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.