokens of doctors: 

  • 3 neurologists
  • 1 neuro-psychiatrist
  • 1 psychiatrist
  • 2 psychologists
  • 1 opthamalogist
  • 1 neuro-opthamologist
  • 4 physiatrists
  • 1 gastroentorologist
  • 2 rheumatologists
  • 1 internal medicine doctor
  • 1 family doctor and
  • 8 emergency room doctors.

We have tokens for every doctor except the one that will award Dot the grand prize: The Fibro Cure. 

Pass the Meds

We also have a ziploc bag full of medication tokens for prescription and non-prescription drugs.  But the golden one is still missing, so no prizes here either. 

In real life, Dot has a file drawer filled with empty bottles of used medication and a box of discarded meds that either were either ineffective or had severe side effects.

Complementary Offers

Dot has also had a busy time trying to find the winning token for complementary medicine: 

  • 2 acupuncturists
  • 2 medical hypnotists
  • 1 myofascial release specialist,
  • and at least 6 physical therapists. 

Dot's current physical therapist may be the winning token so we are very hopeful.

The Big Win?

We count ourselves fortunate because in the Fibro Game of Life, there is no time limit.  Unlike the Rite Aid promotional game, we have years and years to keep collecting tokens. 

Perhaps a token to the Mayo Clinic or the Cleveland Clinic or Johns Hopkins Hospital will produce the big win. 

Yes, Dot, all we need is one more token but meanwhile, we have a free ride on the Fibro Merry-Go-Round.  So forget the Infiniti convertible!

 

CommentPost a Comment | |
Tuesday
23Feb2010

Fibro World Honored With Sugar Doll Award

by AuthorDot on DateFebruary 23, 2010

We are very honored to receive the Sugar Doll Blogger Award from Nancy at Chronic Connection.  We are so touched that such an accomplished fibromyalgia and chronic pain blogger has recognized us.  Thank you Nancy!

When we first began blogging a month and a half ago, we weren't sure if we'd even have an audience.  However, we've found so much more - a caring community of friends and readers.  We're grateful to you all.

In accepting the Sugar Doll Award award, we agree to list 10 things you may not know about us (in our case, 5 each) and then pass the award onto fellow bloggers that we love to read.

Fibro Mom

  1. I can bake a killer apple tart with gluten-free flour.
  2. I love eel and papaya, but not together.
  3. I've sucked and swallowed a raw turtle egg in Malaysia.
  4. I rode a hot air balloon over the skies of Kenya and hit a termite hill when we landed.
  5. My favorite TV show is Burn Notice.

Dot

  1. I love Swedish fish, snail mail and Skype.
  2. I've scuba dived at night with manta rays.
  3. I've ridden a yak, kissed a giraffe and been attacked by baboons.
  4. The last audio book I listened to and loved: The Hunger Games by Suzanne Collins.
  5. I have two beautiful grandparents who are both 95.

We've selected four recipients  - and the Sugar Doll Award goes to...(drum roll please):

Congratulations!  We can't wait to read 10 things about each of you.

Comment3 Comments | |
Friday
19Feb2010

New fibromyalgia drug JZP-6 (Sodium Oxybate) from Jazz Pharmaceuticals On Its Way

by AuthorDot on DateFebruary 19, 2010

Photo by ppdigitalMove over Cymbalta, Lyrica and Savella

A new fibro drug may be on its way.  The FDA has just accepted the filing by Jazz Pharmaceuticals, Inc. for a new drug application called JZP-6 (Sodium Oxybate) for the treatment of fibromyalgia (FMS).  The expected date for its release is this October 2010.

If released, this will be the fourth FDA-approved fibromyalgia medication.  What sets this drug apart from the three other fibro meds?  A new ingredient: Sodium Oxybate.

In two Phase III clinical trials, the Sodium Oxybate treatment "significantly decreased pain and fatigue, as well as improved daily function, patient global impression of change, and sleep quality." 

The Sodium Oxybate ingredient has not been evaluated by the FDA for treating fibro.  However, it has already been approved for treating narcolepsy and is currently marketed by Jazz Pharmaceuticals as Xyrem (Sodium Oxybate). 

JZP-6 Sodium Oxybate Will Take Over 15% of the Fibro Drug Market

Decision Resources, a market research firm for the biopharmaceutical industry, predicts that JZP-6 Sodium Oxybate, will account for more than 15 percent of the fibromyalgia drug market in 2018.  Analyst Andrea Buurma, B.A at Decision Resources states:
"Although factors such as safety, abuse potential and risk of illicit use will ultimately constrain its overall market potential, sodium oxybate's expected premium price will translate into robust sales, we expect sodium oxybate will be prescribed primarily by specialists to patients with the most severe fibromyalgia who are unresponsive to or cannot tolerate other medications."

Drug Downsides

By examining Xyrem (Sodium Oxybate), which is made up of Sodium Oxybate like JZP-6, we can get an idea of some of the potential downsides that the anaylst mentions:

  • Xyrem comes with serious warnings.   Side effects for Xyrem are severe with the worse being respiratory depression, coma and death.  Xyrem's warning box is extensive.
  • Inconvenient to take.  One dose of Xyrem is taken at bedtime and the second dose requires waking up 2-1/2 to 4 hours later.  

Is JZP-6 Right for You?

Hopefully, the clinical trials will give a clear indication of whom should take JZP-6 and what the side effects are so fibro patients can make an informed decision about whether the benefits outweigh the risks.

Apparently, some people with fibro may already take Xyrem off label.  Personally, I tried each FDA-approved fibromyalgia drug - Cymbalta, Lyrica, and Savella - as they came to the market in hopes that one would provide real pain relief. 

I am currently taking Savella, and have had the best results out of the three with the most tolerable side effects.  It has reduced my overall body pain but has not had any effect on my fatigue, sleep disorder and myofasical pain centers in my neck, shoulder and back. 

Because I have a severe fibro case and since JZP-6 Sodium Oxybate is said to be effective in all three major fibro problem areas (pain, fatigue, sleep), I would seriously consider trying this new fibro drug if my doctors recommended it.

Cause for Celebration?

Do those of us living in the Fibro World have reason to rejoice that even a potentially lethal drug like Sodium Oxybate is available for fibromyalgia treatment?  Ironically, yes.

It is an indication that research and money is being directed towards finding treatments and drugs to help fibromyalgia and chronic pain sufferers.  Perhaps it is only a matter of time before something that is both safe and effective hits the market. 

Would you be willing to try JZP-6 Sodium Oxybate?

Comment2 Comments | |
Wednesday
17Feb2010

Fibromyalgia is not for the fainthearted

by AuthorFibro Mom on DateFebruary 17, 2010

You mean, there's no cure yet?Yesterday, out of the blue, my husband (and father of Dot) asked, "When will she be well?" 

I responded, "Maybe never." 

He then launched into a discourse about negativity and pessimism and why he thought I could damage Dot's health with such a negative mindset.  The car accident took place more than three years ago, so why hasn't she healed?  Is it too many medications? Wrong diagnoses, fear, depression, what?

Of course, from his way of thinking, his reaction is understandable and perhaps rational for someone who feels that acknowledging pain and discomfort prevents healing. 

He feels that Dot should sleep on schedule, eat three square meals, not drink Coke, exercise ("squeeze your butts!"), and push herself to do more. 

Ignore the pain. Simple.

In his world, bright sunshine is good for you and does not cause eye pain.  Bending over to pick things up strengthens muscles, and doesn't trigger spasms.  Reading a book doesn't cause migraines; it engages the mind. 

It's all mind over matter. 

Perhaps in the real world, but really not workable in the Fibro World.

What is chronic pain and is it curable?

So I turned to Google to find out if there is a cure for chronic pain in general.  Am I assuming the worst when there are obvious things Dot and I have not explored?  Is her neck pain imagined?  What about those weird pelvic pains, the pain in the hands, feet, knees, hips, chest, jaw eye, now ear? 

The word chronic does mean "being long-lasting and recurrent or characterized by long suffering," and here's a definition from the FamilyDoctor.org website:

 "Although fibromyalgia causes symptoms that can be very painful and uncomfortable, your muscles and organs are not being damaged. This condition is not life-threatening, but it is chronic (ongoing). Although there is no cure, there are many things you can do to feel better."

No magic bullet?

Ha, so there is no cure, no magic bullet that we somehow overlooked as we visited doctor after doctor, physical therapist after physical therapist, physiatrist, psychiatrist, psychologist, neurologist, gastroenterologist, rheumatologist, acupuncturist, podiatrist, ophthalmologist, gynecologist., otolaryngologist...

Yes, and don't forget all those vitamins:  B complex, Calcium with magnesium, CoQ10 with Alpha Lipoic Acid Acetyl L-Carnitine Hcl, D3, Gamma-Aminobutyric Acid, Omega-3, 5-HTP and 10 billion probiotic organisms.  (By the way, these lists will be part of the next Fibro Spelling Bee.)

Fibro World welcomes adventurers!

Fibro World is not for the fainthearted looking for the simple cure.  It is inhabited with those adventurers who are willing to try anything (unfortunately limited by financial considerations) to make their lives better. 

After all, chronic is a long time and there are a confusing amount of doors to pass through, winding paths to follow and dead ends to overcome.

All in all, the journey is still filled with hope (not tons of hope, of course, but a respectable amount) and Dot's next path leads to a series of Botox shots to minimize her neck pain which seems to be center triggering all kinds of nasty complications. 

(The nurse at the hospital just called to say that she will submit the authorization forms to Dot's health insurance company as soon as Dot's doctor completes his notes.  After it's approved, we can schedule the appointment -- but that's handled by someone else.  But it will all come together eventually!  We hope.) 

Are there any chronic pain people out there who have had Botox injections?  Please let us know your experience!

Comment4 Comments | |
Page 1 2 3 4 5 ... 6 Next 5 Entries »