My Fibro Thought I Had Forgotten About It.

 January 29, 2011 Note:  I've not been to this blog in sometime and discovered that I had several completed posts that I never scheduled for posting.  Hmmm.  Can we say fibro fog?  So here are my thoughts from August 18, 2010.  BTW, I'm still waiting for my SSD hearing.  Sigh...

What a day!Yesterday afternoon my fibro slapped me up side of the face and said, “Hello!Like it or not, I’m here.” My pain level shot up through the roof and put me down in the floor. Guess it thought I forgot about having fibro. Like that’s possible. I went to bed and slept, got up and had dinner with my darling hubby and then went to sleep some more. It’s 4:30 and I’ve had two naps today – long naps of 3 or 4 hours each. Truth be told, I wouldn’t have gotten up had I not had a phone meeting scheduled with my case advocate in my attorney’s office. She was filling out even more forms for my Social Security Disability appeal. Alicia is my hero today because I think I would have pulled my hair out answering those questions if I had to sit down and fill out the SSD forms myself. Just talking to her was exhausting but I was so proud that the fibro fog didn’t kick in and I was able to answer all her questions.We didn’t even have to play the guessing game over what word I was trying to remember or anything like that. Sad that I’m excited about that isn’t it? I forget what percentage of my back pay they get, but it’s worth it just to not have to fool with it. She said they have a 96% success rate and I certainly hope I’m not one of the 4%. While I doubt I get any more money than I’m getting with my LTD insurance claim, it will be nice to have it done and over with.

My pain level is frustrating me so much as is the fatigue. The heat has been horrendous and I am staying inside as much as I possibly can. The heat has made the fatigue so much worse. Usually, I can work through the pain if I have to but there is no way to work through fatigue. If it was a life and death situation, I guess I’d be on the death side. My pain even with medication is up towards 10 today. It’s time for another pain pill. I hate taking them because I know that I will eventually get to where I have to take stronger meds the more I take. But what do you do? Do you hurt and lay in bed or do you take the meds and have some sort of a life?

The myofascial pain has been awful for the last few weeks as well. The pain from my knees down has been the worse pain. My arms are tender to touch and sometimes I hurt my self just by scratching.< But my legs, oh my! On top of everything else I have severe edema and need to wear compression hose. Problem is, some times the CMP is so bad that I can’t stand the compression hose touching my skin. When this happens, I normally can’t stand the pain of putting them on. Even with the hose, my lower legs and ankles swell a lot. Without them, below my knee resembles a light pole – no calves, no ankles, just a round pole. And of course, they hurt so I spend my time with them propped up as much as I can.

On my two denials from SSD, they said that they believed I could no longer function as a paralegal or a secretary but that I could be a store clerk. Would someone please tell me, how I’m supposed to be a store clerk? I don’t think I’ve ever been anywhere that the clerks could sit down and prop their feet up or take a nap when the fatigue was just too much. I’m also wondering if they think that store clerks don’t have to remember things. One of my memory problems is that I can not retain what I learn.Teach me today and by Saturday, not only will I not remember how to do it, I won’t remember you teaching me to do it. With that problem, how am I supposed to learn to run a cash register, store rules, etc.

I’ve often heard it said that SSD turns you down 2 or 3 times just because they think you’ll go away and they’ll save money. This Southern Lady ain’t going away so they need to approve me and quit wasting everyone’s time. I’m tired, I hurt but I’m not going away. I’ve worked hard since I was 17 years old. I’ve put in my time, and now it’s time to get some of it back. I use to know someone who joined the Navy, got yelled at in boot camp and had a nervous breakdown. (I personally think he deserves an Academy Award for his acting but that’s another story.) Last time I was in contact with this person, they were getting over $20,000 a year in VA benefits.If that BS can be approved, then SSD shouldn’t have a hard time approving me.

I am climbing down from my soap box and rambling on to do something in the house. Until tomorrow folks may you pain be low and your spirits high.

Do you remember to praise God in your struggles?

As I was going through my emails, I had forgotten that I had signed up at a website called A Virtuous Woman . It's a ministry for women based on the scriptures of Proverbs 31. I've been receiving emails about a devotion series that's going on at the site and decided to check it out. I came across a discussion on 2 Corinthians 1.  I thought the verses that the writer was talking about were encouraging words for those of us with chronic health issues and all that goes with them.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4

How often do we remember to praise God and ask for His comfort when we are in the pain that we are? I know for me it's not nearly as much as I should. Several years ago Bill was having a horrible time with back pain. One night nothing would help. He took all the pain pills he could. Lay on the heating pad. All to no avail. Because he didn't want to wake me up, he said he literally crawled to the living room and then couldn't get up off the floor into his recliner. As he laid his head on the chair, he said the only thing he could do was to call out to God saying "Please help me.” Bill said that was the only prayer he could put together the pain was so bad. As he lay there calm came over him and he was able to get up in the chair, kick back and go to sleep. When my pain began to get so bad in 2009, I remembered that story for comfort at times when nothing else would help. When I turned to God for my comfort, He heard my prayers and gave me the strength to get through the day. What we consider “getting through the day” is usually much different than those without the pain we deal with every day of our lives. Still to us, it is a huge accomplishment.

Paul goes on to say:

 "We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that might not rely on ourselves but on God, who raises the dead." 2 Corinthians 1:8b-9

Verses 8b - 9 remind me of our daily battle with life. There is nothing easy about our life. We face pain, families and doctors who don't believe we are sick, financial struggles because we are no longer able to work. Even basic household chores are the same type challenges to us that marathon runners face. Some of you may think I exaggerate about the house work being like a marathon. Trust me, for some of us it is not an exaggeration. I think it's safe to say that we are under great pressure that we have no ability to endure on our own. I think you would agree that we also have times in our life where we have felt that we can't go on and feel like we've been given a kind of death sentence.

It's such a simple thing to say a silent prayer and ask for comfort from our pain or other obstacles in our way. It's a simple thing that I often forget to do until I've used up all my earthly means of finding comfort or trying to work through the obstacles for myself. I've decided to challenge myself to do everything I can to become a person who turns to God first instead of trying to solve the problem by my own means. Will you join me in taking on the challenge?

There is Something to my Life

Anxiety has its use, stimulating us to seek with keener longing for that peace which is complete and unassailable.– Saint Augustine of Hippo

Anxiety, worry, nervous, uneasiness. Use whichever word you want but those of us with fibromyalgia and other chronic pain illnesses could write a book on it. We feel that we have to think and rethink every decision we make. Making the wrong decision could result in more pain for our already pain riddled bodies. When Paul was writing the Philippians, in verses 4: 6-7 he told them

"Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life."

We should believe and live our lives according to these verses but so many of us, me included, find it so hard to do at times. The desire for relief from pain overwhelms our ability to think rationally. Job who shared our pain, allowed his desire to understand why he was suffering to make him question God. Through Job’s life, we learn that knowing God is better than knowing answers, God is not arbitrary or uncaring and pain is not always punishment. I’ve been guilty many times of asking why. Why has God allowed me to be in so much pain that I can no longer work? What did I do? What sin did I commit? The answer I always hear is "Have Faith."  So I struggle on, trying to remember that God is here beside me, catching me when I fall. Is it easy? No. Is the reward worth it? Absolutely! God has never failed me and I continue to believe that he has a plan for my life. I try to be patient and wait for Him to show me what he would have me do.

Job shared our physical pain. In Job 7, he talks to God about his pain.

"Human life is a struggle, isn't it? It's a life sentence to hard labor. Like field hands longing for quitting time and working stiffs with nothing to hope for but payday, I'm given a life that meanders and goes nowhere — months of aimlessness, nights of misery! I go to bed and think, 'How long till I can get up? I toss and turn as the night drags on and I'm fed up! My days come and go swifter than the click of knitting needles,and then the yarn runs out—an unfinished life!"

Sounding familiar? Read a little more.

"And so I'm not keeping one bit of this quiet, I'm laying it all out on the table my complaining to high heaven is bitter, but honest. Are you going to put a muzzle on me, the way you quiet the sea and still the storm? If I say, 'I'm going to bed, then I'll feel better. A little nap will lift my spirits, You come and so scare me with nightmares and frighten me with ghosts that I'd rather strangle in the bedclothes than face this kind of life any longer. I hate this life! Who needs any more of this? Let me alone! There's nothing to my life — it's nothing but smoke." (The Message)

Life truly is a struggle, isn't it? How much of a struggle depends on our response. Do we turn to God first and then our family and friends to help us or do we go it alone? If we are really honest with ourselves, most of us would probably admit that we are more likely to go it alone first. After all, we've heard all our life that God helps those who help themselves. That saying is not from the Bible but comes to us by way of Benjamin Franklin (Poor Richard's Almanac, 1736).  Mr. Franklin was a deist and so he believed that God did not play an active role in men's lives. In his point of view if man was not able to help himself, then man was hopeless.  That is simply not true.  God does not find us hopeless.  He loves us and is waiting to help us out of our feelings of hopelessness. Turning to God first is the best solution for any and all struggles we face. God may not take away our pain and suffering but He will be there with us, to comfort us, to love us and to guide us.

Philippians is one of my favorite books in the Bible. I gather so much strength from Paul’s encouraging words. I encourage you to read Philippians and especially chapter 4. I sometimes feel that I am a prisoner in my own body. Paul was a very real prisoner in a very real Roman prison when he wrote

"I don't have a sense of needing anything personally. I've learned by now to be quite content whatever my circumstances. (11b) Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am." (13)

God showed Paul how to be content under the circumstances he was in. I believe that God will also help us to be content in our circumstances, if we will let Him.  Allowing God to be in control of our lives, will bring us hope, love, joy and contentment.  Let go of your anxiety and turn it over to God.  He's waiting for you to let Him in.

May the peace of our Lord be with you today and always.

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

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.

11. WE WANT AWARENESS and REMOVAL OF STIGMA

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

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

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!