What IS Fibromyalgia?

Hmmmm....that's a good question!  Depending on who you ask, you get different answers.  Some doctors don't believe the syndrome actually exists, so they don't have much to say about it.  And then the doctors who DO believe in it, so poorly understand how it's treated, they make up things about it so they don't look too off mark. I've actually had doctors do that to me!  And then, most importantly, there is YOU.  I'm sure you have many ways to describe how you feel, how you can't sleep very well, how you ache from head to toe like you are coming down with the "flu" 24/7, and the list just goes on and on.  I've created this page as a reference guide to all who visit my blog with the question first of "FibromyWHAT?" (which was my first uttering after being diagnosed way back in December of 1996.) and what are the symptoms, how's it treated, and how can you help a loved one who has the condition.  I've used a lot of information from WebMD (you can find the link in the bottom section under the title "Cool Websites" of my blog and it will take you right to the Fibromyalgia Center.) which in my opinion, is the BEST medical source on the internet.
OK, let's dig right in.  Fibromyalgia, if you break the word down, simply means "fibro" for fibrous and "myalgia" for pain in the muscles.  It can strike at any time, any age, but USUALLY hits women in their 20's or 30's. It affects 1 in 50 Americans, with women being the most it hits.  Also, if you have a family member with fibro, your chances of getting it is higher. And if THAT weren't enough, it often accompanies temporomandibular disease, rheumatoid arthritis, irritable bowel syndrome, headache, backache and interstitual cystitis. Nobody knows why this happens.  One theory is that you have a physically traumatic or stressful event.  Sometimes it follows an illness or immune disorder.  Such as, rheumatoid arthritis or Lupus.  All I know, is once you get it, you can't give it back!  Darn!  I'd do so in a heartbeat!  I believe my fibro came on in nursing school in 1993.  I was under a tremendous amount of stress and just wasn't feeling well that whole last year.  I could walk with my dad these long walks the first year of nursing school, then when the heat was on in the second year, I couldn't walk a block without my calf muscles clenching up so hard it took my breath away.  I felt like I needed a wheel chair to finish the walk! 
     I also felt exhausted.  I could barely get through my nursing classes then I'd have to come home and crash for the rest of the night.  No matter how much I slept, it just wasn't enough.  I'd wake up feeling just as tired as when I went to bed.

     I had such bone and muscle aches everywhere, especially in my lumbar back region and bilateral thighs that just never went away.  Tylenol and aspirin were my best friends back then.  Here I go from never taking anything but a vitamin to anything that would just make the pain go away.  As every "fibromite" knows, you get desperate and take whatever you think will help to take the pain away.

To diagnose fibromyalgia, the doctor uses these two criteria:

1. CHRONIC WIDESPREAD PAIN that affects both the right and left side
  of the body above and below the waist.

2. PAIN IN AT LEAST 11 OF THE 18 TENDER POINTS-9 on each side of the
   body when light pressure is applied.
 There are so many ways to treat fibromyalgia today than when I was diagnosed.  Basically, I went in to the doctor, he jabbed me in various areas that were so very sore (I wanted to poke his eye out!!!) and when I reacted in pain, he said, "yep, you have fibromyalgia" and gave me a pamphlet and a prescription for Elavil and walked out the door.  No question session, no hand-holding, he didn't even tell me WHAT IT WAS, for Heaven's sake!!  That was the first and last time I saw THAT doctor again!  So, I did some research on my own before finding another doctor. I wanted to go in knowledgeable about what I had and have a few ideas about treating it.

What I found out from my research was that fibromyalgia is treated by a combination of quality sleep, pain control, diet, exercise and medications.

Let's start with quality sleep.  What is that, anyway?!  The "normal" sleep cycle is 3 stages. The "normal" person completes all 3 stages within 90 minutes of falling asleep.  With those with fibro, if we finally DO fall asleep, we skip some stages and wake up feeling like complete crap!  Sleep is so very important to the body because that is when it does its healing of damaged muscle tissues, among a many other trillion things!  But with fibro, we need lots of help getting that quality sleep.

This is where the prescriptions for anti-depressants come in to play.  When I was first diagnosed, along with the pamphlet the doctor handed me, he also gave me my very first prescription of Elavil.  It did work for me for about 3 years, but one of the side effects was daytime drowsiness.  And very dry mouth.  The day time drowsiness got so bad, I was sleeping ALL the time and I went to a rheumatologist who treated fibro patients and that's when she switched me to Nortrptyline, which is a "cousin" to Elavil.  That worked a little better and I was on that for about a year then it quit working.  Next was Effexor.  I took one dose of that and it swelled up my whole mouth and made my mouth numb.  That drug ended up on my "allergy" list!  So I tried Zoloft and that was my miracle for a good number of years.  Then, of course, it stopped working.  My husband and I moved to Phoenix and I found a rheumatologist here who is wonderful.  He listens to what I say and believes me!  Yay!  He wanted me to start a new drug called Savella (you can find the link for more info near the bottom of the page with the other links).  He was so persistent with it,  I thought he owned stock in it!  It took about 9 weeks to finally start working.  Boy, does it work!  I get that quality sleep we need so much.  Unfortunately, the rest of my body is falling apart from arthritis, diabetes, obesity (I'm having that weight loss surgery hopefully in January 2011), hypertension, to name a few.  I can only lay on my back and at that, I get about 5 hours of sleep a night.  You just can't win!!!  When I lose a lot of weight, and can sleep on my side or stomach, boy...I'll be in fine shape then!!  :0)
We'll combine pain control and medications together, since they go hand in hand.  A lot of doctors are hesitant to prescribe narcotics for fibro pain.  They would rather you try other things first....such as that new medicine targeted for fibro pain called "Lyrica."  Now I've never tried Lyrica, but I've heard a lot of negative side effects and reactions from it.  There is also "Cymbalta", which I've never tried, but have heard mixed results about.  Those two, along with "Savella" are marketed and FDA approved for fibromyalgia.  One may work better than the other for you.  You just have to be persistent when talking with your doctor about what works and what doesn't.  If you really are having a lot of pain, some doctors will be compassionate and prescribe low dose Vicodin or Tramadol (Ultram) to help with the pain.  I go to a compassionate doctor believes my report of pain (as I also have three bulging lumbar disks in my back which are compressing my nerve roots) and she tries to make me as comfortable as possible.  This is NOT complete list of medications used for fibromyalgia.  Follow your doctor's orders to the tee! 

There's a lot of talk about this "LDN."  Which stands for "low dose naltrexone" and have been a real miracle to the people I've talked with who have taken it.  I'm sorry, I don't really know much about it than what I've just written.  If you take it, please let me know your thoughts about it and I'll include them on this page for others that are considering taking LDN.
Let's delve into diet and exercise.  ANY disease responds better in people who are in good shape than those who are chronically ill and then have fibro strike them when they are down with something else.  So the more healthy eating you can do, the better.  I've given up a lot of my sweets, fried foods, potato chips and calorie ridden sodas.  I've lost about 90 pounds by doing that, but now I'm stuck. I'm still on fat free, sugar free stuff but, because I can't move around too much, I'm in a diet "plateau." I'd been eating and drinking those "bad foods" for as long as I can remember and finally, when I got to the weight I am now, I said this is enough! I still have about 150 pounds to lose.  I kid you not!  So now, because I've gotten myself in such a mess, I'm proceeding ahead with bariatric surgery to help me lose weight and keep it off.

Some people swear by this "Gluten Free" diet.  I don't really understand it, as I haven't researched it yet, so if you are on this diet and it's working for you, please write me and let me know so I can add it to this page.  I want to make this page a total educational page of what works for people with fibromyalgia.

Swimming is an excellent exercise and it gets all that pressure off your joints and muscles.  Thanks to my friend Kate on Facebook, she sent me a BEAUTIFUL swimsuit (and a whole box full of neat clothes!) and I have another one coming from my wonderful friend Sheila on Facebook.  She will be sending me a swimming suit, too.  Wow!  I just am so happy to have such nice friends that help out when in need.  We are living on just my husband's disability check (I am waiting for a hearing on MY disability case) and my medical care can get quite expensive.  Luckly, I have Medicaid to help or I'd be sunk!!  OK....sorry to get side tracked!  Now I can go swimming and exercise!!  I just have to find a pool now....LOL.  Walking is also another good low-impact exercise.  Forget jogging, in my humble opinion.  It's bad on your joints and for people with fibro (at least THIS person with fibro-it hurts too much!!)  PLEASE REMEMBER: before starting ANY diet/exercise program, CHECK WITH YOUR DOCTOR FIRST.

What also helps me, especially when I was in physical therapy, is relaxation and deep breathing.  Deep breathing is where you totally relax your body and mind and a deep breath in through your nose, hold it for a few seconds, then slowly let it out through your mouth .  This really does help in relaxing your muscles and making them more pliable when you do your routine.  They also used this big heating pad on me for 20 minutes before the routine. Then after that, I got a big ice pad to lay on to numb the pain the exercise has caused.  That too was for 20 minutes.  Then my session was over.
This is where I make my sales pitch about the absolute BEST store for fibromyalgia needs.
It's called Active Forever and is online at www.activeforever.com.  I've bought many things from them.  My pillow wedge that elevates my feet while in bed, my neck pillow (which I use all night) and my Polar Frost pain relieving gel.  I've used many gels and creams out there on the market and I've come to the conclusion that Polar Frost is the best.  And it lasts longer than the other gels, such as Freeze-it or Bio-Freeze.  But this is just my opinion. You use what works best for YOU!

How do you talk to your doctor about all this?  The MAIN goal, numero uno is finding a doctor that believes what you are saying is REAL.  You are NOT a drug addict or scammer. You just want relieve from pain and a good night's sleep.  It all boils down to those two things!  You want a doctor that takes the time you need to achieve your health goals.  A doctor that flashes in, constantly looking at his watch, nor listens to you is NOT what you need.  Fibro is hard enough to treat on its own, you don't need some bozo that doesn't give you the time of day in your care team!  A lot of doctors now are referring fibro patients out to these pain management clinics.  I've have mixed reviews from them.  Some work like a charm, others are a waste of time.  I went to one in February of this year, had two shots in my lower back and my feet have been so swollen, I've had to take Lasix to try and control the swelling.  I can't prove it was the pain clinic, but it's awfully fishy it started a day AFTER the shots.  If you go to a pain clinic and love it, great!  I'm happy you found one of the good ones.  I think they are so on guard because addicts use pain clinics as a way to score their daily fix.  That's why they have strict rules.

I hope this page has been able to answer some of your questions.  To the family members out there with loved ones with fibro, be kind, patient and gentle with them.  If they have days where they don't want to be touched, it has nothing to do with you at all.  It's just their skin and tender points are so sensitive, it hurts.  If they are crabby and exhausted, please remember that people with fibro, even with medications, sometimes don't get their fair amount of sleep.  Especially those with young children.  I don't know how they do it, actually.  My husband and I have NO kids and I still feel exhausted from doing nothing!!  My husband has been very kind to me, though, and helps me get in the car, takes my walker in/out of the trunk, helps me up curbs, fixes me dinner when I just don't feel well.  I couldn't ask for a better support system.  I hope and pray you all have one, too.
If you have any further questions or information to add to this page, please don't hesitate to contact me at missyschranzrn@gmail.com.  I'd love to hear your thoughts and opinions.

 Please note that the information above is meant to act ONLY as a guide and NOT a substitute for individualized medical care.  Please follow whatever instructions your doctor has given you.  If you have questions, ASK!  That is what they are there for!!  :0)

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