Saturday, December 31, 2011

What's your New Year's Resolution?

My New Year's Resolution is to start looking nicer.  By this I mean putting on my make-up, dressing in nicer clothes, and doing something with my hair.  I am doing this because if I look nicer I will feel better about myself.  If I feel better about myself I think it will make it easier to handle the pain, fatigue, and all the wonderful stuff that goes along with fibro. ;-)

I'm celebrating a new year that will bring a whole new me and a happy new year for us all!

Happy New Year!

Sunday, December 25, 2011

Merry Christmas!

Merry Christmas!!!
     Merry Christmas!!!
          Merry Christmas!!!
               Merry Christmas!!!
                    Merry Christmas!!!   
                         Merry Christmas!!!
                              Merry Christmas!!!
                                   Merry Christmas!!!
                                        Merry Christmas!!!

Wednesday, December 21, 2011

Classes over for the holidays!

I have now completed my first semester of graduate school.  I'm so excited, and so exhausted.  I just hope I made a good grade in my last class.

Now that classes are over, and I know what to expect from grad school, I can be regular with my blogging again.

Friday, October 28, 2011

CFS/FM Serenity Prayer

~Author Unknown

Lord, grant me the serenity to accept
The things I cannot change,
The courage to change
The things I can,
And the wisdom to hide
The bodies of Doctors I shot
When they said,
"You're perfectly healthy,
It's All In Your Head."

Thursday, September 15, 2011

Invisible Illness Week - things you may not know about Fibromyalgia

Guess what? This week is Invisible Illness Week and here at Smart Fibro Chick I am going to be covering Fibromyalgia. I am covering bipolar at my blog Survivor and covering EDS at my blog Please Tape Me Back Together.

I've got quite a few invisible illnesses, other than EDS and fibromyalgia. My other invisible illnesses include: PCOS (Polycystic Ovarian Syndrome), Chronic pain, Epilepsy, TMJ Dysfunction, Bipolar, Migraines, Bruxism, IBS (Irritable Bowel Syndrome), SAD (Seasonal Affective Disorder), SI (Self-Injury), social anxiety, panic attacks, C-PTSD (Complex-Post-Traumatic Stress Disorder), and Hashimoto's Thyroiditis.

So, without further ado...

1. The illness I live with is: Fibromyalgia. It is also called fibro or FMS. It commonly occurs with ME/CFS, but it is not the same thing.

2. I was diagnosed with it in the year: 1996, my sophomore year of high school.

3. But I had symptoms since: childhood

4. The biggest adjustment I’ve had to make is: Loss of mobility and super high levels of pain from EDS and fibro.

5. Most people assume: That fibro is a “waste-basket” diagnosis, assigned to patients doctors can’t fix, don’t want to deal with, or who are hypochondriacs. That isn’t true. That really isn’t true. Ask a fibromyalgia sufferer in a flare if that is true. Stand back, though, because she will probably throw something at you. Fibromyalgia has diagnostic criteria that must be met in order to get the diagnosis. I will be covering these in a later blog.

6. The hardest part about mornings are: The pain and stiffness and that horrible unrested feeling. I never wake up feeling rested. This sounds dumb, but I didn’t know other people felt any different upon waking until recently.

7. My favorite medical TV show is: Scrubs. I used to watch House until they did the two part episode with House in the mental hospital. It gave me horrible flashbacks and I haven't watched House since.

8. A gadget I couldn’t live without is: My laptop-my connection to the outside world. I have a lot of fibro and spoonie friends on Twitter and Facebook. I couldn’t make it without these guys! Also, I have made some endearing friendships through snail mail. I can’t handwrite anymore from my EDS, so I also use my laptop to type out letters.

9. The hardest part about nights are: Trying to get comfortable when you hurt. There is no such thing as a comfortable position, and when you find that “almost comfortable” position, it only lasts a few minutes before it is incredibly uncomfortable again.

10. Each day I take __ pills & vitamins. (No comments, please) 27

11. Regarding alternative treatments I: Meditate, drink ginger tea for pain (I am right now!), had a friend do Reiki once, lots of vitamins (sublingual Vitamin B Complex does wonders for energy), herbal tea for relaxation, and yoga when I can (which isn’t often).

12. If I had to choose between an invisible illness or visible I would choose: Invisible illness, as long as I got rid of my bipolar.

13. Regarding working and career: I went on disability in 2000. I cannot work from my bipolar, EDS, C-PTSD, epilepsy, and fibro.

14. People would be surprised to know: How incredibly bad fibro hurts and how much fatigue it causes!

15. The hardest thing to accept about my new reality has been: The uncertainty from minute to minute. I may have been at a 7 (out of 10 on the pain scale) all day, then BAM, I suddenly hit 9. When I hit 10 I usually am screaming, delirious, and/or passing out. My “normal” is a 7/10 on the 1-10 pain scale.

16. Something I never thought I could do with my illness that I did was: Go back to grad school.

17. The commercials about my illness: Are a joke! They make it look like you pop a pill of Lyrica or whatever they are advertising, and then you are “all better.” I’ve taken Lyrica before. You know what it did to me? It made me fat, but still in pain, and still with loads of fatigue. (Lyrica’s #1 side effect is weight gain, for those of you who didn’t know.)

18. Something I really miss doing since I was diagnosed is: planning things. I can’t plan anything because I never know what I will feel like at that time.

19. It was really hard to have to give up: Planning. I’m a planner. When I say I’m a planner I mean it. When I was 10 years old I sat down with the closest community college’s schedule and made out my college schedule. That was after I made out my high school schedule, too. Remember, I was 10. Of course, it didn’t turn out like I planned, but that is beside the point.

20. A new hobby I have taken up since my diagnosis is: Since I’ve had it since childhood doesn’t any hobby I have go here? I like to write, scrapbook, pen pal, blog, cross-stitch, and read.

21. If I could have one day of feeling normal again I would: Go hiking in my cute black boots I found with Darla.

22. My illness has taught me: To spend my time creatively instead of moping. I am rarely bored.

23. Want to know a secret? I feel horrible about this, and I've only admitted it to DH, but I used to say that people with fibro were overplaying their pain. Even though I was in constant pain, I wasn’t disabled from it. I thought it was the same for everyone. I wish I never thought something like that. Maybe that’s why I hurt so badly now, perhaps it's from what I said then, when I just didn't understand what real pain was. The fibro and EDS didn’t disable me until around the time I met DH.

24. But I love it when people: say “Oh you have fibro? I heard that really hurts. Is there anything I can do for you today?” I hate it when people act like fibro isn’t real. I got into a Twitter altercation with a famous Star Trek actor (I didn’t know who he was at the time) because he made fun of people with fibro on Fibro & ME/CFS Awareness Day 2010. I actually got so many threats from Trekkies after that that I had to temporarily protect all my tweets for a week or so. There were so many threats it seriously freaked me out.

25. My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~JoDee Messina

26. When someone is diagnosed I’d like to tell them: Educate yourself on information! There is no cure for fibro, so if a product, book, e-book, or anything else, promises to cure it, they are lying. Read all you can on fibro. Make friends with other people experiencing the same thing. If something sounds too good to be true, it probably is. There are a plethora of snake oil cures out there, begging to cheat the next desperate person, who is willing to do anything to make the pain stop. Have I tried any snake oil cures when I was desperate and in severe pain? Yes, I have. Even though I knew better, I still did it. I ended up having an allergic reaction to it, but thankfully it wasn’t a severe reaction.

27. Something that has surprised me about living with an illness is: Most people just don’t care. For instance, DH and I both have epilepsy. One day we were over at a lady’s house and he just fell over and started seizing. What did she do? She got up and walked out of the room to get a glass of water, even stepping over him! People just don’t care. I had to cradle his head in my arms. If she’d asked if she could do anything I would have asked for a pillow or couch cushion, but she didn’t even do that. What if I wasn’t there? He can only hit his head so many times before something really bad happens.

28. The nicest thing someone did for me when I wasn’t feeling well was: When Jim surprised me with my bear Eliza wearing one of my old ACE bandages because she was “sick,” too. It was so cute.

29. I’m involved with Invisible Illness Week because: I want to educate others on fibro and let other fibromites know you are never alone in this fight!

30. The fact that you read this list makes me feel: Thankful! Thank you for reading my blog!

Throughout the week I will be doing blogs on Fibromyalgia for Invisible Illness Week.

So you don’t miss a single entry this Invisible Illness Awareness Week and if you haven’t already; I’d like to remind you to subscribe to my blog, through Google Friend Connect, Networked Blogs, RSS feed, or through email.

Wednesday, August 24, 2011

My 1st blog award!

I'm so excited!  I just won my first blog award!  The award is called the 100 Best Sites for Fibromyalgia or Chronic Fatigue Information.  This is the first blog award I've won since I started blogging.  I'm #42 on the list.  I invite you to check out the 100 best sites that won the blog award.  You can find it here.  Here is my lovely blog award:

Tuesday, August 23, 2011

ME/CFS: What's the deal with the many names?

ME/CFS has many names.  It goes by: ME/CFS, Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-Viral Fatigue Syndrome (PVFS), and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).  Where did they get all these names, and how is each name different from the other?

Chronic Fatigue Syndrome (CFS) is has been used since 1987.  Most people in the USA still call ME/CFS Chronic Fatigue Syndrome.  CFS was first associated with chronic active Epstein-Barr virus infection.  It was later found that not all cases of CFS were associated with the Epstein-Barr virus, and that the cause of CFS was actually unknown.  Many people do not like the term CFS because it trivializes what a ME/CFS patient goes through.  When someone says they have Chronic Fatigue Syndrome, most people think "Well, I've been tired before, too, and I didn't go to the doctor for it."  They don't realize the difference between a well person being tired and someone with ME/CFS being extremely fatigued.  In my opinion they are in two different worlds, and can barely even be compared.  Even having fibromyalgia and EDS, I still never understood what the fatigue of ME/CFS was like.  When I developed ME/CFS I learned what real fatigue is. ME/CFS fatigue means sometimes I don't have the energy to roll over in bed, even if my face is stuck into the pillow and my neck in a twisted position.  Fatigue is just as debilitating as pain.  There are times I can't walk to the bathroom from the fatigue, and instead I have to slowly crawl.  Exercising is supposed to be good for you, but it just wears you out for days every time when you have ME/CFS.  I flare with fibro or ME/CFS (sometimes both) when I do too much.  ME/CFS is a lot more than just being tired, and that's what people think when they hear Chronic Fatigue Syndrome.

Myalgic (my-Al-jik) Encephalomyelitis (en-SEF-uh-lo-MY-uh-LY-tis) (ME) is the term used in the UK.  It means "inflammation of the brain and spinal cord with muscle pain."  It is a controversial name, as ME has not been associated with pathology of muscles or Central Nervous System (CNS).  I know there are a lot to remember as far as abbreviations go.  I'm trying to make it as straightforward as possible.  Some doctors and researchers say that ME is a better name than CFS because it concentrates on more than just the fatigue.  UK researchers say that ME is a lot more serious than just fatigue.  Some people prefer to call ME myalgic encephalopathy (en-CEF-uh-LOP-uh-thee), because it does not imply inflammation.  Many doctors and patients in the UK are okay with calling it ME/CFS, but not CFS/ME.  They say that CFS/ME puts too much emphasis on fatigue, when, again, researchers say ME/CFS is a lot more than just debilitating fatigue.  The way they look at ME/CFS  in the UK is different than the way they look at in the USA.  In the USA we concentrate a lot more on the fatigue of ME/CFS, while in the UK they try to look at the whole package.

Post-Viral Fatigue Syndrome (PVFS) This is the name the World Health Organization uses.  It isn't technically correct, in my opinion, because not all ME/CFS cases occur after a viral infection.  Mine did, but there are plenty of other cases that don't.

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) isn't a very popular name, but it is used some in the USA.  The Chronic Fatigue Immune Dysfunction Syndrome Association of America (CFIDS Association of America) uses this term.  They use this term because their research, advocacy, and awareness campaigns all revolve around the immune dysfunction side of ME/CFS because they see that as the root problem of ME/CFS.

The system of naming things is called nomenclature.  There are a lot of names for ME/CFS.  Here in the USA there is a push to make ME/CFS the official name, instead of Chronic Fatigue Syndrome.  What do you think?  Do you agree that ME/CFS is the best name?  Do you like another name better?

Tuesday, August 16, 2011

How many people have fibromyalgia and ME/CFS anyway?

Hello fibromites and ME/CFS fighters!  I found a neat website for Canadians today and wanted to share it.  It's called  I looked around it some and it seems to be very informative and user-friendly.  I recommend the site whether you live in Canada or not.  The site includes a quiz to print and take to your doctor if you suspect fibromyalgia.  It also includes a fact I did not know: an estimated 1 million Canadians suffer from chronic pain due to fibromyalgia.  In a country with a population of 33.7 million, the number of people with fibromyalgia is staggering.  Fibromyalgia is much more common that doctors first realized.  This is of course, is bad, because people are in pain.  It is also good, though, because with such a large portion of the population having this illness, we will get more research done.

Here are some other sobering facts:

  • 1 in 50 Americans, or between 3 and 6 million people in the USA have fibromyalgia
  • More than 1 million Americans have ME/CFS and 80% of those are not diagnosed
  • 819,858 in the UK have fibromyalgia
  • 250,000 in the UK have ME/CFS 
  • 270,877 in Australia have fibromyalgia
  • 54,327 in New Zealand have fibromyalgia
  • 1,035,420 in Egypt have fibromyalgia
  • 937,159 in Turkey have fibromyalgia
  • 918,242 in Iran have fibromyalgia
  • 345,170 in Iraq have fibromyalgia
  • 387,869 in Afghanistan have fibromyalgia
  • 1,121,217 in Germany have fibromyalgia
  • 821,947 in France have fibromyalgia
  • 789,752 in Italy have fibromyalgia
  • 14,488,092 in India have fibromyalgia
  • 17,668,147 in China have fibromyalgia
  • 1,124,457 in Vietnam have fibromyalgia
  • 1,958,470 in Russia have fibromyalgia
  • 649,296 in Ukraine have fibromyalgia
  • 359,259 in Uzbekistan have fibromyalgia
  • 2,504,316 in Brazil have fibromyalgia
  • 1,427,759 in Mexico have fibromyalgia
  • 374,683 in Peru have fibromyalgia
  • 970,387 in Ethiopia have fibromyalgia
  • 112,966 in Somalia have fibromyalgia
  • 129,752 in Chad have fibromyalgia
  • 604,629 in South Africa have fibromyalgia
  • Fibromyalgia is most commonly diagnosed between the ages of 20 and 50 
  • 80% - 90% of all fibromyalgia cases are women 
  • 90% of ME/CFS cases are women 
  • ME/CFS rates are somewhat higher in Nigeria than in the USA, according to one study 
  • Fibromyalgia is most prominent amongst American women with Canadian women coming in a close second 
  • Fibromyalgia may often co-occur (up to 25-65 percent) with other rheumatic conditions such as rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis 
  • Women who have a family member who has fibromyalgia are more likely to develop fibromyalgia themselves 
  • Fibromyalgia is the 2nd most common ailment affecting the musculoskeletal system after osteoarthritis 
  • Fibromyalgia primarily affects women of childbearing age, but children and men may also be affected 
Wow, I know that is a lot to take in.  I had to do a lot of searching to find these statistics.  I'm amazed at how little we know about fibromyalgia and ME/CFS, yet so many people around the world suffer from it/them.  It seems to me like something this common would be a big pharmaceutical company's dream and we'd have loads of medicines for fibro and ME/CFS.  As it is now, we have three medications approved in the USA for fibromyalgia, and none for ME/CFS.  We need to do better.  I don't care if it is cured or just treated, as long as I don't have to deal with the pain, fatigue, and loads of other symptoms that go along with fibromyalgia.  Knowing that so many other people deal with this makes me feel less alone.  It also gives me hope that there will be some breakthrough research soon to help all of us suffering from fibromyalgia and ME/CFS.  

Sunday, August 14, 2011


Today my pain has been worse than normal, though not at flare levels.  To keep myself positive and concentrate on the sweetness in life, I am making a list of 10 things I am grateful for today:

1) my DH

DH and Niki

2) our kitty Sterling

Sterling, around 13 years old

3) our kitty Niki

Niki, 2 years old

4) having time alone with DH (priceless!)

5) my healing crystals
My crystals and hook necklace, both from a lovely friend
6) I've lost 19 pounds so far. For my readers from other countries, 19 lb = 1.357 stone = 8.618 kg.

7) I have two books on the way to me from paperbackswap

8) DH fixed my computer

My computer I decorated - close up

My computer I decorated


9) Netflix, where I can watch TV with my DH

10) I just opened a new issue of my favorite magazine I got in the mail the other day


Saturday, August 13, 2011

Are we supposed to exercise?

You've probably heard a lot about people with fibromyalgia and ME/CFS having problems when it comes to exercising.  People with ME/CFS tend to suffer from something called postexertional malaise.  Fibromites and people with ME/CFS suffer more pain after exercise and for a longer period of time than normal people.  The pain can reach excruciating levels for even days after exercising, and after only exercising a little bit.  We also have to work a lot harder to force our bodies to do the same exercises a person without fibromyalgia or ME/CFS has to do.  This is especially true if you have dysautonomia, a condition commonly found along-side ME/CFS.  Basically, even though exercise is good for us, it makes us feel really crappy.
What exactly is postexertional malaise?  Postexertional malaise is a hallmark ME/CFS symptom characterized by intense exhaustion for a period longer than 24 hours.  As you read all of this you are probably wondering why we are supposed to exercise when it is so hard on us.  Besides the usual (and very valid) reasons of prevention and management of diabetes, high cholesterol, heart disease, and weight; over time exercise will help us achieve lower pain and fatigue levels.  Weight loss can also decrease pain and fatigue levels.  There are many reasons to exercise, you just have to find what is important to you.

Postexertional malaise in people with ME/CFS causes a detectable difference in your blood.  Postexertional malaise in ME/CFS and the pain and fatigue, experienced by both fibro and ME/CFS sufferers, during and after exercising is not all in your head.  They are real, and they are a big deterrent to many of us when it comes to exercising.

We still need to exercise, though.  A good place to start is with a good physical therapist who understands fibro and ME/CFS.  In reality, not everyone gets to see a physical therapist, though.  Even if you do get to see one, he or she may not understand fibromyalgia and ME/CFS.  So what do you do?  My advice (remember it is only advice) is to start slowly, and be proud of what you can do.  Maybe today you could do five minutes of a gentle yoga video.  Awesome!  Don't look at it as you only did five minutes, celebrate that you were able to.  Sometimes a walk to the end of the block is a huge success.  The idea is to get moving.  It hurts to exercise and it seems counterproductive at first.  I won't lie, a fibromite's body doesn't get "used to" exercising very quickly.  Don't push yourself to do more than you can do.  Celebrate what you can do.  After exercising regularly for some time you will start to feel better during and after your work out.

What should you know if you haven't exercised in a long time?  Keep it non-impact to not jar your joints, and don't exercise too strenuously, or to exhaustion.  Yoga, ti-chi, pilates, swimming, and walking (that includes walking the dog) are all good ideas.  If you lift weights keep the weights small, i.e. three pounds.  You may not feel it while you are doing it, but you will later.  Don't do the same exercises two days in a row.  Let your muscles rest a day.
What do you do when you finish exercising?  The most important thing you can do is to stretch and stay hydrated.  Stretching your muscles will diffuse some of the pain that would be there the next day.  Take a cool or warm (but not cold or steaming hot) shower.  If you need to, rub in some Aspercreme or Biofreeze after you have cooled off.  Do not put it on before your shower, not only will it get washed off, but Biofreeze can burn (as can some other topical pain OTC medicines) in hot water.  Use a heating pad or ice pack, but do not use the heating pad where you used a topical pain OTC medicine i.e. Aspercreme, Biofreeze, Ben Gay, Icy Hot.  Do not tightly bandage an area you used a topical pain OTC medicine on as well, or put under tight clothes.

When I was in physical therapy I worked my way up in 5 weeks from Level 1 for 2 minutes on the recumbent bike to Level 5 for 10 minutes.  Three years ago I went jogging daily.  I can't concentrate on that, instead I have to concentrate on celebrating my successes.  My body isn't the same body it was three years ago.  Three years ago I wasn't dislocating joints from my EDS, and I wasn't in near this much pain; but I was very unhappy and lonely.  I'd rather be here in this point in my life than back when I wasn't so sick, but I was  alone in the world.  Okay, I'm starting to cry...time to change the subject!

I've gotten out of practice with my physical therapy.  I've decided to start in doing it a little bit at a time.  My goal is to do the first set of exercises my PT gave me three times this week.  Next week I will add in the other set on alternate days.  Eventually I'll be back on my stationary bike, which is jury-rigged into a recumbent bike.

So that is my goal of the week.  I will start Monday with my exercises.  Now, how do you or what will you do for exercise this week?

I want to point out that my advice is just that-advice.  Please consult a doctor before exercising or changing your treatment routine.  I am not a physician or physical therapist.  I am a patient who hopes that by telling my story and educating the public on fibromyalgia and ME/CFS I can help someone.

Friday, June 17, 2011

Clean teeth and oh what some B Complex can do!

I've been looking up different supplements today.  So far the supplement that looks the best for me is Magnesium Malate, which I found reviewed for fibromyalgia and ME/CFS patients here.  I've been drinking a lot of tea lately, so I've been brushing my teeth extra good.  I have a white smile with no cavities, and I want to keep it that way.  :-)  My toothbrush has been my best friend since I was six.  Yeah, my teeth are very white, but I also have brushed, flossed, and used Listerine or Crest Prohealth all my life.  So it's not like I don't keep them super clean.  It just annoys me when people say something to me about my teeth like I should feel guilty about it and then they only brush their teeth once a week and don't even know how to use dental floss.

I have been taking sublingual liquid B Complex and it has actually changed my life!  When people make those claims from a vitamin I usually have the *roll my eyes* reaction, but I tried taking this anyway and it's amazing.  I have the energy to walk to go to the fridge to get a soda, the energy to shower (though I still have to use my shower chair), the energy to do simple things for myself, like wash a glass or a saucer.  It's amazing!  I can't tell you enough how awesome this stuff is.  Here is mine:

my dad always warned me that if I made faces and got scared my face would stay that way

So I'm really excited about the B Complex.  Mine is sublingual, so I put it under my tongue for 30 seconds before I swallow it.  It doesn't taste good, but it isn't as bad as Women's One a Day vitamin mix.  I am amazed at the difference.  These changes are huge for me.  Since B Complex has been such a success I am very interested in Magnesium Malate and what it may be able to do for me.  Has anyone reading this tried it yet?  

Tuesday, June 14, 2011

Health Activist Writer's Challenge: I write about my health because...

Day 6  "I write about my health because..."  Reflect on why you write, in writing.  Meta!

I write about my health because I want to do three things: journal out my feelings; share my life with others who have fibromyalgia; make other people aware of fibromyalgia. ;-)

Saturday, June 11, 2011

Health Activist Writer's Challenge: Health Haiku

Day 5  Health Haiku. 5 syllables / 7 syllables / 5 syllables about your condition.  Write a few if you'd like.

Okay, I'm not good at haikus and over the years I've pretty much declared war on any teacher cruel enough to make me write one.  Then there is also the fact that I absolutely hate haikus!  Here goes my best try...

Pain and fatigue overwhelm me
Most days I am strong

This is me attempting a haiku

Thursday, June 9, 2011

Health Activist Writer's Challenge: Ludicrous Headline or Cure

Day 4  Ludicrous Headline or Cure.  Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it.  Can't find one?  Write your own.

I once had a comment on my YouTube video about fibromyalgia awareness that sunflower seeds are a cure for fibromyalgia.  Yes, I'm serious, someone actually left that as a comment.  They said that sun flower seeds cured their fibromyalgia and it will cure mine.  I have this to say: if sunflowers cure anything, it's a hunger for sunflower seeds!  Fibromyalgia has treatments, but does not have a cure.  I hate that many people in pain are taken advantage of, often by expensive supplement sellers or e-book sellers, that promise to cure fibromyalgia, or any chronic illness.  I have even been desperate enough to try one of these cures, even though I know better.  A person does silly things when they are desperate.  I ended up having a slight allergic reaction to the "medicine."  I also got a one month supply from the "inventor" for a trial basis.  I want to end this post with a warning to anyone who is desperate enough to try a "cure."  There is no cure for fibromyalgia, but there are treatments.  If you decide to try a "cure" anyway, please be careful, check for any allergic reactions you may have, and check with your doctor before starting anything new.  Take care my fellow fibromites!

Friday, June 3, 2011

Health Activist Writer's Challenge: Yahoo Answers Post

Day 3  Yahoo Answers Post - Pretend you are writing a question about your condition - it can be as silly/humorous as you want.  Now answer it.  (Remember: Your answer can be just as silly.)


Can you catch fibromyalgia from a toilet seat?  no
Can you catch it from having sex or sharing dirty needles?  no
Can fibromyalgia kill you?  no 

Fibromyalgia is not contagious.  You cannot catch it from a toilet seat, sex, or sharing dirty needles.  You may catch a lot of other things, though, say like hepatitis, from sex and/or sharing dirty needles.  Fibromyalgia will not kill you.  There are deaths related to fibromyalgia, like suicide, but fibromyalgia itself doesn't kill you.

Friday, May 27, 2011

Health Activist Writer's Challenge: Word of the Day Post!

Day 2  Word of the Day Post! Go to and write a post inspired by their WOTD - or grab a dictionary (or any book) from your bookshelf, open to a page, and write about that word. Can you link the word to your condition somehow?

I went to and the word of the day is:

 \DUH-juhn\ , noun;
A state or fit of intense indignation; resentment; ill humor -- often used in the phrase "in high dudgeon."

Higgins was so frustrated by such a basic error that he stormed out of the arena for the mid-session interval in high dudgeon.
-- Phil Yates, "Stevens begins to feel pressure as Swail stages customary revival", Times (London), April 29, 2000 
This woman is forever in a state of spiritual high dudgeon, and a list of her dislikes is as long as the Omaha phone book.
-- Jim Harrison, The Road Home 
What you see, they reckon, is all there is: a media star of fading allure--and shortening temper, if his dudgeon over a television soap-opera satire about him called "How was I, Doris?" (a reference to his fourth wife) is anything to go by.
-- "Gerhard Schröder, embattled chancellor", The Economist, September 18, 1999
The origin of dudgeon is unknown.

I was in a state of high dudgeon when I found out that fibromyalgia facilitates a loss in gray matter and premature aging of the brain.  How dare fibro mess with yet another part of me?  I admit, I was quite upset when I first heard about it, but I was more angry than sad.  I was pissed at fibro, for it changing my life, and now for it to be causing a loss in my gray matter and making my brain age faster.  It's just one more thing in a long list of what fibro can do to your body.  One study shows that gray matter loss is caused from low-dopamine in the brain.  We don't know yet if that is really the case.  It usually takes a lot of studies with the same result to know that something is true.  The longer you have fibromyalgia, i.e. you've had it since childhood, the more gray matter you lose.  The study I read says that people with ME/CFS do not have premature brain aging or loss of gray matter, while fibromyalgia has both.  I hope that someday soon, doctors will be able to stop this horrible result from fibromyalgia.

Homer Simpson's brain...and that's without fibro!

Saturday, May 21, 2011

Health Activist Writer's Challenge: Health Acrostic

Day 1  Health Acrostic - Write an arostic for your condition or the word HEALTH.

IBS (common with fibro)
Burning pain
Reynauds (common with fibro)
Old feeling (I feel ancient!)
Missing out on life
Youth stolen
Analgesics (all pain medications, including Tylenol, NSAIDs, and Opiates)
Lyrica (a FDA approved fibro med)
Glia (cells that play a part in the Central Nervous System) 
Individuals (don't let your doctor treat you like all fibromites are the same!)
Allodynia (pain due to a stimulus that does not normally provoke pain)

Mental fog (also called "brain fog," or in the case of fibro, "fibro fog")
Central Sensitization (entire central nervous system becomes sensitized to a stimulus, causing amplified pain signals)
Sick a lot

This was a lot harder than it looks!

Thursday, May 19, 2011

Health Activist Writer's Challenge: 30 Day, 30 Posts

Guess what?  I've got a new challenge.  It's called the 30 Day, 30 Posts, Health Activist Writer's Challenge.  So for 30 posts I'm going to be writing about fibromyalgia using prompts from from this website.

Day 1  Health Acrostic - Write an arostic for your condition or the word HEALTH.

Day 2  Word of the Day Post! Go to and write a post inspired by their WOTD - or grab a dictionary (or any book) from your bookshelf, open to a page, and write about that word. Can you link the word to your condition somehow?

Day 3  Yahoo Answers Post - Pretend you are writing a question about your condition - it can be as silly/humorous as you want.  Now answer it.  (Remember: Your answer can be just as silly.)

Day 4  Ludicrous Headline or Cure.  Do a news search and choose a ridiculous headline or proposed cure about your condition and write what you think about it.  Can't find one?  Write your own.

Day 5  Health Haiku. 5 syllables / 7 syllables / 5 syllables about your condition.  Write a few if you'd like.

Day 6  "I write about my health because..."  Reflect on why you write, in writing.  Meta!

Day 7  Leave your condition a text or voice mail.  Check in with your health by pretending you're leaving a quick note.  Bonus points if you find a way to record in audio-form too!

Day 8  Write a poem (5-15 lines) where every line is a health question.

Day 9  Health Activist Choice!  Write about whatever you want today.

Day 10  Post Secret.  You know the beloved post secret community?  Write down a secret that isn't really a secret.  Hint: A misconception about your condition, something people would think you'd be shy to disclose (but will!), or just something you want to shout from the rooftops!

Day 11  Revise your condition's Wikipedia page.  Pretend you're a Wikipedia writer - what sentence or paragraph should be included (in your opinion).  Has Wikipedia forgotten to include your condition?  Write a few quick facts and submit.

Day 12  Ekphrasis (writing about another art form) Post - Find a Flickr Image in Creative Commons that inspires you in some way (positively or negatively) and free write about it.  Give yourself exactly 15 minutes to write without stopping.  Don't think!  Brave bonus: Publish to your blog without editing!  (You can include a disclaimer.)

Day 13  Open a book to any page - take the first line you see.  That's the title of your blog post.  What does the blog say?  Write it in less than 20 minutes.

Day 14  Write a poem (5-10) lines where every line is a lie or misconception about your health condition.

Day 15  Two Sentence Story.  Tell a story with a beginning, middle, and end in only two sentences.  Get creative with semi-colons if you need to!

Day 16  Report This!  Write a blog where you're a news reporter presenting an invention or cure for your condition.  It can also be in the style of a Faux Press Release.

Day 17  Mindful Moment.  Describe something peaceful with as much sensory imagery as you can.  What are the sights, sounds, scents, and feelings?

Day 18  Your Daily Schedule.  Write a list of your daily routine from the moment you wake up until the moment you go to bed.  Be honest.

Day 19  Health Activist Choice Day 2.  Any topic you want.

Day 20  Describe your Writing Room.  What is in the room where you write your posts?  Are you in a crowded coffee shop, your desk at work,k or at the kitchen table?  Try to find and name an item in the room that is red, orange, yellow, green, blue, violet, black, brown.

Day 21  Free-Write about someone you admire.

Day 22  Prescribed!  Your doctor writes you a wacky prescription - what is it?

Day 23  Dr. Seuss Day!  Write a post with as many rhymes as you can.  It can be a poem with end-rhymes or a paragraph with internal rhymes.

Day 24  Best Moment of Last Week.  What was the best thing that happened to you last week?  Did you have an a-ha moment or get great news?  Write about it and relive it!

Day 25  Red Pen Day.  Find an old post of yours from months or years ago - revise it as radically as you can (use Track Changes in Word or red font on your blog).  What changes did you make?  What clarifications did you need?  Publish the new version.  Post both versions if you're brave.

Day 26  Spirit Animal Day.  Give you or your condition a spirit animal and write about yourself or it as though you/it are that animal.  What qualities of the animal do you or your condition possess that are positive?  How is this a metaphor?

Day 27  Quote Prompt!  Find a quote that inspires you either positively or negatively and write about it!

Day 28  "I used to be ____.  But I'm not anymore."  Write a poem where every line starts with the phrase "I used to be" and ends with "But I'm not anymore." (5-10 lines)

Day 29  Health Cliché!  What's a health cliché that really bugs you? What are you tired of people asking you or saying to you again and again?  Write it down.  Then reclaim it!  Take it back and turn it around so you make it something you could be comfortable hearing.

Day 30  Gobbledygook Day.  Make up a new word (it can be a combination of two words or complete non-sense).  What is the word?  How do you pronounce it?  What does it mean?  Use it in a sentence.

Thursday, May 5, 2011

Make a fibro friend laugh today

I came across something today that made me really LOL and I hope to get a chuckle out of you, too.  While we sometimes have to deal with so much serious stuff with fibro and all of the other diagnosises that we may have, that it is easy to forget to laugh.  So next time you have a friend who's in a flare, why don't you get her a pair of boobie hot water bottles from Pranksterhouse!  If my DH or a friend gave me these during a flare I'd probably laugh so hard I'd cry from pain.  Sometimes worse pain is worth it when it means you get a laugh!

Wednesday, May 4, 2011

Back after hiatus and drinking ginger tea for pain

I'm sorry it's been so long since I've been able to blog here.  Today I wanted to share a new pain fighting substance I have found.  Our friend Mary Lou, is very wise in herbs and such and is the one who gave me the idea for this.  Mary Lou told me to go to the grocery store and get a ginger root.  Then slice off some thin slices of ginger root and pour boiling water over it to make ginger tea.  DH made a trip to the grocery store for me today so that he could get me a ginger root.  Then when he got home he sliced off quite a few pieces, poured water over it, and put it in the microwave to boil.  He said he used the microwave last time, too, and it turned out great that time.  The tea is okay tasting, I've never been fond of ginger, otherwise I'd probably like it better.  The tea does make you hot, though.  Before you get your hopes us, it doesn't actually make you look hot, but makes you feel like your core temperature rose a degree.  I really doubt it does, but that's what it feels like to me.  DH made me another cup of it before I took a nap.  This one I had DH help me take a picture of, with a garnish of ginger root on the side of the cup and the ginger root itself is on the saucer so that you can see what it looks like.  I hope this can give someone else some pain relief.  Anytime I find something that helps with pain I will always let you guys know.  You'll hear from me again a lot sooner next time.
Ginger root tea for pain relief

Sunday, February 27, 2011

Fibromyalgia & Stress!

It's no secret that fibro and stress don't like each other.  Do you know why, though?  Stress releases certain chemicals, such as cortisol, GH, and norepinephrine.  Stress can cause many health problems, including, but not limited to: weight gain, high blood pressure, stroke, metabolic syndrome, poor sleep, immunity, anxiety, emotional eating, cognitive impairment, and you guess it...increased fibromyalgia symptoms.  What do you do about all this stress, though?  I've always been incredibly annoyed at doctors whose advice was simply to "decrease your stress levels."  I've felt like saying "Excuse me?  If I knew how to make less stress in my life there wouldn't be so much stress in my life!"

When we are stressed we become more symptomatic and that in turn causes more stress which causes more symptoms which causes more stress...  Yeah, you get it.  It's a viscous circle.

So what do you do to decrease stress?  That's a really hard question, because of the many causes of stress we face. I'm going to give a few stressful scenarios and some ways to decrease stress.  Hopefully this will get you thinking and you will be able to de-stress, if only a little, in your own life.

Scenario #1: You have to pick up your in-laws from the airport for a week long stay.  You feel that you will be expected to have a meticulous house and great home cooked meals for your mother-in-law to approve of the woman who married her son.  Possible Solutions:  Can your husband, older child, friend, or other relative pick up your in-laws at the airport?  How about one day instead of making dinner one night in the middle of the week, surprising everyone with a bucket of KFC fried chicken?  There are also a lot of easy recipes to be found on the internet, so you don't have to work hard to work hard to find cook for your in-laws.  There is a site for busy cooks here.  Another idea is to make chili or soup ahead of time and freeze it in containers.  Once you decide to serve chili or soup that day then get the containers out and put them in the fridge in the morning to thaw.  Then that evening before supper you can warm up the chili or soup in a pot on the stove.   Easy chili recipes can be found here and easy soup recipes can be found here.  Another option is to throw ingredients into a crock pot in the morning so that dinner will be ready that evening. Crock pot recipes can be found here and here.  I buy pre-made rolls in the freezer section when I can because they taste just as good as homemade.  If you want to serve dessert, most grocery stores and most large department stores (such as Wal-Mart) sell pre-made desserts in or near their bakery.  Can you enlist your children to help clean house?  Perhaps a good friend or family member can help you clean house.

Scenario #2: You need help.  Your're at the point that you can't clean your own house anymore and you're worried what your significant other will think of you for not being able to clean house.  Possible Solutions: I'm going to answer this one with my personal experience.  I had to realize that my house will not be the spotless house like it used to be before I got sick.  It took awhile for me to come to terms with this.  It also makes it hard to clean because my DH is also disabled.  I finally had to break down and get a home health aide, which is paid for by Medicaid and Medicare.  Not everyone is this lucky.  Some people are able to pay cleaning persons to come in and clean for them.  Again, most of us are not this lucky.  So what do you do to avoid the stress of a messy house?  Are there any jobs you can split with your SO?  Perhaps your SO can wash and dry the clothes while you fold it and put it in the drawers.  I have a hard time cooking and washing dishes, but some people have found that sitting on a stool has helped them to cook and wash dishes.  Do you have a dish washer?  If you don't is it affordable for you to get one?  I personally don't have one, but if you do then that may be a job you can do by yourself.  Vacuuming tends to be very painful for me, but I can pick up after myself and not leave the floor messy.  Can you bag up the trash but not be able to carry it outside?  Another case of teamwork is required here.  I can make the bed on good days, and my home health aide makes it the other days.  Splitting up housework is a great way to go.  Don't just split it with your SO, if you have older children that can help, get them started cleaning house. 

Scenario #3: What if you are a single person with no way to get to the grocery store, clean, or cook?  Possible Solutions:  This is a really hard one to answer.  I've been in this situation before and it is really hard to deal with.  Do you have a support system you can rely on?  It's great if you do, but sometimes you don't have one.  If you don't have a support system you need to find a way to get through extra painful times, or if you are always in severe pain.  How do you do that, though?  My first advice to single people is to get a pet that is low maintenance.  A beta fish, some cats, and numerous other animals make low maintenance pets that can lower your stress levels and increase "good" hormones in your brain.  Buying paper plates and bowls make it easier to on washing dishes.  Some people even buy plastic "silverware" to cut down on dishes even more.  A lot of the ideas in scenario #1 apply to this scenario as well, such as crock pot recipes, freezing chili or soup, ordering chicken at KFC, etc.  Be careful not to eat out too much, that can increase weight and cholesterol, among other things.  If you have a friend who can grocery shop for you or go along with you to pick up heavy items or items on the top or bottom shelves (requiring to reach or squat uncomfortably) then ask her/him to go with you.  Do you have relative that can help?  I suggest trying to do one cleaning job each day.  An example schedule could go like this: Monday-sweep and if you can mop, Tuesday-wash dishes, Wednesday-in too much pain to clean house, Thursday-wash dishes, Friday-do laundry, Saturday-wash dishes, Sunday-clean the bathroom.  Notice that on my example schedule on Wednesday you were in too much pain to work.  That is okay.  No one is judging you, and if they are, they shouldn't be.  Do what you can do, but don't do more than your body can handle.  Remember, sometimes you feel like you can do anything, but the next day your are in a flare for working way to hard for what your body can handle.  The key word you have to remember is moderation.

Scenario #4:  What if you want to apply for disability but have no idea where to start?  Possible Solutions: First I'd go to Social Security's Disability page if you live in the USA and Disability Living Allowance (DLA) in the UK.  I got disability (I live in the USA) on my first try, which is unusual.  Some people get lawyers the first time they apply, while I believe most people get lawyers once they've been denied.  A disability lawyer usually collects a portion of your backpay.  Backpay is the money you would have received if you would have had disability once you applied.  For instance, say I applied in January 2010, and after being denied I got a lawyer.  In December 2010 I finally got my disability.  For this example say I get $500 a month.  So I'd take ($500 x 12) = $6,000 backpay.  The lawyer gets a portion of that packpay.  Then you would get your first disability payment in the beginning of January 2011 in the amount of $500.  I was approved the first time because I wen through a free agency called Tri-County Center.  Perhaps there is a similar agency where you live.

Scenario #5:  What if your main cause of stress is pain?  Possible Solutions: Pain, pain, pain!  Pain is a leading cause of stress for us fibromites.  How do you decrease the stress caused by pain, though?  There are a few different ways.  I enjoy yoga and want to try Tai Chi.  I have four ice packs I keep in the freezer, two big ones, and two little ones.  I sleep with at least four pillows to try to find that elusive comfortable spot.  I wrap myself in my electric blanket during my flares, and I get plenty of sleep, even if it is daytime sleep.  I, like a lot of fibromites, often have trouble falling asleep without medication.  I have found that my muscle relaxer and Benedryl helps me to fall asleep.  Get involved in any hobbies you like or find new hobbies.  My hobbies are: writing, reading, pen palling, crafts, collecting books, collecting Precious Moments, blogging, Twitter, and Facebook, in no particular order.  Listening to music I love also calms me, even if it is Lady Gaga.  I don't think it matters so much on what the music is, unless you are trying to sleep with it, as much as it matters that you really like it.  Heating pads are nice.  Try having a time a day where you don't talk about your health, to remind yourself that you are more than just someone with an illness.  Get educated, so you know what is happening to your body, how to make yourself feel better, and it helps you be aware if your symptoms are receding or accelerating.  I cannot stress enough to get educated on any illness you may have.  It will only give you power over it, rather than the illness having power over you.  Have you tried medication?  There are three medications that have been FDA approved for fibromyalgia and many more that are prescribed "off label."  Off label simply means that the FDA hasn't approved that medication for fibromyalgia.  This doesn't mean it is dangerous, but it doesn't mean it isn't dangerous, either.  I look up all my new medications on , including the ones that are CAM (complementary and alternative medicine).

I hope that this helps!