Energy Makers Eroding in Fibromyalgia

There has been a lot of increased activity in the world of research and Fibromyalgia in the past few years. Here is an interesting article from the Fibromyalgia Network.

Six years ago, researchers showed that the muscles of fibromyalgia patients had a substantial drop in the number of mitochondria, the part of the cell known for its energy-producing abilities.
Click here to read the latest research being done on this - and to see that your muscle fatigue and weakness is in your cells and not in your head!

Why and How?

During one of the many middle of the night awakenings I had last night - (and every night) - as I adjusted my soft pillows under every possible inch of my body, I tried to imagine what is going on inside me that makes everything so painful. How can my incredibly soft wonderful pillow top mattress covered with soft down pillows and Egyptian cotton sheets, feel as painful as trying to sleep on a cliff face of jagged bedrock?  As I sat in the waiting room of the doctor's office this morning, and my elbows made the mistake of trying to take their ease on the armrest of the chair - searing, electric pain shot through my whole being. I had forgotten to put something down to cushion the blow. Oh how I miss being able to cross my legs while sitting down when wearing a dress - it is too painful for my knees to touch anything, including each other. The simple pat on my shoulder or arm from a friend or a colleague has me hiding embarrassed whimpers and grimaces of pain. The accidental bump from strangers on the busy street are excruciating. Why? Why? How could I have gone from being a normal person to this?
Scientifically, they are beginning to understand that the fibrotastic are not like normal people. Our central nervous systems register abnormally high pain responses to otherwise non painful stimuli. The body's normal chemical responses to fighting pain are all diminished in those with fibromyalgia. This is what we know. But it isn't just about being touched. Yes, our clothing hurts our skin, but why are light, sound, and smell amplified? Why do we suffer migraines and Irritable Bowel Syndrome? Why do we feel as though we are sick with a terrible flu? Why do we suddenly begin to sweat excessively, or have limbs that cease to function? Why do we lose our cognitive abilities and have diminishing gray matter in the brain? Why do we have severe sleep disorders and chemical sensitivities? Why do we gain weight in spite of the fact that we don't eat? How did we get this way? Who can fix us? And how do we get the non-fibrofabulous to understand how truly devastating, painful, debilitating this illness is, when we seem to look so normal? Everything about this is so complex... one wants it to be simple...  about some aches and pains, stiffness in the joints.. and yes, we get that too -- but there is nothing simple or easy to explain it all, the pain is deeper than muscles and tendons - and it is more than just widespread pain... Medications help lessen the pain, but it never stops... so why do we have it - where did it come from - and how can we make it go away?

I Love My Sister - She is Fibrotastic!

Today my sister I were emailing back and forth - both of us having pretty bad fibro flare days this week. I asked her what she was going to do about her fibro-fabulous life -here is her reply -
"I'm going to do what I've been doing the last 20 yrs lol! About the same as you! Do what I can do. Rest when I have to. And deal with and treat the pain the best I can! Try to get my stress under control.  And try not to complain too much lol! Try to eat, and and live the best life I can in spite of it! Find joy where I can in life! From my friends and family! My furry children! And be grateful for all I have! Fake it in other words lol! And be there for my best sissy to love, help and support her anyway I can!"

My sister and I both have fibromyalgia. She is cursed with far more migraines than I - so I think she has it much worse than I do. I love my sister - and on most days, both she and I keep a 'look at the bright side of life' kind of attitude about things. When things get really really bad, we are there to listen to one another. I know how lucky I am to have someone who really truly understands what I mean when I say that the trucks got me last night - or that I have fallen and I can't get up.

Thanks Sister. You keep me laughing -- and I always want to be strong to be there for you when the trucks get you. I hope you have more good days than bad very soon.
Love and gentle hugs :)

From Fellow Fibro Blogger - A Fun Fibromyalgia Quiz

I thought this fun fibro quiz from the Fibro World Blog (The Adventures of Dot and Fibro Mom) - would give at least a few of you a laugh today -- and which of us can't use a some laughter?

Thank you Dot and Fibro Mom for sharing your stories with us.
Tired of those boring quizzes filled with sterile medical info?
Here's a 10 question quiz about fibromyalgia to test your ability to separate fact from fiction.

1. Savella is:
a) an orange exported from Spain
b) one of the three FDA-approved drugs for fibromyalgia
c) Shakira's back up singer
d) Mexican resort famous for its organic cuisine
e) a character from 101 Dalmatians

2. A physiatrist is:
a) a hip hop spin doctor
b) a personal trainer in New York City
c) a physician who specializes in physical medicine and rehabilitation
d) a doctor who specializes in wrists
e) a massage therapist with physical therapy certification

3. A fibro flare-up is:
a) an anger management issue
b) an accidental Fourth of July explosion
c) an allergic reaction to carbohydrates
d) a sudden worsening of FMS condition
e) eczema rash caused by wearing synthetic fabrics

4. Which of the following are symptoms associated with fibromyalgia:
a) chronic muscle pain and muscle spasms
b) chronic fatigue
c) insomnia and sleep disorders
d) myofascial pain
e) all of the above

5. Which are the following is not a symptom associated with fibromyalgia:
a) chronic headaches or migraines
b) irritable bowel syndrome
c) depression
d) sneezing
e) dizziness

6. Which of the following foods should a FMS sufferer avoid:
a) eggplants
b) anything containing sugar or high fructose corn syrup
c) chocolate
d) potatoes
e) all of the above

7. Which medication is sometimes helpful in treating FMS:
a) Mirapex
b) Provigil
c) Adderal
d) Flexeril
e) all of the above

8. Fibro Fog is:
a) greenhouse gas linked to dry cleaning establishments
b) dense mist found in the vicinity of Irish peat bogs
c) hangover from too much Dutch gin
d) mental sluggishness related to fibromyalgia
e) condensation on the inside of windshields of new cars

9. A rheumatologist is a doctor who is a:
a) specialist whose diagnosis of fibromyalgia will help with a disability claim
b) specialist who can prescribe medication and physical therapy for fibromyalgia
c) researcher of rheumatic fever in children
d) specialist in dance injuries frequently sustained during a rhumba competition
e) both a and b

10. A comment that a fibromyalgia sufferer would love to hear:
a) I baked you a fresh loaf of gluten-free bread
b) I know you can't make it to my wedding and you will be terribly missed
c) I can see you are in pain so I'll come back later
d) You don't look like you weigh 170 lbs
e) a,b,c, and maybe d

Answers: 1.b 2.c 3.d 4.e 5.d 6.e 7.e 8.d 9.e 10.e
Scoring: Add up one point for each correct answer and use the scale below.
9 -10 Expert, or a fibro sufferer?
7 - 8 Good, a possible fibro relative or friend?
5 - 6 Fair, an informed bystander -- nice to meet you!
1 - 4 Please update your fibro facts at WebMD's website
You can visit Dot and Fibro Mom's Blog by following the link below
http://www.fibroworld.com/fibromyalgia-blog/2010/1/30/wow-finally-a-fun-fibromyalgia-quiz.html

National Pain Foundation's Pain Patient's Bill of Rights

This is from the website of the National Pain Foundation - you can visit their website directly by Clicking Here

1.Patients have a right to proper, respectful, informed and nondiscriminatory pain management and care.


2.Patients have a right to choose and access health care providers who can provide proper, respectful, informed and nondiscriminatory pain management and care.

3.Patients have a right to have their pain managed with collaborative and multidisciplinary efforts.

4.Patients have a right to have their questions and concerns about pain and pain treatments addressed.

5.Patients have a right to ask for and receive a referral to a pain management specialist.

6.Patients have a right to receive accurate and understandable information about their pain, their health, their diagnosis, their prognosis, their treatment, their health care providers and the facilities in which they receive treatment.

7.Patients have the right to receive knowledge and information about all pain treatment options available to them before giving informed consent.

8.Patients have the right to participate in their pain treatment decisions. If patients cannot fully participate in their pain treatment decisions, patients have the right to be represented by conservators including family members and/or guardians.

9.Patients have the right to make informed decisions about their pain treatment.

10.Patients have the right to speak confidentially with their health care providers about their pain conditions and concerns; however, the privacy of this information can be compromised in certain situations such as a workers' compensation claim.

11.Patients have a right to have their pain and the conditions that cause their pain examined regularly and their treatments adjusted for continued or improved pain management.

12.Patients have the right to read and make copies of their health information, pain history and relevant records.

13.Patients have the right to ask their health care provider to amend or correct any information (both pain-related and not) in their health records with the understanding that a health care provider cannot change an original report.

14.Patients have the right to refuse suggested methods of pain treatment.

15.Patients have the right to have their pain-related medical bills and costs explained to them.

16.Patients have the right to complain about or appeal issues related to their pain treatment, health plans, health care personnel and health care facilities.

17.Patients have the right to objective and timely internal and external reviews of any complaint or appeal related to their pain treatment, health plans, health care providers and health care facilities.

Fibro Collaborative Webcast

Watch the The Fibro Collaborative Roadmap for Change: A Call to Action for Fibromyalgia - February 5th live webcast by Clicking Here
This link will take you to a brief registration page - (name, email address) and once you register you can view the webcast.

Disorder or Disease?

I was questioned today about calling Fibromyalgia a 'Disease' - rather than term more commonly used - 'Disorder'. While Fibromyalgia is often referred to as a disorder, I believe it more rightly belongs under the definition of disease. The overwhelmingly universal symptom or feature of fibromyalgia is pain - or 'dis - ease' .

The word 'Disorder' is a newer term, often used for illnesses where the origin, duration, or physiological basis of an illness is unknown. It is also most often used in connection with illnesses of a psychological or mental nature. So for me, the use of the word Disorder is another way to minimize the true nature and impact of fibromyalgia. It keeps this invisible illness in the realm of 'all in the patients head".

The word Disease is used in connection with ill health, an abnormal condition that causes discomfort or dysfunction. Ill health, discomfort, dysfunction, abnormal - all words that I associate with fibromyalgia. And though we do not know the origins of fibromyalgia, we certainly do know a great deal more about the physiological mechanism then we used to.

We need to raise awareness about fibromyalgia so that a cure can be sought and found. A cure is more likely to be looked for when we look at it as a 'disease' than if we think of it as a disorder. Do you agree?

Too Too Large A Cost

I hope and pray that the story in video is unique in the world of fibromyalgia - but because so much of what is said here, most fibrotastics have experienced at one time or another, I think it is important to include it among today's video clips.

Fibromyalgia-Lisa's Story

This is the Face of Fibromyalgia [Awareness Day 2009]

Life Changing

This video is about a girl who was diagnosed at the age of 14. She has asked that people please watch it - she is committed to spreading fibromyalgia awareness. I hope you will watch it all the way through - for yourself, and to honor a young woman whose life changed much too soon..

M.E/cfs Fibromyalgia EDS - Bad day!!

So What Is It Like Anyway?

They say a picture is worth a thousand words - so I thought I would post this video clip that a young girl made of her mother on a bad fibro day. For the fibrotastic, you will no doubt see yourself in this video - for those of you who know and love a fibrotastic person, but have never seen them when they are having a terrible flare - I hope this will give you a small glimpse into what your friend or loved one is going through. Fibrotastic people, I love you - I know how courageous you are every moment of every day. Gentle hugs and feel good wishes.
Elise

Fibromyalgia...go ahead bring on the rain!

Fibromyalgia Awareness

What We Have Lost

A few days ago I read an article in the Fibromyalgia Network Journal. It was written by a therapist, who also happens to be fibrotastic. She wrote that it is so important for us to grieve what we have lost because of fibromyalgia. Have you looked at all you have lost and grieved it and then been able to move on? For me, I find that I am always in the midst of experiencing the loss of some new part of my self and my life. Perhaps that is why it has not been so cut and dry as, list my losses and allow myself to grieve and move on.
We are all different of course, but I am guessing that there are quite a few losses that we (the fibrotastic) all share. A pain free day for instance. Can you remember your last?  And all of you who are fibrotastic people, you know what I mean by pain - it looks nothing like the commercials for popular fibromyalgia drugs. We don't just ache all over. Most of us are fighting to live through and with and in spite of pain of the debilitating variety.

Have you had to give up doing things you used to love to do? Your career, your art, your hobbies, your social life? Have these things become impossible because of pain, exhaustion, the necessity of bathroom mapping, hyper-sensitivity to light, sound, smell, touch?

Have you taken the time to grieve your losses? Or are you like me, still struggling not to lose everything, even while watching the life you have built, the life you have loved, be stolen away from you? How do YOU cope with all the losses? I would love to know :).

What Do You Do When Everything Is Just Too Much?

Fibrotastic friends - what do you do when every sound is excruciatingly loud and painful, when every smell is so strong that it makes your head pound, when sunglasses aren't enough to stop the pain of too much light in your eyes, and when the lightest touch on the arm from your loved ones causes you to wince with pain? What are your coping mechanisms? My children and family members know that they need to be careful how and where they touch me. Children have a tendency to poke your shoulders or upper arms to get your attention - something that can bring me to tears on some days. I have to remind my children with great frequency. But outside of my family, I don't mention it. In work and social settings, people hug or pat you on the back or touch your arm or hand -- and it hurts. I never say anything - I am embarrassed I guess... or don't want to have to explain. How about you? How do you cope with the sensory 'too much-ness' of everyday life - and the painful normal social contact ? I would love to know :)

Resources for the Fibrotastic and Those Who Love Them

Over the coming days I will be adding some resource links that I hope you will find useful. Two of my personal favorites are already posted. The first is the Fibromyalgia Network. This is a member supported organization. The membership fee is low - and it allows the Network to function without sponsorship from advertisers (ie - pharmaceutical companies).
They send out a journal several times a year, which includes a list of currently prescribed medications being used for fibro patients, what they are used for, their benefits, common side effects - and listed in order of efficacy as reported by the membership who is using them. They will also send you a list of meetup support groups in your area, as well as member recommended physicians. I have found them to be a great source of information and am quite glad that I became a member.

I have also included a link to a multimedia interactive Continuing Medical Education program for physicians on Fibromyalgia. It has a lot of important information for the physician on diagnosing the disease, but also lots of great explanation of what is now known about this neurological disease of the central nervous system, which for the last 100 years had been thought to be a rheumatological disorder like arthritis. I hope that you will find these links a good starting place. I hope my fibro fatigue and fibro fog levels will allow me to post some other interesting links for you in short order :).

Facing The Day

Having hoisted and rolled your fibrotastic body from the bed, you are now faced with the moment of truth -- force yourself to get up and go about the business of the day -- or get back into the bed as your body is screaming for you to do. Oh my dearest fibrofabulous friends, I know how difficult that moment is. If you are unfortunate enough to suffer the dreaded fibro migraine, on top of all the body pains - then your answer is clear. There will be no going forth. For most of the rest of us, there is no choice to be had - we must force ourselves to dress and get out the door to work. Unless you have successfully fought for disability - then you, like me, summon up your resolve and draw on reserves of strength you didn't even know you possessed.. and you go forth... sometimes limping and hobbling... always hurting... but full of determination to face another day living the fibrotastic life. Give yourself an oh so gentle pat on the back, it will give you encouragement and help you as you press onward. You are fibrotastic - and you are amazing :)!

Morning

The first of my 3 alarms goes off at about 5:15am. I have to wake the first of my three kids so that he will make his school bus. I am sure that my 96 year old mother-in-law moves with more ease and grace than I do. I can't imagine anything could be more glamorous than the sight of me trying to roll and hoist myself off the bed in the morning.
Ah dear fibrotastic friends, don't you love the term 'stiffness'? Stiff-ness - the state of being stiff. If you are like me, you probably find that term comically inadequate when trying to describe the kind of near rigamortis that can settle into your limbs and joints. Is it possible that our muscles, tendons and ligaments simply contract and seize up during the night, and then somehow quickly petrify themselves? I would gladly have massaged my thighs, knees, shins, calves and feet so that I could maneuver my body off the bed with greater ease- if only my upper body, neck, back, shoulders, arms and hands, were not also completely seized up. So there I am, a wooden beached whale - unable to move, and wondering if there is a pill somewhere in my drawer of prescription bottles, that will help me get rid of the 'stiffness' and get on with my day. Now, if only I could roll over and get out of the bed to look....

Welcome to Living A Fibrotastic Life :-)

I can't even remember where and when the fibro monster caught me. Just like most people who are living with fybromyalgia, I spent many years going from doctor to doctor, undergoing test after test - all very expensive and not particularly illuminating. Then one day, I was sent to yet another specialist by my primary care doctor. He put it all together and gave my ever growing list of bewildering symptoms a name. Fibromyalgia.

Now, I never thought that I would decide to keep a blog about anything - much less about the disease I am living with. So why write about Fibromyalgia instead of adopting internationally, or acting,directing, producing, running a small not for profit arts organization - or any of the other things that fill my life?  Because I am now trying to be all, do all, live all of those facets of my life - with an invisible, misunderstood, debilitating disease - Fibromyalgia.

I hope that sharing my life with fibromyalgia on this blog, will be helpful for others who struggle to live their lives with this disease. I hope you will feel less alone. I also hope that it will offer insight into the disease to those who love, work with, care for, someone with fibromyalgia.