The Pain is Headed Down!!

I was so relieved to wake up Monday morning with my pain down to a 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!  I can function at this level! Not very well but compared to where I was Saturday night this is progress.  After all the Level 7, 8, and 9 pain that I've had this week, it is such a welcome relief.  I have to admit that to keep the pain at Level 4,  I took a good bit of my breakthrough pain meds. I don't like taking much of it but sometimes it's necessary and the last few days has been one of those times.

I have no idea what brought on this flare.  Sometimes I can trace a flare back to a specific event.  The only think I can figure this time is the extra stress that I've had the last couple of weeks.  I was excited to be able to curl up in the recliner at a friend's house, prop my feet up and enjoy watching the kids playing and everyone having a good time.  I even got to ride the Gator up to the horse barn and pet the horses.  It's been a long time since I've been able to do that.  I didn't last long at the barn but I made it up there.  Don't care if I did have to ride the Gator, I made it there.  When you suffer from a disease like Fibromyalgia, you get excited about the smallest of victories. The difference between my Saturday pain and my Monday pain showed how wide of a range of pain fibro suffers can have. It pretty amazing how quickly that pendulum can change and how wide the change can be. When the pendulum swings toward lower pain, it's a victory I'll take.

Stress plays a huge part in the pain levels of someone with Fibromyalgia. The last couple of months that I worked proved that.  I don't think I'll ever forget how horrible the pain was when I had to give up and stop working.  My stress was so high because my working was a necessity and I was not doing well at it.  I had worked so hard to get my degree and it was becoming pretty evident that I wasn't going to be able to use it much longer.  I worried about how we would survive financially and if Bill would find a job with medical insurance.(His employer had gone under when the economy crashed in January 2009.) Not being able to remember was frightening and stressful because I knew it was going to cost me my job. I worried that I would begin to forget things that I had known for sometime.  When I went out on FMLA that last day, I fully expected to go back to work.  Little did I know that it would take almost a year for me to get back to a semi functional person.  It took a good while to accept that I would never be the person I had been .  Sometimes I not so sure that I've accepted it after all this time.

Fibromyalgia, Chronic Fatigue, Chronic Myofascial Pain, Neuropathy and is the deck of cards I've been dealt in this life.   I believe that the Lord has a reason for this and I'm determine to use it for His Glory.

I Have Slept for What Seems to be Forever and I Still Hurt

The post on Saturday was actually about Friday.  I'm not sure how that happened.  Saturday, I did sleep until I woke up. The extra rest was nice but I'm still in an awful lot of pain.  I really wish it would go away for just a little while. I tried to get up several times but I just couldn't do it.  I finally drug myself out of bed about 3:30 so that I could take a shower and get to church by 5:00.  Saturday night is our healing service and I wanted to go and have the Order of St. Luke members and our priest lay hands on me while they prayed.  Fr. Rene anointed me with oil. I always feel so much better afterward. The pain was horrible and I shouldn't have been driving but it was the only way to get there.  Bill was at work down the street from the church and he wouldn't have time to come home and get me. Those closets to me knew how much pain I was in just by looking at my face. My pain yesterday was a Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question. When we got home from church I had to lay down for a nap.  That was around 6:30.

I woke up at 9:30 this morning. My pain was down to a Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities. It's stayed there pretty much all day, a welcome reprieve from yesterdays pain.  I've not been able to get much accomplished but I have gotten a good bit of email out of my box.  I'm really hopefully that my pain will go down a little bit over night. It would be nice to be able to celebrate the holiday a little bit tomorrow.
 

Guess what? I'm hurting.

Today has been a rough one.  I didn't fix Bill's lunch this morning. All I did was let the dog out, take my morning meds, kiss Bill good bye, let the dog back in and I was back in bed.  When I finally got up from my morning "nap", I had to go to the bank and post office.  I like my routine of only running errands once or twice a month. My plan had been to get this stuff to the post office yesterday when Bill was off work to take it for me. Of course, that didn't happen.  With the holiday coming up I knew that they really needed to go so off I went. 

This was not the day for running errands.  My pain level had gone down during the night to Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely.  Level 5 was an improvement over the Level 8 it was when I went to bed last night.  My bad days seem to be becoming more severe and more frequent. I really hoping that this is not going to be my new norm but is just a stage. Only time will tell.

I've been out of bags for my homemade bread and decided to stop by Walmart and run in real quick (not literally of course) to pick some up. Thankfully there was a handicapped parking space empty but when I got inside,  there were no motorized carts. Of course, what I needed was in the very back of the store but at least I was on the right side. I grabbed  a cart and set off on my trek. I looked at the bag size but I was so tired and the pain was going up so much that it didn't register with me that the size wasn't right.  I figured that out when I got home and tried to put a loaf in them.  The "old" me would have gone back to the store and looked for the correct ones.  If they didn't have the right ones, I would have gone to every Walmart around to try and find the right ones.  These days I will wait until the next time I get out and hope that I remember to look for the right bags.

By the time I got home, my pain was up to a Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities. I took a nap and then got up to spend some time with Bill. I'm headed back to bed.  I should have been in bed 3 hours ago but  it's taken me almost that long to finally get this written. I'm determined to get a post a day written.  

My prayer is that I will be able to sleep until my body wakes up on its on tomorrow.  Hopefully my pain will go down a little bit more and I can get something accomplished tomorrow.

 Good night all.

Cynthia

The Proverbial Mack Truck Has HIt

Yesterday my pain started out as a Level 6 and eventually went down to a Level 5. ( You can follow this link to read about yesterday.)  Yesterday morning I got up at 8:15. I finished posting about 6:15 last night .  It took me from 11:30a till 6:15p to write one post with stretching breaks, lunch, potty breaks (Go Lasix!!) and trying to think through the fibro fog.  When I was finished i went to the living room to watch TV with my wonderful hubby. My pain level stared going up.  By bedtime it was back up to a Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well.

The pain kept me awake all night. I tried reading emails, I tried watching tv.  Nothing helped. I took more breakthrough meds.  Nothing changed. While my hubby., the dog, the cats and the rabbit slept soundly, I sat in my chair.  I read blog posts in Google Reader.  I drank my 7th or 8th glass of iced tea. The next thing I knew the sun was up and and I was still awake.  Hubby went off to work and I finished the form for the LTD insurance company.  I had been working on it 1 1/2 weeks.   I finally finished it about 5 tonight.  They wanted me to tell them in my own words why I couldn't work.  I managed to be polite.

My pain is now at a Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question.  I'm going to bed for  the first time since 8:15am yesterday, Wednesday, May 25. It's now 12:23am, Friday May 27.  My math is never good and the pain doesn't help but I think I've been up for 30 hours.  Exhaustion is finally taking over.  Any body want to guess how long I sleep??  I let you know tomorrow when I wake up. :-)

My Body Hates Mornings!

This morning I got up at 8:15, made my husband's lunch, kissed him goodbye and said a prayer for his safe travel. It's my morning ritual when I'm physically able to do it.  For some reason, I broke part of my ritual by not going back to bed after he left and now I'm exhausted.  Last night I only had about 8.5 hours sleep.  To function at an acceptable level I need 10 - 12 hours. I call it my morning nap although I'm sure that's not the correct term.  Usually I've only been up about 30 minutes before going back to bed.  Now that I seem to have the correct medication regime, my mornings have gotten better and I'm so grateful. My morning pain now is a Level 3 or 4, so much better than the Level 7 or 8 and a huge difference form the Level 9 or 10 that I experienced in March, April and May of 2009.

When I was trying so hard to continue working, I would get up early enough to get ready with time left to take a short nap in order to have the necessary energy just to get to work.  Most mornings that plan didn't work too well because I still had the pain from the day before.  The pain never went away. The severity of the pain (Level 7 or 8 that eventually became Levels 9 and 10) was such that I would lean on the kitchen counter, trying to find a position that would ease the pain enough that I didn't throw up just to get to the car to leave home.

Bill's hours are 9am - 6pm.  I hate that he gets off so late. it takes away from our together time and causes us to stay up too late squeezing in a few more minutes.  If his start time, was earlier I wouldn't be able to get up with him.  As long as I'm not in a flare, I'm able to get up around 8 or 8:15 to have some time with him.  He's usually already had breakfast but I enjoy making his lunch and pretending that I'm able to be a good wife.  God blessed me with a wonderful, loving, caring, God fearing husband.  Without him, I'm not sure where I would be today.  What I do know is that my quality of life would be much less.  He never complains about having to take me to the doctor because I can't understand or remember what the doctor says. He doesn't complain when I'm not able to do something we had planned or when he picks up my nine (9) prescriptions at the pharmacy.

By around 11:30 this morning I had only been up for three hours.  My pain was awful and didn't seem to have any interest in going away despite the meds.   Today's pain started at a Level 6. (You simply cannot ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities).  Now it's down to a Level 5, (You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely.)

I had much more to do than I was able to accomplish.  It was all simple things - make a spreadsheet my meds, fill out a form for my LTD insurance company, make a list of things I'd like to blog about on my Apple Creek Cove blog (I'll talk more about it later) make an appointment for physical therapy and a Physical Abilities and Limitations Evaluation.  I wanted to sew.  Sewing calms my nerves and gives me a few minutes of feeling like I can still accomplish something.  Did you noticed four of the six things on my to-do list were illness related.   I'm beginning to believe that being sick with a chronic illness is a job in itself.  :-)

Cynthia

P.S. I just noticed that this posted with the time I started this morning.  It took me until 6:15 to finish with taking breaks from sitting, eating lunch, and taking a short nap.  :-)

Finally! A Pain Scale that Makes Sense for Chronic Pain Sufferers

Since my Fibromyaliga has worsened my idea of a “10” on the pain scale has changed dramatically.  What I defined as a “ten” five years ago is so far from a “ten” today.  I was a pain “baby”. A paper cut would drive me to the point of tears.  As my disease has progressed (and yes, it does progress) my pain levels have become so high that it’s hard to arbitrarily assign it a number.  When I visit my pain management specialist, she has a form that we use to show her where our pain is.  It has a line drawing of a body (front and back) and we are to mark where our pain is and how we rate the intensity of our pain.  Most of the time, mine looks like I’m been “coloring” the body with my pencil because there is not one part of my body that does not hurt.  There are some areas that are worse than others but for the most part my entire body is racked with pain 24 hours a day, 7 days a week, 365 days a year.  The hardest part of answering any questions about my pain level is assigning my pain a numerical rating.

We’ve all heard the “rate your pain on a scale of one to ten with ten being the worse pain you’ve ever experienced.”  I often wanted to ask “today”, “this week”, “this month”, “this year”?  Some days it could be “what hour”?  According to About. Com the Numerical Scale is designed to be used by those over the age of 9. The numerical scale gives the user the option to verbally rate their scale from 0 to 10 or to place a mark on a line indicating their level of pain. 0 indicates the absence of pain, while 10 represents the most intense pain possible. In theory, this Numerical Rating Pain Scale allows the healthcare provider to rate pain as mild, moderate or severe, which can indicate a potential disability level.  Pain scales are subjective.  Remember when I said I was a pain “baby”?  Five years ago I would have said that an ankle sprain was a 10.  Comparing that ankle sprain pain to my daily Fibromyalgia pain, Myofascial pain, Chronic Fatigue pain, Neuropathy pain and the pain from my edema when it’s exacerbated knocks it down to a “1”.  I have to wonder how  “Severe” can cover four numbers? Are there stages of “Severe” that I’ve not heard about?

The Wong Baker Faces Pain Scale combines pictures and numbers to allow pain to be rated by children over the age of 3 and adults. The faces range from a smiling face to a sad, crying face. A numerical rating is assigned to each face, of which there are 6 total. I laughed out loud when I read the notes below the faces.  I literally can’t remember the last time my pain was a “2” and forget about a “0”. Like the numerical scale, it’s so subjective.  I can’t remember having anything but an “8” or a “10” going by this scale. Believe it or not, I can be at an “8 – Hurts a Whole Lot” and my pain can do their definition of a “4 – Hurts Little More.”  It’s not unusual at all for me to be “Hurting a whole lot”, then  “Hurt a little more” so that I hurt worse..

Chronic pain suffers need a reliable pain scale to convey to their pain levels to medical providers.  When my brain fog isn’t too bad, I like to do research on my illnesses. Recently I came across the fibromyalgia pain scale below at. FM/CFS/ME Resources. This Fibromyalgia Pain Scale gives a “definition” for each number, eliminating the guesswork that is involved when attempting to use the Numerical Rating Pain Scale or the Wong Baker Faces Pain Scale.  I’ll be using the FM/CFS/ME scale in my posts.

Here's the FM/CFS/ME pain scale:

Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems. 

Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual. 

Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. 

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. 

Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely. 

Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities. 

Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well. 

Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question. 

Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you. 

Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get. 

I like this pain scale because I can say that my pain is “only a 3!”  Those are the days that I wake up and go “Wow!  I feel pretty good” in the way that people without chronic pain would go "I feel awful".  It’s on those days that I try to do my errands and get as much housework done as I can without overdoing it. There’s a problem with having a Level 3 day.  They are so few and far between that I tend to do as much as I possibly can because I don’t know when I’ll be a Level 3 again.  Because of overdoing, a day that starts out a Level 3 can become a Level 6 by the end of the day.

My normal everyday pain level varies from Level 4 to a Level 8. I realize that is a wide range but Fibromyalgia, Chronic Fatigue and Myofascial Pain can cause a wide range of pain. It’s unpredictable and uncontrollable.  It can literally change in a 15 minute period. I’m sure as you read my posts over time there will be a day where you’ll see that change.  It can change because I over do it or for no reason that I can figure out. It’s life with chronic pain.  Throw the peripheral neuropathy in and well… this post is long enough but I’m sure we’ll talk about it soon. That’s just the way my life is. 

Cynthia

How did it get to be May???

I started this blog with two goals.  The first was to share with others what it's like to live with fibromyalgia. It's hard for people who don't have this disease to understand what Fibromyalgia suffers go through. Even for friends and family who see us on a daily basis it's hard to understand.  It's almost as difficult for our family and friends as it is for us in that they must accept that the only thing they can do is provide emotional support and help with day to day chores so that we don't over do and suffer a flare and/or more pain.  It's hard on the Fibromyalgia sufferer to accept that we will have a condition that has no cure for the rest of our life. A condition that causes us to have a life that changes at the drop of a hat.  In the morning, we can wake up feeling great and feeling like we did pre-Fibro and two hours later our pain is going through the roof and we can barely put one foot in from of the other. This is my life with Fibromyalgia pain.

 My other goal was to document my pain, what I am still able to do and what fibro has taken away from me.  I've been told by more than one person that a pain journal is helpful to me and my medical team because it helps to see any trends that the pain, etc. has or when new symptoms begin.  Keeping a pain journal helps to learn how best to manage your pain.

A pain journal is where you write down everything relating to your chronic pain -- what kind of pain you have, what level of pain you are experiencing, what you were doing when the pain began and so on.  Finding time to document this information can be problematic. It's especially problematic when one of your worse fibromyalgia symptoms is short term memory loss. This pain journal seems to have validated that point since my last post was November 2011.  Flares (when symptoms have exacerbated such that you become close to or bedridden) send you over the edge with pain causing all of your everyday chores to fall by the wayside. This is a time when you really need to document your pain, how it began, how long it lasted and if anything helped to ease the pain or shorten the flare.  Having your pain and activity documented prior to the flare gives you an idea of what you should avoid in order to keep your pain under control. The time when you most need to document the information is usually the time when you are the least able to do so. I plan to show my husband how to use this blog so that he can document my activity and pain when I'm unable to do it myself.

Before my fibromyalgia got to the current level, I was a very organized. Now, not so much although I'm trying to make an concentrated effort to get organized again.  Being organized is essential (in my opinion) to maintaining a home when you have Fibromyalgia or any chronic pain disease.   When your home is organized, it take less effort on your part to keep your home clean, the laundry done and the bills paid. When you home is organized, it's much easier for family and friends to help you maintain it when you are unable to do it yourself.  I'll be talking about organizing over on Apple Creek Cove and about menu planning so that you always know what you are going to eat and have the groceries on hand.

In order to have an organized and beneficial pain journal, I did a Google search on pain journals.  I found some good guidelines that I'm going to use to build my own guidelines that hopefully will help me maintain this journal.  Tomorrow I'll share the outline I'll use in this journal as well as the pain intensity rating scale.