The morphine has helped and hopefully, I won't get addicted!

I've been on the morphine for about 5 weeks. I can definitely tell it's reduced the pain.  Am I pain free?  NO!  Will I ever be?  NO!  Too bad for me....

I saw my pain doctor a week ago and he upped the morphine dose from 2 to 3 pills per day.  He thought it might help me through the holidays.  I keep notes of the pain I have daily so I know what's working (not much) and what's not (a lot).  I document the drugs I take in case I have to supplement with the morphine.  I document my activities.  I looked through my notes the other day and I actually had 3 "active days" (active for me, at least).  It was amazing.  I don't know if the 3 morphine pills were the reason.  Wish I could be sure because I would do it every day.

My primary care provider doubled my dose of cymbalta.  I took it for 2 weeks.  I usually have dry mouth and constipation but this multiplied it by 10!  I went back to the 60 mg daily.  No one should have to drink magnesium citrate 2 days in a row to have a bowel movement.

When I first started taking the morphine, I expected it was to reduce the pain so that I could exercise and be more normal.  Now that I'm more active, I know that I have a big decision to make.  I cannot bare the thought of taking morphine for the rest of my life.  Not only is addiction an issue but the dose will have to be increased once my body gets used to it.  The only other option is to lay in bed most of the day.  Hopefully, I can get this figured out soon.

One of the reasons for getting the stimulator was to reduce my meds.  I'm going in the wrong direction!!!

So with the New Year, I'm on to year 19 of my pain struggle.

Pain Doctor's Recommendation

Yes, I went to the pain doctor and cried through most of the appointment.  He agreed that this surgery has set me back.  He wants me to move - who should stay in bed all day if it can possibly be helped?!

In an effort to give me a "jump start" to a positive recovery, he prescribed morphine!  What?  That's when I really started boo hooing.  Really?  That seems so extreme.  Never in my entire life would I have expected to be on morphine at some point.

This is not who I am.  I was once a successful healthcare administrator.  I had a 32 year career.  I had to stop working in 2008.  It had all become just too much.  It's pretty hard to give up a $90,000 annual salary.

Now, I'm 30 pounds heavier, lay in bed half the day - from the pain, and miserable.

I want my life back!!!!  I know I'll never be the same.  I'm no spring chicken but would like to be somewhat normal, at least.

Once I got through the initial shock, I agreed to the morphine.  Of course, my husband flipped out when I told him!  I've been taking it for 6 days.  I guess it helps a little.  I'm still taking tylenol 2x daily, occasional advil and flexeril.

Yesterday seemed to be a reasonable day.  I was on my stationary bike for 25 minutes and did a few light things around the house.  I was falling asleep at 7:45 last night so decided it was time to sleep.  Apparently, the things I did yesterday were exhausting for me.  I didn't sleep well after 10 pm and finally got up at 3:30am today.  Couldn't sleep because of the pain.  Fortunately, in my circumstance, I can always go back to sleep later.  If I still worked, then what would I do?

I'm back to the anger again.  I'm seeing my psychologist next Tuesday.

Tired of being patient, tired of fighting...

I thought writing about this would make things better for me psychologically but no.....  I thought I was getting better and maybe I have, a little.  I'm afraid of the pain which keeps me from doing things. Sometimes, the fear of the pain immobilizes me and sometimes, I push through it.  The result is usually horrible and then I can't see through the pain.

EVERYONE and I mean everyone thinks they have the answer.  I wish they did.  I've tried 80% of the things that are suggested by doctors, family and friends.

I'm 3 weeks post op and going to the pain doctor today.  I may have improved SLIGHTLY but not even close to being able to resume a normal life.  I can't even do the activities I did before this last surgery.  This surgery was not the answer.  Of course, I'll hopefully think differently in the near future.

I'm soooooooooo tired of fighting.

Trying to increase my exercise

9 weeks post op and still dealing with the mid back pain.  The pain doctor wants me to move more.  I've spent as much as 25 minutes with no resistance on my stationary bike.  I try to walk 10-14 minutes on alternate days.  Everything I do that creates stress on my legs causes extreme pain.  This cramping pain I have seems unbearable at times.  I'm "afraid of the pain" which makes it tough mentally to attempt to increase my movement/exercise.  I have to push myself to do it.

Now, they suggest I take a muscle relaxer and tramadol before I exercise.  If I have pain after that, then take percocet.  I am so fearful of becoming addicted.  One of the reasons I had the neurostimulator was so I could get off my medication.

The neurostimulator makes the cramping feel worse so I often end up turning it off.  Right now, I wish I hadn't had this surgery.  The stimulator isn't helping my pain.  The only thing that is would be the percocet.  Great-I'm at square one.

Slow and steady wins the race?

Continuing improvement - slow but steady.  Yesterday, I had the best day I've had in 2 months.  I'm using the stimulator all day.  Sitting continues to be painful.  I'll need to get new program updates soon.

Today is not quite as good as yesterday.  I have extreme low back pain and pressure in my hip.  The muscle cramping continues.

Slight Improvement

Yesterday, I took a 10 minute walk.  Again, cramping all the way.  If I walk on a slight incline, the cramping worsens.  I had the stimulator on but that didn't help.  My leg felt weaker - not sure if that was from the stimulator or not.

This morning, I spent 12 minutes on my stationary bike.  I had a little pain - I was tempted to ride longer but don't want to take a chance on impeding my recovery.

I sat for a total of about an hour so far today.  When I sit, it's usually for about 15 minutes at a time.  I'm up and down to minimize the time spent sitting.  My leg has started cramping this morning.  I guess it's from the sitting.  I know I had leg cramps/spasms before my recent surgery but can't remember if it was triggered by sitting.

I have the stimulator on now and will try to attempt working on a craft project.

Going to the grocery store..

For the first time in 7 weeks, I went to the grocery store on Sunday.  It went well although I paid for it on Monday - a lot of pain and had to take the big pain pills throughout the day.

Yesterday was a much better day - thankfully.  I took moderate strength pain pills 3 times and the "big gun" pill only once.  It was the best day I've had in a long, long time.  I was able to spend 11 minutes on my stationary bike.

My mid back continues to be a problem.  I believe I have weeks to go before that's gone.  After that, I'll have to deal with the sitting, standing and exercising problems.

My mental health comes and goes.  It mostly depends on how bad the pain is.

So far today, my pain has been slight except for my neck.  I had a cervical fusion 14 years ago and it continues to be another source of pain.  Once I get through the back issues (if I can), I'll have to try to find a better method of controlling my neck pain.  I've had botox injections in the neck and shoulder which helps to relax those muscles.  It probably helps to reduce the pain by 20% - not enough!

Feeling a little desperate!

Desperate may be too strong of a word.  Although, sometimes, that's exactly how I feel.  I've tried to be patient through my latest recovery.  I know I'm making improvement related to post op pain.  However, it's the muscle and low back pain that's frustrating me today.

I went to the store with my husband yesterday evening.  I thought I was doing okay.  Maybe it was because I had taken a pain pill.

At 3:30 this morning, I discovered that I wasn't doing so well.  My legs hurt so bad that I had to get up to take a pain pill.  It felt like someone was massaging a bruise.  I'll be exhausted today!

I get that I'm not the only person with pain.  I get that there are many who are in much more pain than I am.  I get that there are some with more debilitating pain.  Before my surgical decompression and L4-5/L5-S1 fusion surgery in 2010, I was pretty good at realizing that I could be thankful that I wasn't worse than I am.  Now, I allow myself to grieve over the lost of my past life when I could do the things most people can do.  It took 18 years of searching for the cure.

I thought my surgery in 2010 was the fix but I was wrong.  Basically, I have "failed back syndrome".  Their is no cure.  I can only try to manage the pain using the stimulator, pain medication and laying in bed.

No walking today..

After the leg cramps I had yesterday, I couldn't even bare the thought of walking today.  I decided to try my stationary bike.   I was able to do only 5 minutes due to my leg weakness and cramping.

Hopefully, the leg cramps will ease up or go away completely once I get back in shape.  Prior to my surgery, I had the cramping but thought the stimulator would block those pain signals.

When my pain doctor recommended the stimulator, he said it would only help the burning pain radiating down my leg.  The pain down my leg is secondary to the muscle pain, cramping and weakness I have.  When I did the trial, it seemed to help.  The trial was for 1 week and I've had the permanent stimulator in for almost 7 weeks.  Hmmm?  I was told this wasn't a cure - that it would block the pain signals from the nerve to the brain.  So, it needs to get to blocking.  They expect 50% improvement in my pain.  That remains to be seen.  It's hard not to get frustrated after everything I've done to try to improve my quality of life.  I know it will take time but I struggle with having patience.

The stimulator representative told me it would take time to get the right signals to block my pain areas. If I haven't gotten the desired results in 6 months, they tell me that's when I should be concerned.  The paddle lead in my spinal cord is still "scarring in" so that can make a difference in the pain relief.

Back to bed, my mid back muscles are killing me although I've taken a pain pill this morning!

Slowly but surely

The pain from my mid back muscles has improved so now I'm trying to walk for 10 minutes a day to see how it goes.  I went outside for my first walk in 6 weeks yesterday.  Even though I had the stimulator on, the muscles in my left leg cramped so bad that I had to walk very slow and stopped several times.  I went for a walk again today.  It was pretty much the same as yesterday except the leg cramps were much worse.  I'll see what happens tomorrow.......

Continuing to heal.....

I went to my pain doctor yesterday.  I needed to discuss my plan to reduce my medication and to increase my activity.  Although my mid back pain following the surgery has improved, I continue to need medication to minimize it.

Currently, I have 3 goals following my recent surgery.  They are:

1. Reduce or stop my pain medication completely.
2. Ability to sit for more than 20 or 30 minutes at a time.  (I sit for a total of 2-3 hours during an entire day.)
3. Ability to exercise (I gained 30 pounds following my surgery in 2010.)

The plan:

1. Continue taking the muscle relaxer and pain medication.  Attempt to reduce medication as healing process continues.
2. Make every effort to move around rather than lay in the bed for pain relief.  My doctor said, "it's better for me to take medication and move around than get off the medication at this point".

So, the healing continues.  I'm ready to begin a life with reduced pain.  I would love to get my life back!

Added stress!

When I was in the hospital after my surgery, I had some nausea and vomiting.  Not fun but fine, it's pain or drug related and I'll deal with it.  They treated it in the hospital and I continued to have nausea periodically. Upon discharge the following day, I was given a prescription for nausea medication.  I've had bouts of nausea periodically during my recovery.  I've dealt with it by taking the medicine or eating chicken noodle soup.  Today, I started wondering if it could be related to my surgery.  I did a google search and .... sure enough, it can be a complication from the stimulator being implanted in my spinal cord.  Perfect!  I'll be monitoring it to see if I can find a pattern and keeping my fingers crossed that it's simply a coincidence.

Thankfully!

I was able to see my neurosurgeon last Thursday.  He listened to me, the patient and prescribed more pain meds.  He was much more compassionate than the nurse practioner who had been responding (or better said, not responding) to my care needs.

Since then, my mid back pain has improved somewhat.  The neurostimulator improves my leg pain but not my back pain or upper thigh cramping/muscle spasms.  Sitting continues to be a big problem which is very frustrating.  Sitting has always been the biggest source of my pain and has been with me for the past 18 years.  Trying to find ways to relax, go to a movie, work (the list goes on and on) without sitting is a challenge. 

The St. Jude representative has adjusted the stimulator twice in 5 weeks.  We have to find the right program to meet my pain needs.  The rep. will continue adjusting it until we get it right, hopefully!  I have an appointment October 2 with my pain doctor and it will be adjusted again.  I'll give it 6 months before starting to freak out that it's not helping my pain enough so I can get off the meds I take for pain.

Too much!

I recently had my fourth spine operation.  The purpose of this surgery was to provide me with a way to manage my pain without medication.  A spinal cord stimulator was permanently implanted.

Three and a half weeks following this surgery, I continued to have slightly debilitating upper to mid back pain.  The muscles around my incision and my upper/mid back area are painful and cramp whenever I move.  I asked for a change in the muscle relaxing medication. After my 2nd call, they did call in a new prescription.  

My pain medication, oxycodone ran out Sunday.  Since I was still having pain, I asked for a refill.  Seem reasonable?  Apparently, the nurse practioner didn't think so.  She said, "let's see how you're feeling on Thursday when you come in for your appointment".  Really?  You're going to discount my pain and make me wait 4 days?  I felt like I wasn't being listened to or cared for.  I called the office and asked them to let the surgeon know I had pain management issues.  After my call, the nurse practioner gave me a prescription for lortab.  Hello!  You know my history.  I'm a pain patient.  I've taken lortab in my past 18 year pain history.  It doesn't provide me with pain relief and makes me nauseated. 

My post op appointment is tomorrow.  I'm scheduled to see the nurse practioner who ignored my needs.  There's no way I feel comfortable with her as my "healthcare provider".  Hopefully, I'll be able to see the surgeon instead!