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Posts tagged ‘hidden illness’

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.

Thank You, St. Jude

Jude, also known as Judas Thaddaeus, was one of the Twelve Apostles of Jesus.

He preached the Gospel with great passion, often in the most difficult circumstances. Through the power of the Holy Spirit, he made profound differences in people’s lives as he offered them the Word of God.

The Gospel tells us that St. Jude was a brother of St. James the Less, also one of the Apostles. They are described in Matthew as the “brethren” of Jesus, probably cousins.

St-Jude-9-205x300St. Jude is traditionally depicted carrying the image of Jesus in his hand. This recalls oneof his miracles during his work spreading the Word of God.
King Abagar of Edessa asked Jesus to cure him of leprosy and sent an artist to bring him a drawing of Jesus. Impressed with Abagar’s great faith, Jesus pressed His face on a cloth, leaving the image of His face on it. He gave the cloth to St. Jude, who took the image to Abagar and cured him.

In the Catholic Church, St. Jude is the Patron Saint of Hope and impossible causes. Those who are in despair or distraught over finances or other circumstance in life are encouraged to ask St. Jude to pray for them.

Like so many times in the past, I can be too stubborn for my own good! LOL  I finally came to my senses when we were in nasty financial situation. My husband, who is self-employed, did not have work lined up and the monthly bills looming. (I am still battling for my disability, of course! At least a Hearing date has been set!!)

I asked St. Jude to pray for our financial situation.  As soon as I finished speaking to him, I heard my husband answer his phone.  He was headed out the door for a job.  The work has continued and is continuing for him.  We will be able to pay our bills this month thanks to the prayers said on our behalf by St. Jude!

Just as our friends and family pray for us, the Saints are there to speak to and to ask for their prayers as well! I now thank St. Jude each day before asking for his continued prayers.

The Brain on Fibro

Those of us with Fibromyalgia, Chronic Pain Disorder, Neuralgia and the like are dealt quite a handful of symptoms.  The quantity of symptoms as well as the intensity vary from person to person.  Although our conditions manifest differently, we can each relate having experienced the intense “Fibro Brain”…

Examples of “Fibro Brain” or “Brain Fog” that I have experienced:

  • Forgetting what I was just told.
  • Walking into a room, not remembering what I was doing.
  • Forgetting to brush my teeth.
  • Unable to find the dog brush, even though I thought for certain I put it away in the correct drawer.
  • Walking to the bathroom and forgetting what I needed to do.
  • Losing my phone…then finding I had placed it on the bed.
  • Sitting down and realizing that I need to brush my teeth.
  • Grabbing the lotion instead of the hair gel to put in my hair.
  • Using the conditioner as shampoo.
  • Using the shampoo as conditioner.
  • Unable to focus for even a few minutes.
  • Unable to watch a movie at a Theatre.
  • Forgetting the note on my phone when at the doctor.
  • Unable to find the batteries when staring right at them.
  • Looking for my glasses (when they are on).
  • Using the wrong name for items.
  • Standing at the shower entrance and not knowing what to do next.

Of course, these are just a few of the many frustrating things that we deal with when we have Brain Fog.  I find that the best thing to do is just smile or laugh…then do what you remember you needed to do!

 

Prayer Warriors

I understand that not everyone believes in God or in prayer; however, I am a strong believer.  There have just been things that I have experienced that could be explained no other way.

We often ask our friends and family to pray for us.  There is comfort in knowing that saint-jude-1606173_1280there are prayers being made on our behalf as we deal with crises, illnesses, chronic health conditions, sicknesses, surgeries, etc.  Yet we often sell ourselves short on all of the prayers sources available to us.

Being Catholic, there are so many Saints that are able to pray for us.  We do not pray to them; we ask them to pray for us…just like our friends and family.  Further we can always ask those dearly departed family and friends to pray for us as well.  Before you know it, there is a swell of prayers being raised to assist us in our time of need.

praying-hands-2535750_1280Of course, none of this takes place of our
personal prayers that are placed to our Heavenly Father through Jesus Christ.  There is a calming influence as we “unload” confess wrong doings, express our concerns, pains, sadness…as well as all that we are thankful for.

As we express ourselves, we are provided the opportunity to send up a “thank you” for all of those that have said prayers for us…and ask for Heavenly Father’s blessings for them also!

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!

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