Chronic Pain

A 49 year old female living and dealing with lumbar back pain and fibromyalgia. Sharing things I do for relief, reduce stress and control weight gain.

Thursday, October 9, 2014

Where I am

Here I am 6 weeks into tapering off of pain medication.  I'ts going better than I thought it would.  My latest step down brought me to one half in am, one fourth one forth in afternoon and bedtime.

Initially I was taking 2.5.  One in morning, one again when I just couldn't take it any longer. (Anywhere from 2-4 pm depending on what I had to do that day) and 3-4 days a week a half at bedtime.

My first adjustment was one half three times a day.  After a week of that I was feeling like stepping down was for the birds and to slow for me. I decided to stop taking bedtime dose completely,  then stop taking afternoon.  NOT.  Two nights in a row of no sleep at all put me back on the half at night for a couple nights then I moved to a quarter at night for two weeks.

During this time I had a conversation with my pharmacist and she really encouraged me to take it slow.  I heard everything my doctor said.  It's not about the amount you were taking.  It's about how long you've been taking it.  She said the minor withdrawals I was experiencing will be much worse if I just skipped doses instead of tapering slowly.   The rebound period will be more intense after if I didn't take it slowly. 

I just wanted it to be over.  However, I took her advise and stuck with the plan.
My next move was half, half, quarter.  Two weeks later half, quarter, quarter.  Next week I will move to quarter three times a day. 

Funny thing is even though I have my hives flaring up right now, fatigue, night sweats and brain zaps,  it's not so bad.  Pain wise I mean.  As far as my back.  What you find, at least for me, after a couple days the half works the same as a whole.  It lowers my pain number to the same and wears off at the same time.  Same when I moved to the quarter.  It takes a couple of days but you adjust.  I'm understanding how it doesn't just relieve pain but makes you body dependant on it.  I've always understood the difference between addiction and your system being dependant, but now I'm experiencing it for real. 

I have more faith than I ever had in the last 6 years that some parts may get better. The ultimate goal is to have my stimulator give me enough relief to not need any narcotic and find a medication that WORKS for the fibromyalgia.  It's been long enough to stop dwelling on why I have to live with this.  It's about keeping myself comfortable in the safest way possible. 

I had to stop by my psychologists office to pick up some samples last week.  She happened to see me at front office and asked how I was.  I explained where I was in tapering off the pain medicine.  I shared with her my thoughts of how even though my pain increases at some times of the day it hasn't effected my mood.  In fact, I seem to be in a better mood than usual.  She wasn't at all surprised to here me say that.  They are downers, that's a down side she explained.  They can make you moody and depressed.  I'm now wanting to believe that if I can get off completely and the other drug my rheumatologist wants me to take for my FM works the depression will be better. 

Nothing wrong with being hopeful.  I've been hoping for years with each coming appointment something would change.  I'm just a little impatient getting to that point.  Some days the FM is worse than my back.  I saw my rheumatologist last week and he said I need to be off the pain meds for two full weeks before starting the new medicine.  (It takes that long to be completely out of your system) This will be the toughest part.  Nothing to help with pain and the withdrawals I will experience.  I have to believe it will be worth it.

I picked up a prescription and the pharmacist asked how I was doing. I let her know where I am and how it was going.  She gave me a huge boost of encouragement and some advise on what to do after I complete this last step down.  It felt so good to get some encouragement.  It's been hard, but I feel so positive about it.

Hanging in there full of H.O.P.E.
Theresa

Thursday, September 4, 2014

A new plan

As I mentioned in my previous post I've made some decisions regarding my medications.  At my last visit with my rheumatologist he discussed a medicine with me that has new studies out to help with FM pain.  He asked me to go home and research and for some time I forgot about it.  When I did look it up I was disappointed in what I found because the drug seemed to be used for patients detoxing from high doses of narcotics.  At first I was kind of upset thinking he had the wrong idea about the amount of pain medication I take.  At one visit I remember him telling me that some time your pain medication can actually cause your pain to elevate if it is blocking another medication your taking.  Then it dawned on me that he said to make sure and research the medication along with FM pain.  Not just the drug name alone.

After researching this way I felt better about what I found and read.  There were several studies and some patient reviews also.  I can tell you I'm shocked at my own self for even trying this after trying 3 different drugs for FM treatment.  Then some years later trying the Lyrica again.  This was the second time I'd heard this information from  Dr. C and he is my favorite doctor of all of them and I don't think he'd recommend the drug if he didn't think I'd get some results from it, even if small.  The draw back is you cannot take it if you are taking a narcotic.  Which means I have to get off of my pain medication before I can even try it.  Just thinking about trying scared me to  death.  Everything I do revolves around my pain medication.  What time I go somewhere, when I try and exercise, when I do any house work.  I could go on and on.

Right about the time I was considering this option it was time for my 3 month check with my PM doctor.  I talked to him about it and he was pretty positive about the medication too.  I started to have a little hope.  We discussed what was involved and how long it would take.  He said if I wanted to do it the best way with the least withdrawals it would take about 2 months.  He said towards the end my pain would definitely increase for a period of time then it would level off.   A lot of patients who have taken a pain medication for a long period of time and get off find that if they make it through getting off they find their pain is not any worse than with it.  

So why would I do this then?  For a long period of time I've hated that I have to take pain medication to get through my day.  I hate the stigma that comes along with it.  I hate how long I've been on it.  I hate the side effects and the harm it's doing to my body long term.

My stimulator allowed me to cut back, but it doesn't work well enough alone.  I can't say "it won't hurt to try" because if you've ever had to come off of a medicine you need to taper off of (not just a narcotic) you know how sick it can make you.  If this other medication works for the FM then maybe, just maybe things will even out.  I'm ok with not being any worse.  Of course if it's Gods will that I get "real" relief then hooray.  If not, I'm thankful to not feel worse for stopping the pain medications.  

Back to our conversation....he asked me when I wanted to try and I told him that I'd like to get through the holidays then get started.   After a few weeks passed and my husband and I talked about it more I decided I was ready to get started.  Why wait?  Maybe I could be done and better by Christmas.  So I made the call last Thursday morning.  I had an attitude going into it because I'm always complaining about the staff at that office.  I really like my PM doctor but it is so hard to deal with his staff.  Once I get to the back and I'm with him it's all good.  I've threatened so many times to go somewhere else but it's just not that easy with my stimulator.  

The nurse called me back about 3 that afternoon.  I told her in detail what I wanted her to discuss with him for me.  I told her if she had any questions it should be in my notes from my last visit because we talked about it.  It was Thursday and he wouldn't be there Friday.  She told me not to expect a call until Monday or Tuesday.  So until Tuesday afternoon I was patient.  After that, I was annoyed.  So typical of this office.  I called Wednesday am and left a message in case they weren't aware it was approaching a week I'd first asked for a return call.  By 3 pm no call.  I called back and talked to the front office.  This lady was certainly honest.  She told me they get a complaint every day regarding this matter.  I asked her to leave my message personally to the doctor.  She also said she would inform the office manager of what happened. 

Today, still no call by 9 this morning.  I decided to reach outside the office for help.   It was a long shot, but I didn't care anymore this an important decision I'd made regarding my health and I felt like my doctor didn't care about ME at all.  I text Mr. R and asked him if he happened to be working with my doctor that day.  He called me an hour later and said he'd been in surgery all morning but not with my doctor.  Mr. R told me he had no problem texting my PM doctors nurse and mention that he was setting up an appointment with me for reprogramming (this was true) and I mentioned the issue going on with them getting back with me.  15 minutes later I received a call from the nurse.  "what can I help you with Ms. Theresa?", she asked me.  Are you really serious?  I left a detailed message with your co-worker (his other nurse) and a detailed message on your machine.  She said the other nurse was working at another office this week and she really didn't know what I needed.  As far as the message I left yesterday she looked in my chart and didn't see any notes about what I left the message about.  I started crying and the next thing I knew my doctor was on the phone with me.  My tears were real, but I'm here to tell you sometimes a few tears goes a long way.  Don't be afraid to cry :-)

I did have to jog his memory and he remembered our discussion.  We talked for about 15 minutes and he reminded me this wouldn't be easy either way I did it.  He said my dose was low enough I could just quit cold turkey but I'd be down and out sick for 2 weeks.  His exact words were "you'll feel like your dying" and I believe him.  Or...we stretch it out slowly over 6 weeks.  Same results but a lower levels each day.  I will be completely off in 2 months.  I'll be dealing with some intense pain he said but it should level off in a month or so to where I was when we started.  As soon as I'm completely off I can start taking the new medication.  I'm really anxious about this entire process.  Who can put there life on hold?

I plan to try and keep you informed on how it's going.  I hope to get through this without to much discomfort so I will feel like getting on my lap top and catching up.  You wouldn't believe the emails I need to check.  In October I have an appointment with Dr. C so I can get some encouragement from him if I need it.  He's going to be glad to hear I've made the choice to at least give the medication a try.  

Wish me well and thanks for listening.  I know some of my readers understand exactly where I am and what my experience will be like.  
Living with HOPE (hold on pain ends)
Theresa


Sunday, August 31, 2014

Depression

We've all heard about many movie stars taking their own life.  Leaving behind grieving family, friends and fans.  We commonly think, Wow...they had it all.  What could possibly cause someone to want to take their own life?  I have to say none have effected me the way the death of Robin Williams did.  There are many differences between his life, mine and others who suffer from depression.  One being how famous he was and the fact he made people laugh for a living.  Oddly, though his life was different, we shared something in common.

Watching one of the many tributes to him on different television shows a clip was shown from an interview back some years ago when he had just been released from rehab.  He talked about how this "voice" somehow always creeped back in to convince him he was not ok.  That he was not happy no matter how grand his life appeared.  It was a dark place.  

He spent many years hiding his depression.  I'm sure the alcohol was his go to drug to feel better.  I know many people are thinking how could someone so comical, who brought people to tears with laughter, be sad?  It's an evil thing that eats at you and as hard as you try and fight it, it seems to win over all the time.   After hearing that it really hit home for me.  I have my break downs in front of people sometime.  I think most believe it's my sensitive  or defensive side.   At home, it's different.  I am different.  I don't have to put on a show or pretend on a grand scale so no one worries.  I prefer to be alone and I've always thought it was ok until I understood I had depression.  

A little "voice" eats at me all the time.  It's always trying to convince me I have nothing to be happy about.  That my life stinks and will never get better.  I have plenty of friends who check on me now and again.  I love my family and know they love, pray and care about me.  When your battling depression, it's just not enough sometime.  I've never thought about taking my life.  However, I often think of what it would be like to be "normal" again.  Whatever normal is?  I really don't even know anymore.   I've asked myself, "how much worse can it get? How much more can I take?" I never have an answer, but fight to convince myself it's a blessing from God everyday that we're here.  Pain and depression.  Deal with it.  It really could be worse.  

I prefer to be alone, than with a group of people.  Why?  Because then I don't have to pretend I'm happy and everything is hunky dory.  I can't tell you how often I cry on my ride home.  I hold it in as long as I can, then it just flows out.  As much as I hate it, I think it's important to not hold it back.  I hate being fake.  I want to "really" be happy.  That evil little "voice" convinces me every time that everyone else's life is better.  I really know that is not true.  I can name so many things to be joyful about.  As hard and as deep as I dig I can't do it.  I try to constantly pray about them and not dwell on the pain and depression.  Somehow the depression wins over every time though.  

It's critical that you don't deny your depressed.  It's like any other disease or addition.  You have to own up to it and get help.  You have to keep fighting.  Sometimes I feel like I will be on antidepressants for the rest of my life.  I've tried to get off and it's just a nightmare.  If that's what it takes to keep on going I've accepted that.  I don't like it, but it is what it is.  

If your battling depression remember your not alone.  There is so many resources to help you.  It's important to fight that little voice telling you you can't beat it.  Go where you have to go even if your dreading it.  It's therapy and you don't know it.  Seek professional help.  If you don't like the first person you see, try another.  You may think it's not helping.  I still to this day think it's not helping, but don't want to know what it would be like if I wasn't going.

I've made some decisions on my medications choices working carefully with my doctor.  I'll tell you about that on my next post.  I know,  your thinking ...hum next month?  It won't be.  I'll will be home a lot more over the next month because of some of these changes I'm making.  I will be updating as well after I get started.  I have this small list of things I want to share.  It's not that I don't have things to write about.  It's about being comfortable sitting for a period of time with my computer.  Writing here is just like avoiding conversations with friends.  I have make myself open up and share.  

FYI; I'm slowly using up my GF food in my home.  After 3 months I haven't felt any better.  Last week end we celebrated my granddaughters 5th birthday and I have a piece of birthday cake and ice cream.  I haven't had anything like cake for months.  It had no effect on me at all.  As I've slowly added back in regular foods I haven't noticed any difference either.   I don't regret trying.  I baked and made some new recipes I probably never would have tried if not.  At least now I know.  Another wishful thinking.

Enjoy your Labor Day

"A" celebrating #5

AJ one happy baby


P on his first day of K4

Some movies we recently enjoyed you might want to see if you haven't

1) Silver Lining playbook
2) Noah
3) Three Days to Kill