I Need Patience as Well as Trust

July 2, 2010

This morning I began reading Sheila Walsh’s new book, Beautiful Things Happen When a Woman Trusts God. I’ve only read the introduction and first chapter but already see so many ways where her battle with depression parallels my battle with fibromyalgia. I have a hard time trusting because of things that happened in the past. I hope that when I finish this study, I will have learned to trust God more in my everyday life, to finally, once and for all, turn my life completely over to Him, trusting Him to direct my path even when I don’t understand where it is headed. I think I’ve always trusted God on the big stuff but the day to day stuff has been a challenge. Sheila says that waiting on his direction and trusting in his presence helps us to become more like Christ. I need patience as well as trust. I want the instant answers that I receive when I am in charge. Maybe the key to me trusting is to have patience to wait for his will to become clear to me.

Jesus wants us to trust him so completely that we no longer question anything that he puts into our hands or on the path he has chooses for our lives. That’s my biggest struggle right now. It’s hard to trust when your body rebels and you hurt so badly that you cannot pull your self out of bed for days on end. It’s hard to trust when your mind is so foggy that you can’t remember the next word in the sentence. It’s hard to trust that all will be well when your income is cut in half and the bills go up. It’s hard to trust when the bill collectors are calling. It’s hard to trust when you aren’t able to do the things you use to. You get the picture.

Job wrote that “Yes, God does these things again and again for people. He rescues them up from the grave.” Job 33:29-30 (NLT) Isn’t that wonderful news? Over and over God is there for us and will pick us up when we fall or when someone turns against us.

Sometimes in the process of learning to trust, we suffer. We don’t like to suffer. Who would? And who would believe that suffering can be helpful? The Bible tells us that suffering truly can be helpful so I work toward finding that help. Suffering is helpful if we turn to God for understanding, endurance and deliverance. Turning from him will only make things worse and harden our hearts. When we lay our suffering at his feet, we are able to learn from a trustworthy God. When allow ourselves to learn from God, it prepares us to accept help from others who are obeying God’s order to help others.

“When God’s people are in need, be ready to help them. Always, be eager to practice hospitality”. Romans 12:13 (NLT)

“Here are some of the parts God has appointed for the church…those who can help others”. 1 Corinthians 12:28 (NLT)

In Joshua 1:5, God assures Joshua that He will be there for him just like he was for Moses. He promised … I will not fail you nor abandon you. Aren’t those beautiful words? God is here with us every step of the way. I think about how Joshua must have felt following in Moses footsteps. As the saying goes, those were some big shoes to fill. Joshua went from being an assistant to being the person who would finally lead the Israelites into the Promised Land – all two million of them. I’m sure that he must have felt overwhelmed. God always reminded him to be strong, courageous and follow God’s word for direction. That’s what we need to do as well. Joshua 1:7 – 9 tells us:

"Be strong and courageous. Be careful to obey all the instructions Moses gave you. Do not deviate from them, turning either to the right or to the left. Then you will be successful in everything you do. Study this Book of Instruction continually. Meditate on it day and night so you will be sure to obey everything written in it. Only then will you prosper and succeed in all you do. This is my command – be strong and courageous! Do not be afraid or discouraged. For the Lord you God is with you wherever you go.” (NLT)

Chronic pain, narcotics and the DEA

January 2010

I've had an awful case of bronchitis and it has finally started breaking up. I've stopped feeling like I was going to cough my toenails up so I think that means I'm better.

During my down time with the bronchitis I got the call I had been waiting on for months. No, Publisher's Clearinghouse didn't call. Something even better to a chronic pain sufferer. Dr. D's office called the morning of the 14th and said they had a cancellation at 4:00 that day. This Southern Lady promptly took it and got there early - and I'm never early. On time but never early. :-) You see, Dr. D is my pain management specialist. I've been on the waiting list to see her since mid October. For someone with Fibromyalgia, Chronic Fatigue Syndrome and Rheumatoid Arthritis, a pain management specialist is a very important person. I have reached a point in my illness where only narcotics relieve the pain - they don't make it go away but they do make it bearable to a point where I can function. Those of us in this situation find it hard to get the narcotics that we need to treat our pain because of our wonderful lawmakers in Washington and the DEA. Our internal medicine physicians and even our specialists refuse to write prescriptions for narcotics for the treatment of chronic pain, even tho they feel prescribing these drugs is warranted, because of threats by the DEA to take away their licenses for doing so. Pain management specialist are there to take up the slack and stand up for our right to not be in pain. However there are so many people with chronic pain and so few doctors willing to work in pain management that it takes months, if not years, to get in with one and get your treatment started.

I hope that 2010 will bring a time of change and awareness about the differences between addiction and dependence. I am not nor are my friends with chronic pain disorders addicted to our drugs. We don't take them to get "high", we take them to function. We would rather not take them but we do so that we can have some level of "normal" in our lives. These drugs allow us to take care of our families, to be wives, mothers and grandmothers, to volunteer at our churches and in our communities. We want to be contributing members of society.

Yes, I am dependent on my narcotics but I am no different than a diabetic who is dependent on their insulin. No one would ever say that a diabetic is addicted to their insulin. Why can't chronic pain sufferers get the same compassion and respect?

Fibromyalgia - Both a Blessing and a Curse

On a Facebook fibro support group several people said that they felt blessed to have Fibromyalgia.  This created quite an uproar and they were called unkind, crazy, etc.  I didn't have time to stay online for long that day.  I offered a suggestion to solve someone’s dilemma they had posted about and signed off the computer.  When I got back on the next morning, the discussion had grown to 66 comments.  As I started to write a response I realized that it would be way too long to read as a post so I moved here to my blog where I say what’s on my mind.  I think you’ll find that I’m pretty passionate about this.

To the group of people that say that Fibromyalgia is not a blessing – I agree.  It is not a blessing that I had to stop work at age 52 after I had just gone back to school and gotten a degree that would allow me to find a better paying job.  It is not a blessing that we struggle because we only have 50% of my income.  It’s not a blessing that when I first became ill I had to try and talk my hubby into going and doing activities we had planned but I was unable to do.  It’s not a blessing that I had to give up my duties as a Eucharistic Minister at my church for several years.  It’s not a blessing that my cognitive function had diminished to the point that I couldn't remember things from one day to the next.

However, there are ways to turn all of that into a blessing. It’s how we look at the life that we’ve been given. It’s a blessing that I can no longer work because as career driven as I had become, it would more than likely destroyed my marriage.  My marriage is worth more than any paycheck or the luxuries that it would provide. It’s a blessing that my employer had paid for the Long Term Disability insurance so that we do have 50% of my income while I not so patiently waited on my Social Security Disability hearing.  It’s a blessing that when the economy fell and my hubby had to change careers and go into retail to find a job, I’m home to spend his days off with him. If I was still working Monday - Friday, 9 to 5, we'd never have the same days off. It’s a blessing that I have learned to encourage my hubby to go do things with the guys and not worry about me being home.  We appreciate each other more when he comes home.  It’s a blessing that when I could no longer serve as a Eucharist minister, a position in the altar guild opened up so I’m blessed to be able to prepare the altar for Eucharist.  I’m blessed to still be able to serve my Savior and my church.

I am blessed because the Lord put me and my now best friend on the same Yahoo group at just the right time for us to meet.  I’m blessed to have a best friend who loves the Lord, who has Fibromyalgia, who loves being a homemaker like I do and who loves to sew and is happy being “domestic”.  That’s the job description I have now and I love it and feel blessed for the opportunity.  I blessed to be a homemaker.  There are many days when I can’t clean or cook.  But I can be here to offer my hubby a cold drink when he comes in at the end of the day.  I am blessed because I have the time to sew for family, friends and charities. 

I feel blessed because "all" I have wrong is Fibromyalgia, Chronic Fatigue Syndrome, Chronic Myofascial Pain, Peripheral Neuropathy and severe edema in my legs and feet.  I am blessed because unlike my BIL who died of cancer or my friend who died of a brain aneurysm, I am here to witness the birth of my grandchildren and to watch them grow up. I get the joy having my young granddaughter ask me to teach her to sew and my  grandson asking me to teach him to bake after watching me make hamburger buns one day.  I am blessed to see my our goddaughter run to me down the aisle at church with a huge grin on her face.

I'm blessed because 11 years ago this week, I met the most wonderful man who loves me for who I am, whose heart breaks that he can't do more for me.  I am blessed with two wonderful children who do all they can to help by cleaning my house and helping with projects that my hubby can't get time to do.  I am blessed that my grandchildren understand that MiMi’s muscles don’t work right and they find things for us to do together that will be easy for me.  I am blessed to have friends that can look and me and know that it’s not a good day even when I tell them it is.  I am blessed that I am able to use the computer to tell others that there is hope.

There is hope for us and we cannot give up.  Giving up is what causes our life to fall apart.  Giving up is why we lose our happiness.  Giving up is what causes us to miss out on the pleasures of life.  Giving up is when we refuse to keep going by refusing to use canes, walkers and wheelchairs.  Giving up is when we are too proud to allow friends and family to help us.  Giving up is not the answer.

If you pain is too bad for you to function and your doctor is not willing to prescribe the stronger medicine you need, find another doctor.  It’s your right to do so.  If you are worried about becoming addicted to a narcotic pain reliever, get over it.  If that’s what it takes to manage your pain so that you can enjoy life, take it. There’s a difference between addiction and it being a medically necessary drug for you to maintain your life.  You aren’t taking them for “fun”.

Use those canes, walkers and wheelchairs so that you can go out to dinner or the park with your family.  Don’t be ashamed to have a handicapped tag or hang tag for your car. Take your medications with you and pack a small cooler with snacks and something to drink. Plan several days ahead for an outing and limit your activity so that you have the energy to go out.  Yes, you may “pay” for it afterward but what’s worse – feeling sorry for yourself because you couldn’t go or being tired with more pain but with the wonderful memories of the day you had with family and friends.

All I ask is that you think about it.

There Is Something to My Life

Written July 10, 2010.

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.  Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am." 

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.

How Many People are Misdiagnosed?

More thoughts from 2010.
 
I’m afraid we’d really be outraged if we knew just how many of us are misdiagnosed.  I think this happens many times because the doctors aren't paying attention to what we are saying because they think we are just nutsy boltsy with that Fibro stuff.  In the case of my neurologist, he doesn’t even pay attention to what other doctors are saying. 

My neurologist became my neurologist because he was the doc with the first available appointment when my PCP wanted me to see a neurologist.  I was sent to rule out MS, to find out why I can't turn my neck far enough around to come close to touching my chin to my shoulder and to find out what was causing horrendous hip and leg pain.  My exam consisted of him looking at me, asking a couple of questions and poking at my hip. This guy sat down, looked at me and said I didn't have MS and he felt sure the pain and not being able to turn my neck was that Fibro stuff. He did order an MRI as a "courtesy" to my PCP but only of my lower back and hips.  He wasn't in the room with me 10 minutes and it may have not been that long. 

My MRI showed 2 degenerated disk. (Just that Fibro stuff.)  Fortunately, that diagnosis meant I got to see a neurosurgeon who is wonderful!  He sat down with Bill and I and explained about Fibro and Myofascial pain and how they are different. Then he explained why surgery would be his very last option - he couldn't guarantee he wouldn't make the Fibro worse fixing the back pain.  Fortunately the first nerve block worked. 

I see a different neurologist for EMG studies for my neuropathy. This doctor noticed that I had to turn my body to look where most people would have just turned their head. He ask me about it and told him it had been going on for a while but the first neurologist I saw had attributed it to my Fibro.  He said it was not from the fibro and that we had to find out why it was like that. He also saw my original referral and that I didn't get the brain MRI so he ordered that along with the cervical MRI. Turns out I have 2 degenerated disks in my neck. (More Fibro stuff - I don't think so) I also have spots on my brain from transient ischemic attacks (mini strokes) in the past.  

The next time I went to the cardiologist I took the MRI report.  My cardiologist wanted a different kind of MRI called a MRA to be sure that it was from mini strokes.  Apparently MS can mimic mini strokes on MRIs in the beginning.  The treatment of my high cholesterol depended on what the white lesions (I think that’s what he called it) really were. In reading up on the mini strokes I found out that microvascular disease is common in people with autoimmune diseases. (Maybe it is from that Fibro stuff.)  So he sends me back to my neurologist extraordinaire - NOT.  (Found out he’s agnostic and a narcissus so maybe he does think he’s God.)  I tried to make the appointment with EMG doc because he was the one that found it but since he only does pain issues, they wouldn’t do it. 

The day of my appointment was a really foggy day.  Bill couldn’t go with me and I had forgotten to call my friend Cathy who goes with me to appointments when Bill can’t.  When he came in I explained that I was having a really bad day memory and comprehension wise so I may be slow to answer his questions and would need to make notes while he talked.  He looked at me and said “is that the stuff y’all call fibro fog?”  Then he said that he had looked at my MRI again and there was no need to do the MRA my cardiologist wanted.  He said he’d do it if I insisted but couldn’t guarantee the insurance would pay for it since he didn’t think it was medically necessary.  I couldn’t take a chance on that so I had to do without it.

Should I have insisted on the MRA?  I don’t know. It probably is from the mini strokes. Since we don’t know for sure, I’m taking two different cholesterol medications and a blood pressure medicine because my cardiologist is having to treat me like it is mini strokes.

So if I have had this kind of runaround, how many people are there out there that have been through this as well?  How many people are out there without a proper diagnosis of something that may kill them in the long run? 

I'm Back! I Hurt! What's New?

I can't believe that I've not posted since January 14!  So much for part of the life changes I had planned. I did a update on how they are coming along over on Rambling Thoughts of a Southern Lady. 

It's been crazy around here since Thanksgiving. I wrote about some of it  here and here.

Between the holidays, kids coming to visit, sinus infections, a reaction to a new drug, the flu and the stomach flu, not much of what I planned has actually happened.

My pain has gone up and down much like a kid's see saw.  It's been a Level 4 and it's been a Level 9 it even hit Level 10.  Sometimes it's been at both ends of the scale in a 24 hour period. I can't take the flu shot because I had Guillain-Barre Syndrome when I was 14 but I've been blessed to not have had the flu for several years.  This year I got the flu.  For about 4 days my pain stayed between a Level 7 and Level 9.  I probably could have taken more medicine for the pain than I did.  Since I was also taking antihistamines in an effort to try and open up my sinus passage and I was home alone much of the time, I was afraid to take much more that my normal.  I would rather hurt and still be here to see my grandchildren grow up than to take a chance on mixing the wrong medicines or amount of medicines.

About a month after that I got the stomach flu that was going around.  I woke up one morning and felt pretty good and I was loving that.  A couple of hours later I took Mr. Supportive to work so that I could have the car to run errands.  The errands didn't happen.  I suddenly felt nauseous and got my window down just in time to deposit breakfast down the side of the car in the parking lot where he works. Right outside the big double glass doors.  The doors that his co-workers were standing at watching the morning unfold and drinking coffee. Of course the guys came running out to see if they could help.  Sigh... Talk about wrong time, wrong place.

I headed home and made it about 3 blocks when I knew I was going to be sick again.  Since I knew the Goodwill store had a clean bathroom, that's where I went.  I grabbed a washcloth off the rack on the way to the back of the store.  Thankfully I was able to make it into the bathroom and wet the washcloth before I got sick again.  After what seemed like forever, I was able to pay for my wet washcloth (or at least I hope I did), get to the car and make it home before I was sick again.  Once again my pain was up between a Level 7 and a Level 9.  After I had been home for a little while, it hit a Level 10 that I hadn't experienced since 2009. Between the pain and throwing up more than I did in both my pregnancies combined I barely moved for almost a week.  I was in a lot of pain when I had the flu but it was nothing like this.  This was the pain that I had before I was prescribed any kind of pain medication but this time I was having it taking 60 mg of Kadian every 12 hours and 30mg of morphine every 3 or 4 hours.


But as the saying goes, this too shall pass and it did.  It took me a while to build my strength back up but I did and started getting back on track.  For a while...

This is where this part of the story ends and a new chapter begins.

 

Checking in

It's been a while since I've posted.  It's been a combination of feeling like I've been hit with a Mack truck or being busy trying to catch up from being run down by said truck.  I was getting back to feeling like I'd been run over with a Volkswagen until the rain and cooler weather hit yesterday.  Oh my!!  When it hit it was quick and viscous. My pain went from my normal Level 5 to Level 9 in about 15 minutes. I was out running an errand and thought I was going to have to call a friend that lived close to where I was and see if I could veg on her couch until Bill got off work and could come pick me up.  I decided that I wanted my own bed and made it home driving slowly and on the back road.  Went to bed and only slept about 4 hours but it was enough to keep me up all night.  I've been up since about 8:00pm Wednesday night with the exception of about 2 hours this afternoon.  I'm headed to bed now to hopeful sleep more than 2 hours. 

Check out Apple Creek Cove, my blog where I'm going to attempt to write about ways that I've found to be able to maintain a semi normal level of domestic bliss in spite of my Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Peripheral Neuropathy, Peripheral Lymphedema, Sjogren's Syndrome, Arthritis, four herniated discs, Carpel Tunnel Syndrome, short term memory loss, sleep apnea and depression.  (I need to check my doc's notes because I feel like I'm leaving something out of my collection of diagnoses.)



As I head off to be at 4:13AM, here's my final thought for Thursday:

My Social Security Disability Hearing and Why I Write this Blog

I'm really not sure what I was expecting when I went to my Social Security Disability hearing.  What ever I was expecting, it was totally different.  :-)  I had worried so much about parking and getting to the building.  About having to stand in front of the building and wait for Mr. Supportive to come back from parking the car.  That was a lot of wasted worrying.  The Memphis SSD office is in a one floor building with parking right by the door.  We arrived at the same time as my attorney and she secured a conference room for us to go over how the hearing would proceed. Rachel Cohen is a great attorney but more importantly, she's a wonderful human being who did her best to calm my fears.  

Instead of this

Unfortunately, Mr. Wonderful was not allowed in the hearing room. Him being there would have made it a lot easier.  Being a paralegal, my point of reference for a hearing room was a court room.  The idea of being "on display" in a big room had really bothered me.  I was glad to discover that a hearing room was nothing more than a small conference room with a table where the court reporter, my attorney and I sat.  The administrative law judge did have a semi- traditional "bench" at the end of the table and I think he was wearing judicial robes. 

It was more like this.

I was able to hold myself together for the first part of the questioning.  Things like my name and what positions I had held in my employment life.  Those questions have clear, factual answers.  It was when I was asked to describe how I became ill.  How it affected my ability to work.  How it affects my ability to function at home.  Those answers are also clear and factual.  At the same time, they are subjective, emotional and based on my inner experience as they happened.

As I told about going to school to be a paralegal and how that was a dream come true, I was calm.  The calmness began to go away when I started telling how my world had changed.  How I could not remember how to use the skills I had worked so hard to learn.  As I told the administrative law judge about the times I was taught a new task in my new job, only to not only not remember how to do it, I didn't remember being taught, the emotion began to overwhelm me.  As I told him of the physical pain and fatigue that cause me to not be able to go to work, the tears began to fall.  Several times, I had to stop and compose  myself.  It was probably the most emotionally painful time of my life.  The hardest question of the day was the last one.  Why did my illness keep me from working full time.

That's when the tear ducts opened wide as I tried to tell the administrative law judge how I had always been the "go to person" in the office.  How I had always been the one at work early and staying late.  How I had always been on top of my game, admired by everyone and receiving nothing but the highest reviews. How almost exactly a year before I had to stop working, I was recognized at my graduation ceremony as graduating with the highest honors - a 4.0 gpa. I worked full time and went to school full time and did both well.  Then without warning, I started becoming a person that I didn't know.  A person who was so fatigued that walking in from the parking lot caused me to have to sit down as soon as I got into the building.  Many times, I didn't think I'd make it into the building and thought about sitting down on the curb to rest.  I became a person who was in so much pain that no matter what I did or what I took, it wouldn't go away.  The pain grew to be so bad that I would throw up trying to get ready for work.  I became the most undependable and useless person I had ever seen.  I didn't understand it and I didn't want that to be my life.  By this point, I was pretty much inconsolable.  All I wanted was to get out of that room and into Mr. Supportive's arms.  


The administrative law judge had been reading the statements from family and friends and the printouts from this blog as he listened to my testimony.  Before we finished up, he asked me how long it took to write a post.  I told him it depended on the day.  On a good day, I could do it in a hour or so.  On a bad day, it could take several hours up to several days.  Then he asked me why.  Why did I write?  I don't think I really knew until he asked me that question. 

In the beginning, it had been to chronicle my pain so that he could read it when that day came.  It was at that moment that I realized that it was much more than that.  I realized that it was also for all of you who might read it.  That somehow it would help you not to feel alone.  It's for your family and friends who don't know what to make of this disease that has completely changed you. We suffer from a hidden illness, an illness that is considered by some, including those in the medical profession, to be nothing but laziness or "in our head".  I'm here to tell you that it is real.  It's only "in our heads" in the memory loss that it causes and the false nerve firings that magnify pain in our body.  It is a real illness that needs a real cure.  Too many people have suffered for too long, physically from Fibromyalgia and mentally at the hands of their family, friends and doctors who don't believe it exists.  

I sometimes feel that the "world" is run by Google searches.  It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard!  Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can.  Write your state legislators, your Congressman. Become active reading the information that the various Fibromyalgia organizations publish.  Let the world know that we are legitimately ill and we deserve to be treated as such.

I have come to believe that God has a plan for me. A plan to use my illness and suffering to encourage others who suffer like I do.  I'm not sure how it's suppose to work because there are so many days when I can't function.  In addition to Fibromyalgia, I have Chronic Myofasical Pain, Chronic Fatigue, Peripheral Neuropathy,  Lymphedema, Carpal Tunnel Syndrome and 2 herniated discs in my neck and 2 in my back. I trust that He will show me and I pray that I can help those of you who read this in some small way.

Where Did the Weekend Go?

I can't believe that it's already 11 o'clock Sunday night. Why is it that when I feel OK, time flies but when the pain is high, time seems to move so slowly.? My son and daughter came up for a visit Saturday and I realized that it was the first time I could remember when I felt like visiting instead of taking pain meds and sleeping.  When they come to visit, no matter how bad I feel, I still try to put on the "Mom" face. They drive too long and I see them so infrequently to let my fibro, chronic fatigue and chronic myofascial pain interrupt our visit.  Friday night and Saturday my pain was only a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications or Level 4: The pain is getting stronger, you are taking more OTC medications but they don't last long. You begin to cut back on your activities in favor of just sitting down. When I mentioned it to them and my husband, everyone agreed that it had been way too long since I was in decent shape when they were here to visit. I find it so sad that feeling OK is something noticeable and being in pain is so normal that I no longer even notice it.


Fibro has changed so many things in my life including visits from my children. Before fibro when they came up to Memphis we would go to the park or the zoo. Now Monica and Dave come up while Brian says home with the kids. She leaves them home so that she can do my deep cleaning and help me go through things that I've had in storage for going on 10 years. We've got the house decluttered for the most part and the clutter is pretty much confined to the garage.  Since we gave up our storage unit years ago, we've not been able to get the car in garage.  I'm hopeful that we'll be able to get the car in the garage soon.  That would make things so much easier for me.


I've never had a garage except for the first couple of years that we were here so I didn't realize how important having one could be.  Having the car in the garage during the summer means that the car would be in the shade with the windows down.  Not getting into a boiling hot car would be so nice. Heat takes so much out of me. It makes it so hard to do anything.  Spring and summer use to be my favorite seasons because I love to fish, hike, camp and ride the Harley behind Bill. Since my fibro has gotten as bad as it is now, the summer heat is not my friend.  That means that most of my outdoor activities have pretty much gone away Since the heat has had such a negative on me, having a cooler car that the a/c can cool down quickly will be wonderful.


Cold weather has its down side too. The colder it gets the harder it is to get around.  My joints are so full of arthritis that they they don't want to work.  The cold weather makes my already painful muscles hurt even worse.  Going outside to scrape the iced windows makes me so miserable that it's hard to actually go where I need to go by the time I get ready to leave.  Being able to have the car be warmer and not have to scape ice off the windows will be wonderful also.


I'm headed to bed now.  It's been a good weekend and my pain has stayed down.  I don't want to stay up too late and not get enough rest.  That will send my pain back up. I've had two good days.  It's been along time since I've had three.  Maybe, just maybe, I'll wake up with my pain still around a Level 3 or 4.

October 28 - November 1, 2010: Pain level 7 - 9

Thursday  I went to the grocery for a few things and then drove to the other side of town to pick up a part for the washer.  Two errands shouldn't do me in but it did.  Total time gone from home: 4 hours; Pain level = 7.  Friday I worked on Bill's and my costumes.  It was hard to get going Friday morning but I pushed myself.  Bill needed his costume for work Saturday and I wanted mine for the Halloween party.  Big mistake pushing myself. Time gone from home: 0; Pain went up to an 8.  I was barely functioning.   Saturday came around and I took Bill to work so we could ride to the party together after work.  I ran by Hancocks looking for the gold elastic I needed to finish my costume.  They didn't have it so it was off to Hobby Lobby to see if I could get it there.  I found the elastic at Hobby Lobby so on the way home I stopped by Walmart to pick up chips and dip for the party.  While I was at Walmart, I got a phone call to meet the guys at the lodge to pick up chairs and tables they needed for the party.  I finally got home around 3 and had just enough time to put the elastic in my sleeves and change clothes.  I was determine to go to this party because last year my pain was too bad to go.  I picked up Bill after work and we went to the party and visited for about an hour.  I was so tired and in so much pain that I couldn't fake it any longer. I was forced to break down and tell Bill we needed to go home.  My pain was at a 9 and the fatigue was so bad I could barely get out of the car and into the bed. I really thought he was going to have to carry me.   I was out of the house for a total of 8 hours and it made me so that I couldn't  function due to the pain and fatigue.  Sunday, I had to go to church because Bill was scheduled to read the Old Testament scripture and he had to work.   Right after church, I met the guys back at the lodge to put the tables and chair back up. I was so tired and hurting so bad that I stopped by a friend's so that I could kick back in the recliner and take a nap so that I had the energy to get home.  It's great to have friends that are that understanding.  Total time gone from home: 4 hours; Pain Level 8 - 9.   All day today (Monday), I've been in bed except for getting up to go to the bathroom and to eat.

I don't understand why Social Security Disability keeps telling me that I can work as a sales clerk.   Why can't they see that I can't function for 8 hours outside of the house?  I can't even leave the house for 4 hours without my pain going up so much that I can't function.

Hot dog! The pain has come down again! October 27, 2010 - Pain level 5

Thank goodness the pain has come back down quickly.  I'm back to my usual 5 or 6 so I guess that means that the new meds are working.  Dr. D added Nortriptyline,  a tricyclic antidepressant used to treat chronic pain.  I've not had much leg pain at all since I started it so it appears to be working.  She also wrote a script for outrageously priced Lyrica but my co-pay  is $60 and I just can't afford it.  Since the reasonably priced generic Nortiptyline  ($8.00 co-pay) seems to be working fine alone, I'm not going to get the Lyrica filled.  I took Lyrica from April 2009 till January 2010 and it made a difference for about 6  months.  Then as quick as it had made a difference in the pain, it stopped working.  My question to her was "why do you think it would work this time?"  Her response was that maybe it was working and I didn't realize it.  I can tell you it wasn't working because there was no difference in how I felt after I went off of it 10 months ago.  If it wasn't working 10 months ago, why would it work now?  I would be remiss if I didn't admit that I'm waiting for the pain to come back.  That's the way these horrendous diseases I have act.   I feel my physical body is pain bi-polar and subject to change at a moments notice.   With fibro, chronic fatigue, neuropathy and myofascial pain you're pain free one day and in so much pain you can hardly breathe the next.  Did I say the next day? I need to correct that because I can be pain free one minute and in agony the next minute.

Monday and Tuesday stress brought my pain up to a 7 or 8.  The spin switch on the washer decided to die and I was stressing about how much it was going to cost to fix it and how we were going to pay for it.  I had to pull the laundry out of the water and wring them out.  There were 3 pairs of jeans in the load and they were so heavy and awkward to deal with.  I could feel my pain going up.  Thankfully Bill was home so he took over the job for me.  Then he loaded them in the car and we went to the laundromat.  Sitting on the wooden benches waiting for our laundry to be done sent the pain up a little bit more.  I had to take a couple of breakthrough pain pills and just knew that this morning I would wake up unable to move.  It was great to be surprised and wake up without pain.  It's days like yesterday that remind me that I can't make plans too far ahead and that I won't ever be dependable again.  I just never know how I'm going to feel from one hour to another much less one day to the next.

It's bedtime now and my shoulder and neck pain is going up again so I'm off to take my medicine and hit the hay. 

More medicine! Oh Yeah! October 20,2010 Pain Level 8

I slept until 11:45 today.  Would have slept longer but I had a 2:00 appointment with the pain management doctor.  Yesterday's rain really did a number on me and it wasn't even a hard or long rain.  The middle of the afternoon yesterday the pain started going up and kept going.  This morning the pain was still there and just as bad.  As the day progressed it got worse because in addition to the increased fibro pain (and it got worse the longer I sat), the neuropathy pain got worse as I had to walk a long distance to get several places. Sitting at Dr. D's office always makes the pain worse because let's face it, chairs in waiting room are not designed for comfort.   I love my pain management doctor but it's always a long wait to see her.  The reason that it's a long wait is because of what makes her patients love her so much.   Dr. D treats you like you are the only patient she has and never lets on that there is 5 or 6 people waiting to see her.  She and I had a good talk about how the pain from the neuropathy has increased and what we could do for it.  I came home with three new medicines to try to help the increased pain.  I've often said that I can live with pain at a 5 or even a 6 but when it gets beyond that, I need help.  I can't function if it gets above that.  I guess I'm a just a baby when it comes to pain.

I'll keep you posted as far as how the new meds do.

It's raining. Just what I didn't need. October 19, 2010

I'm not sure what the humidity is but it's 100% in my body.  The rain is just a light sprinkling but the damp is ripping my muscles apart.  It's 61 degrees which is on the cold end for me so I'd be having more pain today anyway.  But throw in the dampness and I'm miserable.  The only thing I've been able to accomplish today is sitting in the chair with my feet propped up checking my email and Facebook.

My legs are still aching something horrendous.  For now, the burning has gone away. I guess this is what I have to look forward to with the neuropathy.  Add the pain the damp weather has flared up and I can barely stand.  My arms feel like lead weights.  I once typed close to a hundred words a minute. Now I'm doing good to do twenty and today I may not be doing even that.  Since I have the lap top on my lap, my arms are resting in my lap as well. That's a good think because I don't think I could hold them up to type. My head feels like an lead weight as well.  I have a horrible headache and my neck feels like someone took a baseball bat to it.  As I sit here, I keep dozing off so I guess I'll have to go take a nap soon. That's not how I wanted to spend Bill's day off. :-(

Good days, Bad days and Learning to Adapt: September 10 - 17, 2010

This past week has been one of ups and downs much like the week before. Tuesday we went to visit Bill's mother but my legs were hurting so bad that I sat in the car and napped while they shopped at Walmart.  I knew I would never be able to make it through the store.  Friday I had to go to the store if we were going to eat and I was exhausted from the walking when I finished.  Had I remembered to get one, I would have used one of the motorized carts but I didn't remember until I was halfway through with my shopping and wondering if I was going to make it to the check out.

Mornings are beginning to be harder again as the temperatures are beginning to drop into the 40s at night.  When that happens, I can barely move until it warms up around noon. Late evenings are beginning to be hard as well because as the temps go down, it gets more and more difficult to walk.  To say that I walk like an old lady would be an insult to old ladies!  Most of them walk better than I do. 

I've tried to accomplish as much as I possibly can during these good weeks.  I hope to have a few more because I'd like to accomplish a little bit more before winter weather shuts me down for a while.  I'm setting up a dedicated sewing room so that I can feel like I have somewhere to be productive.  It really helps with the depression to feel like I can contribute something to the household even if it's just sewing my own clothing and gifts.

With fibromyalgia, neuropathy and arthritis, it's all about finding a new way to do things that is less painful.  I say less painful because there is no such thing in my life as pain free anymore.  Hand sewing is difficult because of  the arthritis in my hands.  Thank goodness for my sewing machine.  Using scissors is difficult these days as well but I've learned to use a 60mm rotary cuter to cut most things. I have a smaller one that I can use when my hands are not quiet as bad.  Last year for Christmas, Bill bought me a new sewing machine that can be operated without a foot pedal.  I prefer to use the foot pedal but on days like I've had this week, it's nice to have that option.  I spent most of the last week feeling as though my legs were on fire under my skin.  My feet were numb and had the pins and needles thing gong as well as "falling asleep" so that I couldn't feel the foot pedal.  Being able to sew with the push of a button was good.  Anything I can do like that helps with the depression.  I WANT to be a productive member of society.  Unfortunately, MY BODY WILL NOT cooperate.

As I type this, my right hand is swollen and hurts.  Especially the middle finger. That poor finger hurts so bad and is swollen much more than the others.  The knuckle closest to my hand (is that one the first knuckle?) is so large that I can't straighten it out. Holding a pen or pencil is out of the question. Typing is painful but not as much because I've learned how to hold my hands to cut the pain some. 

Memory becomes a bigger problem every day.  I've pulled out my Daytimer from my working days to make lists in one place in something that's easy to find .  I've also started putting  notes from important phone calls there as well because I forget what arrangements, etc.  I've made about our bills and that kind of thing.  I've got notes in my phone too.  The notes in my phone have kept me from buying patterns or supplies that I already have more than once.  There's a reason that pattern was cute - I've already bought it.  Yes, I did need a 3" block template - last month when I bought it.

It's time to rest my hands because my pain is up to a 7 or 8 from writing this.  Thank you for sharing my life.

September 30, 2010 - Pain Level 9

Where did September go?  This week has been full of me realizing it was the end of September. The house note had to be paid by the 29th and even though I had reminders written down in several places, I almost forgot to pay it.  The only way I remembered was that I looked on line at the bank account and saw where my LTD check had been deposited and I knew that it had to go to pay the house note.  Yes, house notes are usually due by the 15th.  However, when fibro fog and cognitive problems are running rampant, you tend to forget things.  Well several months ago, I completely forgot to pay the house note. Yep, didn't even think about it until the mortgage company called and asked if we'd like to continue living here.  Fortunately, they were really good about working out a way for us to get caught up over several months and allowed us to make the payment each month when my check came in. 

My next realization that it was the end of  September came when I realized the light bill was due October 1 and that was Friday!  My pain level is so high today because it's been a very long, humiliating and humbling day with me either sitting for hours stiffening up or standing and causing my legs to start swelling.  Because I can't work and my LTD is only 50% of what I made and medicine had to be purchased to the tune of almost $500 this month, we can't pay the light bill.  There's just no way to make less than $50 pay a $550 light bill.  So this morning I was at a local agency by 7:30 to get in line for my chance at part of the funds they have to help the many people that need it these days.  Mornings are my worse time of the day. I can barely walk normally.  Picture the shuffling feet of a 90 year old woman.  That's me in the morning.  I got there almost on time and then proceeded to sit for over 2 hours.  We were packed into the waiting area so tight, there was no getting up to move around.  This resulted in the little old lady shuffle being even worse when I was called back because I was still stiff.

As the social worker was interviewing me, I could tell by the look on her face that I was not making sense. I stopped talking, gathered my thoughts and explained my problems to her.  She understood and we started over with her talking slower and me stopping to think about how I was going to answer before I opened my mouth.  That was much more successful. 

So here I sit stiff and hurting and hoping that tomorrow is a better day in more ways than one.

September 29, 2010 - Pain Level 8

If you read the post for the 28th, you know that I did not pace myself and enjoy sewing without overdoing it.   After going to bed a 5am this morning, I got up around 9:30 when Bill left for work, took my morning handful of pills and went back to bed.   I set the alarm for 11:20.   I'm not sure how many times I hit the snooze and how long I just plain slept through the alarm going off but I finally got out of bed around 12:15.   I felt like I needed more sleep but had to get Bill's lunch made, shower, drop his lunch off at work and get to the church by 2:00 to get the newsletters fold and to the post office before 4.   I got it all done and enjoyed my time folding the newsletters and visiting with the church staff.   Once I dropped the newsletters off at the post office, the adrenalin or whatever it was that was keeping me going started fading.

I decided to stop at Hobby Lobby and see what they had on the clearance row.   I knew that if I went straight home, I would hit the bed and not get up till Thursday morning.   I found a birthday present for my best friend and some card making supplies to make her birthday card and a card for our newest granddaughter that's due the end of October.   Thank goodness for clearance rows.  Without it, we'd never have anything new for us or gifts for others.   Hobbies which help me keep my mind going would be nonresistant.  But when your family income drops over $30,000 in a two year period sometimes you can't pay for food, medicine and utilities much less hobbies.

People ask why I choose to stay home and not work.  CHOOSE?????  Why would I choose to have to decide if I'm paying the light bill or the phone bill this month?  Why would I choose to decide which of my prescriptions I'm going to have filled this month?  Why would I choose to stop working a year after having spent 2 years working to get a degree by taking 18 hours a semester at night and working 40+ hours during the day.  My body forced me to stop.  Had I had the energy, I would have gone down kicking and screaming but there was no fight left.  I wanted to be a paralegal!  I wanted to retire at 60 or 65 not at 52.

Most of us work until we literally can no longer get out of bed to go to work.  For me, my cognitive abilities went before my body caught up with them.  My last year of working, I was learning a new job to go with my brand new college diploma that I received at the "young" age of 51.  Finally a college degree and a professional job where I could work my way up to a good living and a good retirement.  Fibromyalgia and Chronic Fatigue took that dream away.  Beginning 6 months or so before I finally quit working, I could be taught a new task on Monday and by Wednesday, not only could I not remember how to do it, I didn't even remember being taught it.  If I didn't write everything down, and I mean that literally, I couldn't remember what anyone said to me or asked me to do.  The end of February 2009, the pain and fatigue kicked in with a vengeance.  I could barely wake up in the mornings and really thought that I would have to sit down on the bumper of a car in the parking lot to make it into the building the fatigue was so bad.  And then the pain.  Oh the pain.  I would stand over the kitchen sink in the mornings and cry while bending my body all sorts of ways trying to get the pain to ease up so that I could get out of the door.  Finally, I couldn't do it and my doc put me on FMLA for 3 weeks.  I slept the entire 3 weeks.  Almost literally.  I got up to go to the bathroom and ate because Bill made me.  This was a scary time because Bill was without a job and I was petrified of what I knew was coming but refused to accept.  I had to work.  I WANTED to work.  But the writing was on the wall.  I went back to work but it was short lived.  I could not keep up the pace that a paralegal has to work at.  My memory was getting worse and the pain was excruciating.  Finally on May 1, 2009 I could do it no more.  I looked at my boss and said, "I'm going on my approved intermittent FMLA".  Fortunately, Bill went to work for a company with insurance on May 3 but took an almost 60 % pay cut to have a job.

I am headed to bed now, after not even being up 12 hours.  But I'm exhausted and I have to be up by 6:30 in the morning to drive to the MIFA office.  Tomorrow will be one of the most humiliating days of my life.  MIFA is one of those organizations that help people that have had their finances devastated by illness or  job loss.  It helps those who have borrowed from Peter to pay Paul until they can't anymore.  We've gone from being a family who supported the organization to a family that needs their help.  With a $550 light bill and $40 to pay it, I'm going to have to ask for help.  Me, the person who has always supported these organizations who help others.  Me, who never dreamed in a million years that I would need their help.  So as humiliating, humbling and scary as it is, I'll be there with everyone else in my situation, hoping and praying that enough people have been generous with their money so that I can have my light bill paid and we don't have to worry about the lights being cut off Monday.

We are not alone.  Everyone I know who suffers from Fibromyalgia suffers a huge economic hurdle because of their illness.  We're fortunate that even though the premiums and co-pays are high, Bill's work offers insurance benefits. Most of my friends don't and do without desperately needed medical care and medications.  Don't judge a book by it's cover.  You don't know the physical and fiscal pain that person is going through.

September 28, 2010 - Pain level 4

Tuesday was one of the best days I've had in months!!  It's for sure the least amount of pain I've had in a while.  While really digging having the windows and doors open, I sat at the dining room table and worked on a baby quilt for a friend's new son.  It was so good to be creative again.  :-)  It's almost finished.  I'll post a picture when I'm done.


Unfortunately, I was feeling so well that I didn't pace myself properly.  :-(  I was having so much fun putting my blocks and rows together that I didn't have the common sense to go to bed at a decent hour.  That's what happens with those of us who have Fibromyalgia, we finally get a good day and we try to make up for the days, weeks or even months of feeling like death warmed over.  The result is a very bad day or days afterward.  I finally came to my senses about 5 am Tuesday night/Wednesday morning and went to bed.  I really wanted to stay up and finish putting my slashing on the quilt.  I got it pinned on and went to bed.  I fold newsletters at the church on the fourth Wednesday so no staying in bed all day to recover.  What have I done to myself and when will I learn???

September 4, 2010 Pain = 7

Today was fairly productive.  I was actually able to get out the door by 11 am.  Not bad considering I didn't get up until 8. It only took me two hours to drive 4 miles to the bank, make a deposit at the drive up window and then go to Walmart and pick up 6 items.  By the time I got home, my head was pounding but I stayed up instead of taking a nap so that maybe I can get my sleep pattern back on schedule.  My biggest accomplishment for the day was that I was able to  sort my button stash by color and match up sets if I came across them. 

Keep in mind that I got up at 8 am.  It's now 2.23 AM and I am just now beginning to get sleepy enough to go to bed and hopefully fall asleep.  I just don't understand how I can sleep 18 hours one day and the next not be able to fall asleep for 20 hours or so.  I did take advantage of being up and have showered and washed my hair for church in the morning.  Since I'm up so late, I'll need have as much prep done as I can to get there by 10:45.  Bill's ushering and I really want to go to church.  So I have to be ready to leave by 10:20 because ushers can't be late.  I don't want to take two cars because I think it's a waste of gas and because I am cutting back more and more of my driving because it's beginning to be difficult with the cognitive function problems

Good night all.

September 3,2010 - Pain level 9

Today was one of those strange days.  I woke up this morning about 4:30 a.m. and felt pretty good.  Fixed Bill's lunch, cleaned the living room, dining room and kitchen and then checked email before 8 a.m.  I ran a couple of errands and came home and started organizing my new sewing room.  It's going to be so nice to have a room dedicated to my sewing and crafting.  I'll be able to just turn off the light when I finish sewing and not have to put things up.  Sometimes when I have to get everything out, I'm too exhausted to sew or craft by the time everything is set up. So this will be nice if I ever get it organized.

I got some depressing news today.  It seems in rare cases  you can have a recurrence or flare of Guillain Barre Syndrome just like fibro and chronic fatigue.  What joy - not! After my friend Janie told me about it I did several Google searches.  The general consensus seems to be that only 2% of those who have had GBS will have a recurrence but when you figure that those of us who have had this rare disease account for only 5% of the population, it seems we have a good chance for recurrence.  So now I'm left to wonder - is the numbness and heaviness in my arms a recurrence of the GBS or is it FMS?  What about the problem I'm having with my eyesight "going south" suddenly?  My legs are feeling so heavy.  What's up with that?  And the fatigue is worse than it has been in a long time. My head even feels too heavy to hold it up.
 
So here's the strange part of the day which is really not unusual.  Around 5pm, I began to feel tired, got the old fibro fog going and my pain levels shot up. All in about 45 minutes.  We didn't have anything planned but a quiet night at home which is a good thing. There's no way that I could go anywhere.

Anyone want to take a guess as to how tomorrow will go?  Will I feel like crap at bedtime or will I have the energy to continue my story about my life with fibro pain.

Welcome to My Life with Fibromyalgia Pain

This blog is going to serve as my pain diary.  Pain diary you ask?  Yes, Pain diary.  I am in the process of applying for Social Security Disability.  I’ve already been denied twice and now I’m waiting for a hearing before an Administrative Law Judge.  Part of the evidence that my attorney and I will submit is my pain diary. I began keeping a pain diary when I first got too sick to work.  It was hand written and in a big official looking black bound journal.  The problem is, my hands hurt so badly at times that I can’t hold the pen to write.  If I keep trying, I may be able to write a little but even I can’t read it.  For some reason typing isn’t as difficult.  I thought of just having a typed journal kept safe on my hard drive to print off and take to the hearing.  Then I decided that if I was able to help just one person by sharing how I became ill and my trials with life that it was worth putting it out for all to see.

What's Wrong With Me

I suffer from Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Short Term Memory Loss, Peripheral Neuropathy and Peripheral Edema. My Internist interprets my SED rate as positive for Rheumatoid Arthritis but my Rheumatologist says it’s not quiet high enough. Most of these are Autoimmune Disorders. All of these conditions add up to one thing – I am in pain 24 hours a day, 7 days a week.  Even with prescription pain medication, I live with pain that is around a 5 or 6 on that scale they show you at the doctor’s office.  On a bad day, 10, the highest number on their scale, in no way describes the pain that I feel.

I am not alone.  Fibromyalgia alone affects over three million people in the United States alone.  You can develop fibromyalgia syndrome (FMS) at any age, though, typically, a diagnosis will be made between the ages of twenty and sixty.  Fibromyalgia tends to hit people during their middle adult years and those who are diagnosed with fibromyalgia feel the burden of FMS at points in their lives when they are at their busiest. That was true with me when my fibro got so severe I couldn't work.  I had finally gotten a college degree at 52 and begun a career as a paralegal.  When people ask me why I don't work, I tend to want to slap them.  Instead of that, I tell them about how I worked 40 - 45 hours a week, carried an 18 hour class load and maintained a 4.0 average in college.  I tell them about how I started being unable to remember how to do tasks in my new job.  I would be taught a new tasks and two days later, not only did I not remember how to do it, I didn't even remember being taught how.  I tell them about the days of dragging myself out of bed to go to work and standing over the sink in the so much pain that I was throwing up.  I tell them about pain literally so bad that I had to crawl from the bed to the bathroom because I couldn't stand up. I finish my story with a recap of the day that my supervisor and I sat down and talked and I realized that I could never learn a new tasks and was losing my ability to remember what I did know.  It was at that point that I knew I had to let my pain win and give up.  I fought a good fight against Fibromyalgia but in the end, it beat me to the curb.

How Did I Get Here?

I first begin to experience fibro symptoms after a case of Guillain Barre Syndrome (GBS), an autoimmune disorder, when I was 14 years old.   GBS is a rare disease that can be life threatening. It occurs after a viral or bacterial infection.  GBS initially affects the peripheral nervous system. I believe that I  had Miller Fisher Syndrome, (MFS) a common clinical variant of GBS, it’s identified in approximately in 5% of all Guillain Barre Syndrome cases. It is a syndrome of acute external ophthalmoplegia, ataxia and areflexia without significant motor or sensory deficit in the limbs.  MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward. The difference between MFS and GBS is that different nerve groups are affected such that paralysis in GBS tends to start in the legs and move up, where in MFS it starts in the head, affecting eye muscles, balance and slowly descends to the neck, arms, etc. MFS does not generally have the life threatening aspects of GBS but can be very difficult to live through with double vision, nausea, weakness, difficulty. There is a close connection between antiganglioside antibodies which cause Peripheral Neuropathy and the Miller Fisher Syndrome.  When I had MFS, I could walk ok.  The problem came in with navigating something as simple as stepping up onto or down from a sidewalk and I couldn't climb steps

I still suffer from areflexia, the absence of neurologic reflexes such as the knee jerk reaction and Ataxia – wobbliness, incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb. I believe that I have remnants of Ophthalmoplegia, a paralysis or weakness of one or more of the muscles that control eye movement. The condition can be caused by any of several neurologic disorders. It may be myopathic, meaning that the muscles controlling eye movements are directly involved, or neurogenic, meaning that the nerve pathways controlling eye muscles are affected.

Tomorrow we’ll talk about how my Fibromyalgia has progressed over the last 40 years.

My Pain for Today

September 2, 2010: My pain today has gone up and down from the usual 5 to a 9.  I’ve had a headache and hurt so bad that I slept about 18 hours of the last 24. I managed to get up for a couple of hours to drag myself to the bank with Bill to sign some paperwork. As soon as I got home I went back to bed and slept from 9:45 a.m. to 3:30 p.m. Got up, took some more medicine and was back asleep till 6:15 p.m. I had no energy to do anything but sleep.