The Fibro Diaries

Energy - Can I have it?

2008-07-06T19:04:00.000-07:00

Energy - or the lack thereof - is one of the most difficult things for fibro sufferers to deal with on a daily basis. Most normal people only notice the lack of energy after they've spent a day working or completed a sporting event or chased after 4 kids, cleaned the house, and prepared a 5-course meal. They may fall into bed 'worn out' after the day's events. People with Fibro feel this way when we wake up.

"Energy cycle deficiency. Studies of oxygen consumption and exertion show that fibromyalgia patients suffer from an inability to generate adequate energy at the cellular level. This may be influenced by a decreased availability of specific hormones that influence the energy cycle." ~Edward Lichton M.D.,PC (http://www.usdoctor.com/fibro.htm)

Patients with Fibro wake up with 1/3 of the energy that normals have. This energy is depleted through just a few tasks during the day, so that we're worn out by noon. Some of us need frequent naps during the day, are lethargic, and unable to do much more than get one household chore finished. By the end of the day, we've exhausted all of our energy and more, only we're unable to generate back that energy during the night, because REM or deep sleep cycles elude us. The next day we wake up more tired that before - and continue the cycle for days on end.

Many people - husbands, wives, children, doctors, bosses - wonder why we're always so tired. I have heard things like "Are you taking your vitamins?" "Are you eating right?" "Aren't you sleeping at night?" The answers vary amongst us. Yes, we're eating right, no we don't sleep, some of us take vitamins and some don't. The issue isn't the external things that influence our energy levels. It is our body's inability to produce the normal amount of energy that regular people require for their day. This is just one of the effects of Fibro.

Imagine waking up, feeding your 4 kids and getting them off to school, spending the morning cleaning the house, folding laundry, then going to the grocery store, the shoe store, the clothing store, taking the kids to soccer practice and gymnastics, then coming home to prepare a meal for 20 guests, cleaning up after the meal, adding another load of laundry, and getting the kids to bed. This is what many Fibro sufferers feel like ALL THE TIME.

For me, just going grocery shopping is exhausting. 1 hour of walking around leaves me shaking and sweating. Doing the dishes - the same. I can't do dishes AND vacuum at the same time in one day and trying to do dishes and then cook dinner - takes all the energy I've had for the day. People ask me why I can't go to concerts or to the mall or why it takes me an entire day just for a doctor's appointment. Well...now you know.

More...next time.

~Debra

What Exactly is Fibromyaglia?

2008-06-23T20:50:00.000-07:00

Fibromyalgia Syndrome (FMS) is a difficult illness to understand. It is chronic and widespread and affects more women than men. The causes of Fibro aren't really known for sure - but some thoughts are that it can be hereditary or can be caused by trauma or injury. Fibro is an illness that impacts both the brain and the nervous system and can virtually cause symptoms over the entire body. Many people think that because they cannot 'see' anything wrong - and the person has a host of widespread symptoms, that the illness is psychological. But nothing is further from the truth. Fibro is real - I can attest to it - as can many others with this illness.

Adrienne Dellwo, in an article on About.com, has explained it like this, "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 very real pain.

Other substances in the patient's brain amplify signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks." (http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm)

She also has a great list of Fibro symptoms. Most of us who suffer from this chronic illness have many, if not all, of these symptoms at one time or another. It's not to say we have all the symptoms all of the time - but enough..most of the time that we generally feel rotten and day to day life can be very difficult. Here is a generalized list (http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm) one of the best that I've found:

General Fibromyalgia Symptoms

Delayed reactions to physical exertion or stressful events
Other family members with fibromyalgia (genetic predisposition)
Sweats
Unexplained weight gain or loss
Cravings for carbohydrate and chocolate, and sweets
Headaches & migraines

Muscle & Tissue-Related Fibromyalgia Symptoms

Morning stiffness
Muscle twitches
Diffuse swelling
Fibrocystic (lumpy, tender) breasts (as an overlapping condition)

Sinus & Allergy-Related Fibromyalgia Symptoms

Allergies
Post nasal drip
Runny nose
Mold & yeast sensitivity
Shortness of breath
Earaches & itchy ears
Ringing ears (Tinitis)
Thick secretions

Sleep-Related Fibromyalgia Symptoms

Light and/or broken sleep pattern with unrefreshing sleep (waking up tired)
Fatigue
Sleep starts (falling sensations)
Twitchy muscles at night/Restless Leg Syndrome (an overlapping condition)
Teeth grinding (TMJ)

Reproductive Fibromyalgia Symptoms

Menstrual problems
PMS - from mild to severe (as an overlapping condition)
Loss of libido/loss of interest in sex
Impotence

Abdominal & Excretory Fibromyalgia Symptoms

Bloating & nausea
Abdominal cramps
Pelvic pain
IBS - Irritable Bowel Syndrome (diarrhea or constipation, irregularity - as an overlapping condition)
Urinary frequency

Cognitive ( known as Fibrofog) Fibromyalgia Symptoms

Difficulty speaking known words
Directional disorientation
Loss of ability to distinguish some shades of colors
Short-term memory impairment
Confusion
Trouble concentrating
Staring into space before brain "kicks in"
Inability to recognize familiar surroundings

Sensory Fibromyalgia Symptoms

Sensitivity to odors
Sensitivity to pressure changes, temperature & humidity
Sensitivity to light and noise
Night driving difficulty
Sensory overload

Emotional Fibromyalgia Symptoms

Panic attacks
Depression -from mild to severe (as an overlapping condition)
Tendency to cry easily
Free-floating anxiety (not associated with situation or object)
Mood swings
Unaccountable irritability

Heart-Related Fibromyalgia Symptoms

Mitral Valve Prolapse (as an overlapping condition)
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack

Skin & Nail-Related Fibromyalgia Signs & Symptoms

Pronounced nail ridges
Nails that curve under
Mottled skin
Bruise or scar easily
Tissue overgrowth (non-cancerous tumors, ingrown hairs, heavy and splitting cuticles, adhesions)

As I said, this is by no means an exhaustive list. But it is daunting - is it any wonder that many of us are depressed most of the time or have a hard time getting out of bed in the morning?

Next time - Energy Levels: Why Fibro Sufferers Don't Have Any

~Debra

Introduction

2008-06-22T08:02:00.000-07:00

Hello and Welcome to The Fibro Diaries! My name is Debra. I have Fibromyalgia (sounds like the beginning of an AA meeting!).

I was first diagnosed with FMS in Feb. 2006, 9 months after I had back surgery for a pinched sciatic nerve in my right leg. Fibro often appears strongest after a traumatic event, such as surgeries, car accidents, emotional trauma. I suspect that I really had been experiencing symptoms of it after my car accident in 1998, but just never knew what it was. I had been sick for a long time - bosses complained, family complained...I complained. I always had 'something' that kept me sick and tired and unable to be the those things that others needed me to be.

I have been a single mom since 1998, having been married twice, with 3 fantastic boys. My oldest is 26, and currently living at home; the middle child - our responsible one - is serving in the Army Reserves in Georgia; and the youngest is just starting high school. We also have one cat - or rather a cat that thinks she's the baby, Missy. She is my baby - my confidant, my cuddler. We live in a tiny 2-bedroom apartment in a small town that seems to be growing every time I turn around. We may not have much but we're happy and close.

I have a fantastic job and a wonderful boss who makes is possible for me to continue to be independent - something we FMS sufferers have a difficult time with. I can honestly say that I LOVE my job and that is something not everyone has in life. I believe in the passion and purpose of my job with Design-her Gals, to raise funds and awareness for stage IV breast cancer. My auntie died from Breast cancer - and many members of my family, including my father - currently suffer from one form of cancer or another. I have never been much of a "cause" supporter (other than my own), but this is one I firmly believe in - as it is close to my heart.

The year after being diagnosed with FMS was one of the hardest I've ever had to deal with on a personal level. Learning to accept that you have a chronic illness, amongst other medical issues, is challenging at best. It changes your life, the way you look at the world and yourself. I have come to accept it now but I am still learning to live with it - its a daily struggle, one I share with many other women and men out there.

The purpose of this diary is two-fold: 1) to educate the "normals" about what it is like to live with this illness. So many people believe that we are lying or faking - we don't have any obvious outward signs of being disabled or sick. I hope that through a peek into what I suffer - what many of us suffer each day - others who do not have this illness will be educated in empathy for this illness you cannot 'see'. 2) to empower those of us who have FMS to support one another, to share our stories, our little 'miracles', our suggestions and information. There are so many women out there who suffer in darkness and feel that something is wrong and no one knows how they feel - only that their lives are miserable and they feel miserable. I hope to be able to reach these women - to help them see that there ARE others who suffer with them, who DO feel as they do, and to know they aren't alone..ever!

Comments - I welcome them. However, I will screen them first. Through experience, there are many who only wish to post comments in order to harm, hurt, or make others feel rotten. We suffer enough and if that is your intention, I will not post your comments. But if you disagree with what I'm saying, the information I present, and can do so in a constructive way that isn't set out to 'attack' anyone, then these comments will I gladly post, as well as all the positive and caring comments that come through (if any!).

Please know that I do not post anything here to discriminate, slander, harm or hurt, or otherwise mislead anyone. These are my personal observations, choices, feelings, and the information that I've gathered in my research into this illness. I make no claims by any means that this is the ONLY viewpoint out there or the only information available, and anything I post here should NEVER be taken in lieu of a doctor or therapist's advice.

Once again, I welcome you to The Fibro Diaries and truly hope you will find knowledge, comfort, and support in these pages.

~Debra