For Those Wondering About Fibro

When people ask me to define what Fibromyalgia is I sometimes stumble over just what to say. Honestly saying I am exhausted all day, every single day and saying it is an issue with my central nervous system and immune system and that I am in pain 24;7 does not do it justice. There is one article (below) that simplifies it, but there are so many more articles to read. The thing is, read them and test them to your own life. Not everyone of us who struggle with Fibro is going to have it the same exact way, though we do share the common pool of symptoms that occur on a daily basis.

Bottom line, be your own advocate. It is disheartening, I know. I think most of us have been told we are crazy, "it's all in your head," or "push through." We've had doctors who brush us off because they cannot figure out what is wrong with us, and we've had people we thought would be in our lives forever walk away because the truth is Fibromayalgia IS hard and it is a lot of work for both the one who has it and those closest to them.

A little over 2 years ago is when occasional symptoms (migraines, vertigo, chronic fatigue, chest pains, and constantly feeling unwell) gave way to that downfall of which I have yet to recover. 2010 was spent in ER after ER, doctor after doctor, symptom after symptom, viruses, infections, and then the fatigue became debilitating transforming me ever so slowly into a homebody and a mood ball. 2011 was me barely hanging on by a thread, lots of drama involving people dear to me, loss, a huge move, leaving behind a piece of my heart in California, appointments every single week, pain, depression, anxiety, finally finding a doctor who took me seriously at a Fibromyalgia clinic, and starting treatment.

It has been a very rocky road.

I have learned along the way from so many wonderful people who have shared their stories and hearts with me. Here are some things that seemed SO very impossible when stumbling around in the dark, without an official diagnosis and without a grip on what reality actually was. At my darkest of moments I honestly did wonder if I was crazy. It seemed impossible to go from healthy to whatever I was just like that.

1. Believe in yourself. You are NOT crazy. You are sick. It is real and it has changed your life.

2. Allow yourself to go through the stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance. I am still in process and they jump around sometimes. They don't always happen in order. Right now I am in acceptance but it was not an easy road to get here. It's brand new- only a couple of months old and very fragile. I flit easily back into anger or depression and even denial and bargaining when there is even the slightest reprieve in my body, but the victory of even seeing the possibility of life full of sunshine again is proof positive that the world DOES start to bring beams of hope again.

3. Journal, blog, talk about what is going on. A lot of times people ask and don't really want the nitty gritty deatils about Fibromyalgia. Tell them anyway. Our disease is misunderstood and looked down on. It is our responsibility to advocate for ourselves. You are not alone. There are so many out there suffering from this and we need to be heard. It's also a great encouragement to me and others out there to hear about YOUR story. One of my best friends is someone who I met via Blogger. Now we interact daily and her fight has become mine and vice versa. I honestly don't think I would have made it without her prayers and support.

4. Pray and seek God in your circumstances. If you don't believe in God, meditate. Soak in silence and let yourself feel and process what is happening to you.

5. Find a support group. I tried to go to one in person but it was too difficult so I started searching online for blogs and information and got connected to The Fibromyalgia Funhouse on Facebook and met some amazing women and men. Now there is a whole support system. On my worst days I can always go online and connect with people who know exactly what I am going through and who never judge me or make me feel bad about it all. These friendships have become essential and very deep.
This helps especially when "normals" start to drop like flies around you or when friends and family refuse to acknowledge your illness.
Here is a great place to get connected and help raise awareness:
http://www.fibromyalgiacrusade.com/

http://chroniclesoffibro.blogspot.com/

Other blogs the encourage me:
http://alexandria-jesus-fybro.blogspot.com/


http://kissesfromkatie.blogspot.com/

http://myfibrofight.blogspot.com/

http://hollipocket.blogspot.com/

6.Let yourself be lifted up. I struggle with this. It's hard not to feel like a monster when snappish, feeling sick all of the time, not being able to entertain friends well anymore, having to say no, and generally being like a pill to friends and family.... but you are not broken, you are not a beast. You ARE sick. Think about it.... when "normals" are sick with the flu are they walking around whistling or are they in bed and a bit grumpy? Be nice to yourself. Easier said then done. I know.

7. Find out what foods affect your system negatively and try to avoid them. For me it is chocolate, sugar, greasy foods, marinara sauce, etc. I have yet to master this. ;) Incorporate leafy greens and tons of water to clear out your toxins (which is something us with Fibro have a hard time with.

8. Find a doctor who will take you seriously. It may take quite awhile but there is one out there. Get specific blood tests such as Natural Killers Cells function (which will tell you what percent your immune system is working), thyroid disorders, diabetes, parasites, bacterial infections, viral infections (HHV6, HHV7, EBV, Lyme disease, autoimmune diseases,etc). Candida is a HUGE deal and can be a huge contributer and add up to 15lbs to your gut. If you are experiencing chronic yeast infections or have it in your mouth or IBS is out of control you may need prescription medication to kill the candida off. Get the right medications for YOU. Lyrica works for some and doesn't for others and a lot of supplements will help rebuild your immune system (especially magnesium malate, vitamin c, and vitamin d). One thing to remember and also share with your people is that none of our diseases are individual. Our immune systems are compromised which allows for us to catch whatever is swirling around in the air. No one knows what comes first in our bodies- the viral infections/other ailments or the Fibromyalgia. Regardless, we are working with an empty tank of gas almost every single day physically and EVERY SINGLE issue (a cold, the flu, arthritis, the cold, mold, seizures, IBS, etc) all works together to break us down. So saying we have Fibromyalgia hardly begins to cover the extent of what our illness means for daily living.

9. Rest when you can. Exercise when you can. It's hard. We feel like going, going, going. That's usually why we ended up here. ;) We're the Doers and it's hard to put that down when we get sick. We're so used to taking care of everyone else. So learn your pace and don't let anyone else make you feel bad for what YOU require to feel better. I struggle with this a lot. On days that I feel well I take off and do, do, do! Like I don't have Fibromyalgia, but I do. So with 2012 coming my vow to myself is to put my feet up more, take naps, and say no whenever I don't feel that it would be beneficial for my body. It's not your fault that you are sick. I'll keep saying that.

10. Let go of toxic relationships. I am still working on this. We can't handle stress like we used to. People don't like that we've changed. They make us feel bad. We make ourselves feel bad. We've got to let these emotional vampires go. When you figure out how to do this, please do let me know.

11. Learn to say NO! This is hard for me. I have always been a yes person. A people pleaser. A social butterfly. Not good! Those are not things to boast about. Saying no does not make you weak. In fact it takes more strength to implement boundaries and verbalize them. If you cannot make it to church or to a party, oh well. Yes, it's really that cut-throat. This is a battle. This is your body. If you don't take care of it, it will stay broken down. If there is an event you must got to, plan to rest for a few days afterwards to recover.

12. Earplugs are your best friend. Carry them in your purse, pockets, car, or diaper bag. If you go to the movies the earplugs will allow for a more pleasurable experience. Right now I am wearing one while watching a movie with family.

There is a lot more I could say and a lot I have left to learn. The list above is what has been beneficial for me and it took 2 years to get to a place where I even feel like I could compile a list at all. My life is not easy and I will never pretend that we can "just" do these things to magically feel better. There is no magic cure. No potion, no bracelet, no book. It's hard work and many a person will tell you that if you "only do this and that you will be better!"

Tell them to walk a mile in your Fibromyalgia shoes and then say that again. ;)


Here is that article:

"Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.

If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.

Digging through that scientific research doesn't help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren't exactly easy to grasp.

The goal of this article is to help you understand and relate to what's going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you'll find relevant medical terms with links to definitions. They'll be helpful if you want to go beyond a basic understanding, but you don't need to understand the terms to get through this article.

Understanding the Pain of Fibromyalgia

Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into actual pain.

Other substances in the patient's brain amplify a host of other signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks.

Related terms

Substance P
Serotonin
Glutamate
Understanding the Ups & Downs of Fibromyalgia

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.

Related term:

Flare-up
Understanding Stress & Fibromyalgia

Some people think fibromyalgia patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.

People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.

Related terms

Norephinephrine (noradrenaline)
Cortisol
HPA Axis
Understanding the Fatigue of Fibromyalgia

Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.

With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:

Insomnia (difficulty getting to sleep or staying asleep)
Inability to reach or stay in a deep sleep
Sleep apnea (breathing disturbances that can wake the person repeatedly)
Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.

Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

It's NOT psychological "burn out" or depression.
It's NOT laziness.
It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier."

Article
from:http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm


Happy New Year lovelies!