Friday, December 30, 2011

My Name is Fibromyalgia

Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now attached to you for life. Others around you can't see me or hear me, but your body FEELS me. I can attack you anywhere, anyhow, anytime I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over (like having flu!).

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. You wake up each morning, feeling as if you've been run over by a truck. I can make you tremble internally, or make you feel cold or hot, when everyone else feels normal.

My favorite thing of all, is that I just love letting you do things (because often, you are capable) Such as, go to the gym, clean the windows, write a long report, pick something heavy up.....then I love to reward you.......with lots of pain and stiffness, AND I like to make sure it is widespread and varied.....bone, muscles, ligaments, joints, nerves. Just for good measure, I like to throw in some tiredness and/or exhaustion, let's not forget the RSI's (repetitive strain injuries) or RLS (restless leg syndrome). I have to live up to my name!!

You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from such as trauma e.g. that car accident. Maybe it was the years of abuse, or am I just a mystery? Well, anyway, I'm here to stay!
I hear you're going to see a doctor who can get rid of me. (I'm rolling on the floor, laughing. Just try!) You will have to go to many, many doctors until you find one who can help you effectively, but I can guarantee that they won't make me go away. You will be put on pain pills, sleeping pills, energy pills, none of them giving much relief, and most of them giving you lots of unpleasant side effects. (Oh I love it!)

So now you have to suffer with side effects AND Fibromyalgia. AND it doesn't stop there, I can't let you have too much of an easy ride. I give you plenty of associated symptoms as well....problems with your bladder, bowel, in fact most of your internal organs. Plus sensitivity to sound, light, temperature etc., as well as MANY other health problems, that I can think of giving you!
In desperation, you try a TENs unit. Spend lots of money on massages, chiropractic sessions, and other alternative treatments and medicines. The doctor says, if you just sleep and exercise properly I will go away (I'm now crying with laughter). You’re told to think positively, poked, prodded, and experimented with. But MOST OF ALL, you're not taken as seriously as you feel, when you cry to the doctor, about how debilitating life is every day (Oh dear, someone get me a tissue!!)

Then you get told that the cause is depression. When in actual fact, it is me, who has caused you to feel depressed, have panic/anxiety attacks (I have so much fun!)If you have something planned, you're looking forward to a great day or an event. I can take that away too. I hate it though, when you decide to be strong willed and 'work' through the pain, still sticking to your plans. You spoil my pleasure...don't worry, I'll get you back!

Your family, friends and co-workers will all listen to you, until they just get bored or tired, of hearing about how I make you feel. And that I'm a debilitating disease. Some of them will say things like "You look okay" or "Oh, you're just having a bad day" or "Remember, you can't do the things you used to do 20 YEARS ago" (not hearing that you said 20 DAYS ago!!)

Some will just start talking behind your back or avoid you. While you slowly feel that you are losing your dignity, trying to make them understand. Especially when you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next, or struggle to remember anything you need to remember!

Some get upset, when you snub their social events. This could be for many reasons....bad health, pain, tiredness, loss of confidence, or simply that you can't find the energy. Getting ready to go out is too much like hard work, even though part of you would love to go!

In closing, (I was hoping that I kept this part a secret, but I guess you already found out, because you joined a support group)......the ONLY place you will get any REAL understanding, in dealing with me, is with other sufferers of Fibromyalgia !
Here are some articles of help to the fibro patient:
Microwave Heat Packs
How To Make A Microwavable Heat Pack 
Some other ways to make microwavable heat packs without rice 
Places on FaceBook that I belong to and enjoy!  This list is incomplete and I will be adding more links!  Feel free to write to me at and suggest your link and I will review your site.  Thanks!
I'm a strong supporter of Organic Living:   live green, eat organic and recommend that others do the same. I am quite committed to the idea that when we, as consumers, demand the types of medical care, personal care products, foods and regard for the environment from those that supply these things all will change and we will see a resurgence health and happiness. The care of our natural environment demands more attention as the forces of business and ill intentioned science are combining to poision the flora and fauna we all depend on. It is such a long talk and the dialog of groups like, and can make it possible to control more of the outcomes but so many more people need to step up to the plate and demand good, clean food and air.
 *The author of the article .... without all the links...  is Terri Been of Colorado


Jan Messali said...

This is an EXCELLENT post. I have family members with fibromyalgia and will definitely share this with them. Thank you.

Retail Therapy Lounge said...

Great Post - I have heard of this and knew sort of what it was - but now I know! Thanks!

Shawna said...

My Mom has restless leg syndrome and a friend has Fibromyalgia it's awful. Thanks for the very informative post!

Unknown said...

Really great explanation!

LOVE MELISSA:) said...

THis is a really great post. My friend suffers from this!

Linda Meyers-Gabbard said...

I was diagnosed almost 10 years ago but has been suffering every since I can remember. Symptoms started when I was 17 I'm now 51. I knew long before I found a doctor that would put the correct lable on it.
I was able to work up until 2004 it just got unbearable. I miss the life I had. The freedom. The money. My income was cut in half when I went on SSD. I would not wish this upon anyone.

I also have an aunt that suffers.

May I share this in my FB page??

Asha Jamwal said...

I am not aware about Fibromyalgia.
Thanks for sharing.
Grocery Coupon Mama

Nutrition Articles said...

This post is really helpful and i will share this to my friends !!

Unknown said...

Amazing post! You put what I've been feeling into words and I so appreciate it!

Diane said...

Great post carolyn! There needs to be more awareness because with more awareness comes more research! Someday they will be able to pinpoint a cause or a cure - maybe both!

tracerscouponaffair said...

This is an AMAZING post girlie! As you know I have fibro too and your explained it perfectly!

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