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Posts tagged ‘multiple surgeries’

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!

Living “With” Fibromyalgia

Receiving the diagnosis of Fibromyalgia often takes a long time.  Every other illness/condition must be ruled out, or added to, our list of diagnoses.  After all, Fibro is rarely a lone diagnosis; it can be the primary or secondary, irregardless, the diagnosis of Fibro is a life changing event.

There are many ways that those with Fibro are treated…antidepressants, pain medications, alternative therapies (like acupuncture), chiropractic care, etc.  Some of us have extremely hypersensitive systems that greatly restrict what our medical team can prescribe or do for us.

Fibro does not manifest itself the same in each person; it can range from a slight inconvenience to overwhelming…meaning some can manage Fibro and continue with a normal life, whereas others are forced to quite jobs and become homebound.

There are 100 symptoms of Fibro.  Just as some people experience a handful of symptoms, others experience 25 – 50,  and still others will experience close to, if not reaching, all 100!  These symptoms do not hit all at once…the symptoms of Fibro can change on a daily, weekly, sometimes hourly basis.

When diagnosed with Fibro, we often fight our condition.  It is a challenge to learn how to deal with the symptoms, that can be overwhelming….fatigue, burning, numbness, tingling, brain fog, headache, stabbing, throbbing, cramping, muscle weakness, etc.

It also takes time to truly understand that Fibro is a condition that will not go away…there is no cure…the symptoms can improve and then flare at any given time.  Sometimes we can understand what we did to cause a flare, other times we can not make any sense of it.

We do eventually come to terms with our condition.  We learn to live with Fibro.  We accept the life changes it has forced us to make…we learn how to limit our activity and maximize rest in order to minimize our symptoms.  We see that we our definition of living has changed to adapt to our condition.

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.

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!

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!

The First Five Days –Pain Pump Surgery

The primary focus after the surgery to install the pain pump is to REST.  I cannot stress this enough! The discharge paper, the nurse, the doctor…all will emphasize the importance of rest. The first three days are important to form scar tissue that will help to further secure the catheter and the pain pump.

It does hurt…although it is different.  If you are like me, this will be the least invasive surgery you have had…no muscle or deep tissues involved. As my specialist described…he used a 2 1/2 inch incision in my abdomen to create a pocket under the skin for the pain pump…another 1 inch incision in the small of my back for the placement of the catheter. The catheter was inserted and fed along the intrathecal space along the spinal column to just above my shoulder blades…he wanted to maximize the delivery of the medication for my combination of pain. (On any given day could say 60 percent of pain is located above the waist and 40 percent below the waist….)

You are told to not twist, bend, lift over 3 pounds, put arms over head…these restrictions will be in place until I see doctor for the follow up (10 – 14 days after the surgery). Since my surgery was prior to Memorial Day Weekend, it will be Tuesday before that will get scheduled. I mention these restrictions now because the first three days I literally did nothing!

A dear friend had made arrangements for meals to be delivered to us from Thursday to Sunday…there were left overs for Wednesday. This was a HUGE blessing! If anyone volunteers to help…in any way…say YES! It helped me to completely relax…knowing that my husband and son would have good food in the house to eat.

My pain specialist had said that by Saturday (day four) that the abdominal pressure and the extreme tenderness of my back should be noticeably better. He was correct about that! My back is still sore but nearly as tender as it was. I also do not feel any pressure in my abdomen from the pump.

I have no idea how my new implant looks…wearing the binder and both incision areas are completely covered with dressings and tape.  The binding on the incisions themselves offering some additional support. Will review with doctor on Tuesday…still under the impression that all will remain as is until my first visit.

I did have an extreme headache…my specialist warned me about it…said it could last two to three days. The one good thing about the headache was it went away when I was lying down. That alone, kept me in bed with pillow under my legs for support! I drank as much water as I could to help flush my system….also was strongly encouraged to drink caffeinated drinks (which help with the headache).

Now on day five, the surgical pain has greatly improved. Getting up and down does still cause a slight grimace; however, it is much easier to shuffle to the bathroom and back to my chair….using my walker. NOTE: If you have the slightest need of walking support, make sure you have a walker available! I cannot stress enough how great of an aide this is! No worry of sudden movements…no fear of balance…just an awesome tool to navigate carefully around the house.

I am feeling very excited for this new journey! I will write more in regards to how my symptoms are impacted in the near future…right now, I am keeping my focus close at hand…

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