Wednesday, October 27, 2010

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. 

Thursday, October 21, 2010

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.

Tuesday, October 19, 2010

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. :-(

Sunday, October 17, 2010

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.

Sunday, October 10, 2010

It's been a good week :-) October 1 - 8, 2010

The last week of September was one of the most stressful that I've had in a long time.  Stress = pain.  It was crazy with the pain levels going up and down every day.  Sometimes more than once in the same day.  The life of a fibromite!  The only thing that is predictable, is that fibromyalgia is unpredictable.  Fortunately, the light bill got paid through the generosity of a couple of wonderful people.  It was very humbling having to ask for help.  I'm accustom to helping others, not being the one needing help.

Once that crisis was over, My pain level started falling from the 9 it had gone up to on Thursday.  Saturday morning, it  was back down to a 6 or  7. By Monday, my pain was at a 4 or 5.  That's my goal for my pain.  There's still a good bit of pain at that level but it's a point where I can function.  I am loving it.  I know that winter will be here soon but I plan to enjoy this break from the weather and get some sewing done.

Monday, Tuesday and Wednesday were good days and my pain stayed at my goal of a 4 or 5.  For some reason I woke up Thursday in a good bit of pain.  It was up to a 7 or 8.  I had planned to go to Bible study at 10:30 but I couldn't move fast enough.  I was hurting too bad to get dressed much less leave home. I went back to bed and slept till noon and was successful.  There was a mailing at the church that I had promised to do and I was able to go do it.  All I did was sit at a table and fold a one page letter, stuff it in the envelope and run it through the postage machine  I got so stiff even with getting up own a regular basis and walking around for a few minutes.  I had to stop by the grocery store on the way home and by the time I made it home, I was exhausted.  The bed was calling my name and I climbed in and slept for several hours and still didn't have the energy to get up and do anything but move to the couch. I spent a little time with Bill but was back in bed by 9pm.

Friday morning I slept until I woke up and the fatigue had started going away but I was still moving slow.  Amazingly, my pain went back down while I was sleeping.  This morning I was able to be productive and traced a pattern to make me a top.  Hopefully, I will feel like sewing it it the morning. I had lunch with two friends today and it was good to get out and spend time with people who have hung in hear.  One of them has fibro too and we compared notes on how we were doing with the weather change.

I'm off to bed.  I hope everyone has a great and relatively pain free week.