Embracing life with chronic pain and illnesses.

Posts tagged ‘Medtronic’

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!

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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.

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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!

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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.

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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…)

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3 1/2 Weeks Post Op

It is now 3 1/2 weeks post pain pump surgery! I have been amazed at how fast my body is healing. I have also been amazed at how quickly the swelling in my lower tummy went away. The butterfly bandages that the pain specialist placed over my surgical areas are still in place.  I have noticed just a slight loosening of a couple of them on my tummy.  No worries…supposed to let them fall off when they get loose.

I let my body dictate my actions. Let myself sleep in as long as I need….some mornings I am awake at 5…sometimes 6…I try to get up before 7.  I am making an effort to walk about the house a couple times a day…goal of 2-3 minutes…resting for an hour afterwards. A nap in the afternoon is still a must!  I find that I am sleeping for 2-3 hours…very solid and hard sleep.

I still have to give in and go to bed between 7:30 and 8 PM…to just lie down with pillow under my legs.  I take advantage of this quiet time to read or work a puzzle.  This down time has worked well to allow me to fall off into a good hard sleep.

We have definitely set what I think is the perfect balance of the pain pump and my current oral medication levels.  When I go back in (in about 1 1/2 weeks), my doctor will again increase the pain pump level so we can continue to cut back the oral meds.

This is such an exciting time! It is SO awesome to be working toward a goal…an achievable goal!  It is SO rare for those of us with chronic pain from Fibromyalgia or the like to actually be able to be in this situation!!

Now don’t get me wrong…I fully realize the path that is forming in front of me will be a long and arduous one.  I know it will be years to regain some muscle…as all muscle is gone for having been homebound for so long. Even with this realization, my excitement is not diminished!

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First Adjustment (Pain Pump)

At my first follow up appointment on Thursday, it was very difficult to know how much (percentage wise) the pain pump was working vs the pain medication vs the complete rest. I could tell that there was a change in my symptoms…for example, the intense stabbing in my upper back was gone replaced by dull ache.

Our conditions are hard to articulate…the fact that our symptoms (read this as types of pain being experienced — stabbing, dull, throbbing, ice pick, aching) are not the same from day to day! Just as soon as you being to expect the intense stabbing in your feet, your feet will ache instead and the stabbing has moved to your chest…not to mention all the other pain sensations all over your body.

By Friday night it was clear that the slight reduction in oral medication and the slightly more than conservative increase of the medication from the pain pump was not enough!

I have an appointment set for this coming Thursday morning…however, I will be calling my pain specialist Monday morning to let him know that we need to turn the pump up…much more aggressively!

This is to be expected! It is going to take time to get the pain pump dialed in to fully be able to do its job.  I do NOT expect to be pain free…I am just hoping we can get my pain level to a 6 or 7!

I am glad that I will be able to provide my doctor with more specific information in regards to how I am doing at the current levels…and, most importantly, I know that this is temporary! We will work through this!

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First Shower

When I got home and was able to enjoy my first shower since my pain pump surgery, I had a few things come to mind.

If you are lucky like me, you have a walk-in, handicap shower (complete with the extra support bars…inside and out…as well as a seat or bench and floor mat). If you do not, or have not purchased some safety items (like a seat and added handrails)….do so before attempting a shower!  Otherwise, you will need to have someone there to assist you.

Plan to take your time…there is no need to rush any step! And set a simple goal, like washing your hair or shaving your underarms (if applicable). Just the feel of the water is a huge boost for having only sponge baths for two or so weeks!!

Have your comfy clothes laid out to put on…and rest afterwards. A lot of energy is used in the shower…not to mention all the energy used going to the doctor appointment earlier in the day.

Don’t worry about any “finishing touches” (like lotion)…the only item I suggest is deodorant to complete the endeavor. For many of us, the dry skin can be driving you crazy!  Just remember…there will be time after a nap to put some lotion on your arms!

What a huge accomplishment for the day… now sit back and relax!

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Follow Up

This morning was my follow up appointment with my pain specialist for the pain pump surgery. I was very anxious for the appointment as he would be removing all the tape and bandages covering my tummy and back.

The short ride to town was hard…my lower back was hurting intensely and I could not have any pressure on it! So crazy…I had not felt that type of pain for a while…however, each of us knows how we can never predict where our pain will be!

We discussed the “improvement” in my pain…the absence of the sharp stabbing sensations…and spent time going over what steps we will be taking to achieve our ultimate goal.  First step is to reduce my long term opioid med by about 30 percent. He increased the output of my pain pump by about 20 percent. I will go back in to see him next Wednesday for another increase.

Our ultimate goal, is for the pain pump to handle my usual, every day pain…and having the short acting opioid for break through (flares) pain.

It is SO surreal right now! It has been so long in coming…something that my body is responding to that will help me get off the opioids and thus alleviate the side effects (the nasty constipation).

My specialist used a hand held device that had what could be likened to a hockey puck type attachment that I held against my clothing over the pain pump. The device receives information from my pump and also sends information to my pump.  Very cool! The initial adjustment was made before removing any of the tape and bandages.

We also had time to ask questions…so we talked about exactly where the catheter was placed into my spine and where the medication was being delivered to.  Basically, placed into my spine in the mid-back, and placed mid-shoulder blade for delivery…this maximizes body wide the medication without getting too much to my brain. (This placement was determined by my “normal” pain typically being 60 percent above the waist and 40 percent below the waist.)

I was assisted to sit on the exam table…and with many apologies, he started removing the tape and bandages. The first bandage to be removed was from the right side of my tummy where there pain pump is located. He was SO impressed with how well my body is healing! (This is a first for me…as I usually heal very slowly!) Absolutely no signs of any type of infection….very little bruising…very little swelling (and I mean little compared to how my tummy has swollen before after procedures)! He then removed the tape and bandage from my back. Again, he had the same comments! (My husband took a picture of my back so I could see…and I was amazed!)

The excitement in the room was palpable! My pain specialist and his nurse were smiling ear-to-ear! To have such a huge positive start on this new adventure, had us all super excited!

We will have several more visits before we get the pain pump fully dialed in…baby steps…although I should say “giant” baby steps! Each step is in the right direction…more reliance upon the pain pump and less reliance upon the oral opioids.

I am supposed to continue wearing the binder as additional support. If I am reclining, I can take it off. At this time, it is easiest to just wear it.

I was also told that I could take a shower!!!! It will be another 4 to 6 weeks before I will be allowed to take a bath or get into a swimming pool.

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Wow! Something “Normal”?!?!

Today is day 11 after pain pump surgery. I am amazed at my body in regards to its reaction to this surgery…it is the FIRST time that my body is responding like a “normal” body would!

I am writing in consideration of my most recent surgery only…the fact that the incision areas are itching…that I can get in and out of bed…that I can sit in my recliner…all is progressing as it should!

I am sure a huge part of this is the fact that I have been super conscious to do EXACTLY as I had discussed pre-surgery with my pain specialist. I allowed my body to dictate each and every day…not putting any pressure on myself to meet any type of goal. By letting go of any preconceived ideas or outcomes, I removed a major stressor.

I have not focused on symptoms…not considered the amount of time spent sleeping…not concerned about what day it is…

In letting everything go, my incision sites have been allowed to heal as they should! I am excited for my upcoming follow up appointment.  I am ready for this new adventure to begin.

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