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Posts tagged ‘pain pump’

Update — Coming Off Cymbalta

Coming off Cymbalta even with doctor supervision and support has been a HUGE challenge!! Yet, it is nothing compared to the cold turkey symptoms, albeit there has been some overlap.

During the first two weeks with the reduced dosage, I have experienced electric shocks, intense brain fog, burning that is overwhelming, skin beyond overly sensitive–lightweight blouse causing stabbing sensations that reach to my core, and nausea…to name a few.  I have also had increased ringing in my ears making sleep a challenge!

I am now to the next step…which is one of the lower dose capsules every other day for two weeks. Should be interesting! LOL  Since there is so much going on in my body, I have continued to take the two short acting opioids.  It will definitely be an interesting conversation with the pain specialist this next Thursday!  My guess is we will up the dosage of the pump and then stay at that level for 3-4 weeks as we see how my body settles.

It is very exciting to think that I will be Cymbalta free by Labor Day weekend!

Now for the Difficult Step!

If you have been reading my blogs lately, I have been writing about my pain pump and the journey to get off oral medications.  (NOTE: I know that I will have some form of oral medication when all is said and done for flares not controlled by the pump.) I am making great success with my oral pain meds….am only using the short acting form during the day.

This past Friday, I started what will be the most difficult step…the process of getting off ofimages Cymbalta! I say this because of my “cold turkey” experience with this powerful medication; and, I know that, even with my doctors involved with this, I will most likely deal with some of those nasty symptoms.

My doctor reduced my dose from 60 mg to 30 mg.  I will be taking one pill per day for two weeks, then I will take one pill every other day for another two weeks.  After that, I will be Cymbalta free.  (At least, that is the plan!!!)

Today my body is a mess (legs stabbing/throbbing, upper right side is on burning, IBS-D is flaring –cramping and knots, extreme Fibro Fog, etc.) as it starts adjusting to a lower dose. Also doing my best to time my short acting pain med to offset the increased pain.

Week 11 with Pain Pump

Yesterday I went in for follow up with Pain Specialist.  He did another increase since I am struggling by 5:00 pm…it takes all my energy to not take an extended release Nucynta.  I really think we are getting close to having the usual, day-to-day pain dulled by the pain pump!  A huge change for sure!

By no means does this mean that my Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Neuralgia, etc. are cured.  The pain pump is doing its job…it is now helping with the pain!  Yeah!!

I am still dealing with the other “joys” that come along with my hidden conditions.  The best example being the fact that my legs have not been working for the past three days.  My legs are heavy, like I have sunk into that gooey mud up to my knees…all my effort is required to stand and shuffle (worse than Zombie walk) to the restroom and back.  For those of you with one or a combination of these hidden conditions/illnesses, you will understand!

I am so encouraged though!  We have made improvement to one of the toughest aspects of Fibromialgia/Chronic Pain Disorder/etc.; and, that is taking the edge off the horrific, 24/7, 365 day pain!

7 Weeks Post Op – Pain Pump

First of all, I want to remind everyone with one or a combination of our conditions, whether you are dealing with Fibromyalgia, Chronic Pain Disorder, Chronic Fatigue Syndrome, Neuralgia, etc. do NOT book more than one doctor appointment in a day…especially if one is with a Psychologist!

Our bodies before our illnesses/conditions is NOT the same.  We are now living after a diagnosis or combination of diagnoses.  My new rule of thumb…if I find myself thinking, “in the past” or “I used to” and then _______ (fill in the blank)….I will take that as a red flag and stop.  I am NOW in my NEW reality.  In this reality, there was no “in the past” or “I used to”.  I will also use this red flag to alert me that I must do something different…or something that might not make sense to someone else…like…NO multiple appointments unless it is absolutely necessary.  IF multiple appointments are required, someone else will drive; and, I will be in my wheel chair the entire time.

As you guessed by now, I had to drive.  Thankfully, my son was with me or this combination of appointments could have never happened!  He had to wheel me in my wheel chair after all! LOL

I digress…forgive me!

At 7 weeks now with the pain pump, I went to the pain specialist for another adjustment.  My extended release opioid had been cut in half…and with this adjustment our goal is to completely remove the extended release opioid.  I still have a fast acting 75 mg opioid that I am allowed to use twice a day if needed.

My incision areas are both healing very nicely!  I no longer have to use the brace and am allowed to move my upper body…limited bending.  Still not twisting or stretching…that will come soon!

My pain specialist and I are very excited at this point as we are now entering unchartered territory!!  For me…I have never been able to have the “edge” of the pain so well controlled.

Here I need to interject an important note.  Pain is just one piece of our complex health situation.  The extreme fatigue, electric shocks, brain fog, numbness, tingling, etc. are STILL present…will ALWAYS be present in some form or combination.

I am learning that I must now set strict time limits…plan my activities more carefully…provide myself more rest time.  My symptoms have been “artificially” changed.  I am SO thankful for this change….I am SO thankful for my pain specialist…for my pain pump….for this NEW leg of my journey.

5 Weeks Post Op!

I met with my pain specialist yesterday for another adjustment to the pain pump.  At the last appointment, he had increased the pain pump dosage by 30 percent.  (To put an amount on that…it would be a total of 2 micrograms of medication being released by the pump throughout the day. VERY minute compared to oral meds when you are taking a 100 milligram tablet!)  Today, he turned the pump up another 25 percent which places me on the lower end of what is considered “normal” dosage for the medication, Prialt, that I am using.

It will take 2 – 3 days for my body to completely adjust to the lower oral meds. So next week I will have a very good idea of how my body is responding to the new level from the pain pump.

It is exciting to see how well my body is healing.  The butterfly bandages came off my back last week, and today they came off my abdomen.  There is a slight puckering in the skin…however, both suture areas look so clean!  I do not feel the pump…and I cannot see it!  Too me that is amazing!!

I only need to use the brace when out and about. So I have started sleeping without it!  WOW!!!  It is amazing how “human” that makes me feel!!  It is also nice to be about the house without it on.  I have also started using my spandex T-shirt style bra/undershirts.  They provide a gentle hug to the upper body overall…giving me that extra assurance!

I am still under restrictions…no twisting, bending, stretching, lifting.  I anticipate these restrictions being lifted and/or modified at my next appointment.

This new path is amazing!  I know that I am now at the foot of an untraveled route…I will be embarking into the realm of the unknown…and with hope of truly being able to have my pain “under control”.  (Keeping in mind, that there will always be that potential flare…)

Awake?!?!

The beauty of the sky

The myriad of colors

The sounds of life abound

Even with the ever ringing in the ears…

It is as if I had been in a lifetime slumber

My senses forever dulled

Reaching upwards for help

While overwhelmed in quicksand…

Illness strips us of the familiar

We are thrust into the unknown

Each step taken as with a blindfold

Hands outstretched groping in darkness…

Our medical teams struggle

Conditions and illnesses so misunderstood

Further muddled by myriad of symptoms

Each of us so different from the other…

We search for answers

Yet try as we might

We find health elusive

Stripped from us and locked away

Secreted in the darkest, farthest corner…

We are tried and tested in ways indescribable

As words are a shallow testament

To the inner symptoms that abound

Forever changing and challenging…

 

Mindfulness

My Clinical Psychologist introduced me to a powerful tool to add to my arsenal. It is called “mindfulness”:

“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”

She walked me through a breathing exercise…complete focus on the breath itself…feeling the cooled air entering my nose…feeling it hit the back of the throat…feeling the rise in my chest as the air enters the lungs…feeling a second, subtle rise of the chest before exhaling…feeling the warmth of the air as it leaves the body.

I was then read a short story about washing dishes, from “The Miracle of Mindfulness”….I will share just one paragraph that sums up the idea of mindfulness very well…

“…If while washing dishes, we think only of the cup of tea that awaits us, thus hurrying to get the dishes out of the way as if they were a nuisance, then we are not ‘washing the dishes to wash the dishes.’ What’s more, we are not alive during the time we are washing the dishes. In fact we are completely incapable of realizing the miracle of life while standing at the sink. If we can’t wash the dishes, the chances are we won’t be able to drink our tea either. While drinking the cup of tea, we will only be thinking of other things, barely aware of the cup in our hands. Thus we are sucked away into the future — and we are incapable of actually living one minute of life.”

I applied this during my walk outside this morning. I took the time to not just see the sun…but to, really, “see” it! I felt its warmth…the rays touching my skin…the brightness shining…the reflection on the leaves. I felt the slight breeze…ever so gently twisting and turning the leaves in the trees…the slight movement of my shirt being pressed against my skin…the movement of the hairs on my arms…

It was truly amazing!! My focus was dramatically shifted…momentarily transported into the present time…fully embracing and experiencing what was happening around and to me.

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