To me, the fallen petals represent what has happened to our lives. And the ones that are face down are things that we can't do at all anymore. And the ones that are still face up are the ones we can still do... but at a price.. not like we used to be able to.
I took this picture after a rain storm and Fibro is the storm that has come thru all of our lives.

Saturday, May 29, 2010

Pain Research

Latest News
Researchers Document Severity of Fibromyalgia
Posted: May 26, 2010

You look just fine and nothing is broken, so why do you say you have so much pain, and why don't you have the energy to just get up and go? These are the frustrating questions that people with fibromyalgia face every day. A research study headed up by Fausto Salaffi, M.D., in Milan, Italy, documents the serious impact fibromyalgia has on a person's health-related quality of life.*

"Patients with fibromyalgia report disabilities in daily living activities that are as severe as those reported by patients with rheumatoid arthritis, and more severe than those reported by patients with osteoarthritis or other painful conditions," states Salaffi and co-workers. But how do fibromyalgia patients really compare to rheumatoid arthritis patients when using standardized questionnaires to evaluate both groups? This was the question that Salaffi's study sought to answer.

Salaffi assessed a large group of subjects, which added strength to his study. He enrolled 380 fibromyalgia patients, 693 people with rheumatoid arthritis, and 1,579 healthy control subjects. All participants completed a validated instrument (Short Form 36-item Healthy Survey Questionnaire, SF-36) that measures the following eight components of health-related quality of life:

(1) physical functioning,
(2) role function - physical aspect,
(3) bodily pain,
(4) general health perception,
(5) mental health,
(6) role function - emotional aspect,
(7) social functioning, and
(8) vitality.

For the most part, the scores for each of the eight components of the SF-36 were the same for both the fibromyalgia and rheumatoid arthritis groups. However, fibromyalgia patients scores substantially worse on vitality. Feeling so devoid of any energy, it is no surprise that fibromyalgia patients also scored worse on the mental health component of the SF-36.

"Fibromyalgia patients consider widespread pain, fatigue, and unrefreshing sleep to be the factors that most significantly limit work performance, and our findings are consistent with those of previously published clinical studies," writes Salaffi and co-workers. "Pain is one of the most frequently reported, bothersome and disabling symptoms" he says, adding that the "pain may be more severe than in rheumatoid arthritis."

So how do fibromyalgia patients measure up to the healthy controls? "Comparing adults without frequent pain, patients are 2.6 times more likely to report poor overall health if they experience pain several times a week, and 11.8 times more likely to do so if pain is experienced every day" ... as it is in people with fibromyalgia who have daily widespread pain.

The fatigue factor, which is captured in the terrible vitality score, also plays a major role in how you feel. "Fibromyalgia patients seem to have higher overall fatigue levels and experience greater daily variability than those in other pain groups. The findings of sleep studies suggest that 70-90 percent of fibromyalgia patients complain of non-restorative sleep, which accentuates pain, musculoskeletal stiffness and fatigue."

Comparing the eight component scores of the SF-36 for fibromyalgia patients to the standardized scores established for other illnesses, Salaffi writes that fibromyalgia "resembles the pattern of restrictions generally found in patients with musculoskeletal disorders or other chronic conditions such as congestive heart failure, chronic obstructive pulmonary disease, hypertension, recent acute myocardial infarction, type II diabetes, and malignancy."

If you are functioning well with your fibromyalgia, all the power to you. More than half of patients with rheumatoid arthritis can still maintain function and certainly not everyone with a chronic illness is faced with having to quit their lifelong career. However, if you are struggling or find yourself unable to hang onto a job or continue with your normal chores, let your family know that your exterior lack of visible symptoms or blood tests are not a valid indicator of how you feel. Explain to them that the severity of your symptoms are equal to that of the many serious diseases listed above. Looks can be deceiving.

* Salaffi F, et al. Clin Exp Rheumatology 27(suppl 56):S67-S74, 2009

Wednesday, May 12, 2010

Today is National Fibromyalgia Awareness Day

1. Ten to Fifteen million suffer from this on a daily basis.
2. Many have doctors who refuse to understand the pain and have family and friends who choose not to believe them.
3. Actual evidence has now come to light with research.
4. Fibromyalgia is a Central Nerous System Disorder.
5. We do not consider ourselves to have "overactive nerves" as this statement makes it sound as if we are all just "nervous".
6. Pain signals have been seen and documented on high tech brain scans of people with FM. The signals are sent without reason in the central nervous system.
7. Gray matter in the brain has been shown to dissipate at higher rates in those with FM than the normal person.
8. Not pain alone, but exhaustion, fatigue which is constant, numbness, tingling, burning, dizziness, nausea, bowel and bladder problems, memory and concentration problems as well as sleep disorders are but a few of the symptoms.
9. Chemicals to name a few which are out of whack in the central nervous system are: serotonin, norepinephrine, dopamine, and substance P to name a few.
10. We can look "just fine" yet be plagued every minute of our lives with misery. WE are tired of this disease not being taken seriously.

For more information on fibro, please visit the National Fibromyalgia Association site

Sunday, May 2, 2010

A Picture of Debra's Life

I have a disease which reminds me it is there each and every minute. It is called fibromyalgia but I am not so sure it is the only culprit. I ask myself every day what it is that plagues me and why. Energy is drained from every system I have and there is no life left except for some kind of existence. Most people don't believe it anyway and this makes it equally as emotionally miserable as the physical miseries. What can I say to describe this feeling? Nothing really. I cannot put it into words which make sense enough to explain it.

If I tried to explain it, I would describe the feeling I have now as the walking dead. What little bits of energy I have are spent just putting one foot in front of the other. Sleep is not the answer to the misery. Sleep is spent in the same discomfort as my waking hours and makes me feel even worse when I get out of bed.

Is there something out there or someone who can help me? Is there anything that will ever stop this miserable feeling I feel every moment? Am I living in some hell of my own? Is it meant to be that I suffer for the rest of my natural life?
Pain is there most of the time in various places or in every place imaginable. I turn over countless times during the night coming to some semiconscious state from the pain which occurs simply from laying on my mattress. I toss and turn all night. Some nights I cannot sleep hardly at all because my body refuses to shut down and go into the sleep mode. I have numbness and tingling which swings into my hands like a pendulum back and forth. It comes and goes at will.

I have balance and coordination problems and feel clumsy all the time. I am so tired of living this way every single minute of what is suppose to be life. I look like I am tattered and torn from some countless nights of drinking when I don't even drink. I feel worse than any hangover I ever had in my younger days. I cannot participate in my children's lives and be a mother. The only semblance of normalcy of the past days is achieved now with countless pills. Pills and more pills in order to try to function in some way. Without them the miseries take over my body full force. Many times now even with the pills it takes my body over.

I am tired of living tired. I am sick of living sick. I am depressed from the frustrations of existing in such a state.

No help in sight. No real fix to the problems. Just some existence which I must continue in order to keep going.
An FM patient

Saturday, May 1, 2010

Living With Fibro

This blog will be a picture of our lives with fibromyalgia. If you have fibro, you are welcome to contribute. If you want to know more about fibro and how it affects our daily lives, you are welcome to browse around and read what others have posted. Your questions are welcome!