Embracing life with chronic pain and illnesses.

Posts tagged ‘medication’

End of 2nd Week –Withdrawal

It is the end of the 2nd week of withdrawal from Cymbalta. As of yesterday into last night, it became very apparent that part of the nerve pain that I had not experienced in a long time was back with a vengeance. It is best described as needles and ice picks bombarding and attacking all over…especially my feet, hands, arms and legs.

This out of control nerve pain/sensations were definitely part of my original Fibromyalgia/Polyarthralgia/Chronic Pain Disorder symptoms. So, I made the decision that I would resume the Cymbalta today. It has become very apparent that I need to utilize Cymbalta along with my current opioids in order to attempt to reign in my symptoms and pain level.

This combination does NOT get rid of the pain nor all of the symptoms; however, it DOES take the edge off…calms them enough that I can perform gentle stretching during the day. It has been a couple of weeks since I have been able to do any stretching…I have been lucky to curl up in a hot bath…to use the heat to jumble and cause other sensations.

Unfortunately, I will now be paying the price for having taken baths…a path that I know…

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The Psyche Frustration

Webster has many definitions for the word Psyche:

“1. Classical Mythology: a personification of the soul, which in the form of a beautiful girl was loved by Eros.

  2. The human soul, spirit, or mind.

  3. Psychology, Psychoanalysis. The mental or psychological structure of a person, especially as a motive force.

  4. Neoplatonism. The second emanation of the One, regarded as a universal consciousness and as the animating principle of the world.

  5. A female given name.”

I am referencing the second and third definitions. The reference to our state of mind.

Those of us with chronic pain make many decisions in handling our pain…our conditions…one of which is the use of opioids for some sort of relief.

As we know, the choice to use the opioids is often a necessary…yet difficult one….

Once the decision is made, we are committed to monthly appointments with our pain specialist to obtain the necessary hand written prescription.  We discuss with our doctor how we are doing…how the medication is working…any differences we have felt over the past month…then our doctor may suggest an adjustment to our dosage…or perhaps a different opioid.

Our pain specialists know that we are not making things up…that we are not creating a delusion…that we are truly sick…that we are truly dealing with intense physical pain…pain that will never go away.

We learn to adapt our lives…we learn to utilize the tools that our medical team provides to us…along with the many changes that are forced upon us.

We endure showing our ID when picking up our medication. At first it feels so awkward and strange…it is almost as if we are doing something wrong….yet…we know that we are not doing anything wrong.  We are utilizing an important tool in our toolbox against our severe, chronic pain.

The one requirement that I am still trying to “come to grips” with is the required yearly appointment with the Psychiatrist or Clinical Psychologist.  Now, please do not take this wrong!  I truly appreciate the work they do….the serve an important role…and yes…they are a part of our medical team.

What frustrates me is the idea that someone thinks that I am making up my conditions in order to take a pill. Never in my wildest dreams would I ever consider making this up! I know that I am not alone in this. (The “someone” of course is the government….since our opioid medications are Federally regulated.)

I do not like having to go once a year…I do not like the way they sometimes try to misspeak our words…I do not like having to constantly repeat myself, over and over…relaying the same stories…

Yet…that is exactly what I will do at my next appointment. I will have my husband by my side…as he will wheel me in with my wheelchair.  Then I will do my best to focus through the Fibro Fog…

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Medication Update

After battling insurance and going back and forth with my pain specialist’s office, I was finally able to have the extended release of the medication my specialist wanted me on filled!

The entire ordeal was VERY exhausting…both mentally and physically!  The relief I felt once I held that bottle in my hands was overwhelming!

I am anxious to get the next few days under my belt to see how my body reacts to this new schedule.  As expected, I have been much more sleepy than normal…unable to keep eyes open…so curling up in bed for unscheduled naps.  This is how my body reacts the first 4-5 days…should then settle in to a better routine.

My pain specialist has also supplied additional information to insurance regarding the pain pump trial. That battle is taking quite some time. My insurance will change up come January so will be interesting to see if we have to start from zero or be able to resubmit the package they have assembled to the new insurance.

I am still amazed at how insurance dictates the treatments/therapies that the doctors/specialists prescribe for their patients!  How insurance can have such power with NO relationship with us, the patients, just blows me away!

Thankful for the moment though!  I am eager to see if we might have found the right combination of medications for me…at least until we can attempt the pain pump trial.

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Insurance – The Frustration!

As the chronically ill know too well, insurance is often SO very frustrating!

I spent today dealing with insurance…yes..the frustration. I refuse to allow insurance to dictate what care my specialists and/or doctor provide to me…their patient.  It is my specialists and my primary care doctor that are in the “trenches” with me…doing their best to help improve my quality of life.

I have said this before…I SO appreciate my specialists and primary doctor.  I feel truly blessed to have such wonderful medical providers.  I most appreciate their honesty.  They have each said that my case is “extremely unique….unusual….not really sure how they can help”…yet each one has and is doing his/her best to help me!

Then there is insurance.  Insurance TRULY is NOT on the side of the chronically ill…they have no concept on dealing with hidden illnesses and hidden conditions!  We do not “fit” into their wonderful “scripts” or their “books”.  They choose to have their “doctors” dictate to our doctors what is best for us.

YES!  A doctor who has NO IDEA about us!  One who has never met us…never seen our physical pain…our anguish…our tears…our frustration…our losses!

I for one am just fed up with this!  I am fed up with insurance dictating to my pain specialist that I my pain pump trial is denied because they do not have an MRI of my back! (Yes…you read correctly….they want an MRI of my back with the pinched nerve….SAY WHAT???  Where is pinched nerve in the diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-C, and Pelvic Floor Syndrome.) I am fed up with insurance saying that the new medicine that my pain specialist thinks will offer some relief must be “pre approved” by insurance…again…they must have the ultimate say if it is correct for me or not.  How would THEY know???

So I DID NOT take any of this lightly. I have been in contact with insurance…I was on the phone regarding why they refuse to allow the pain pump trial…I was on the phone with the “prescription drug” arm regarding the pre authorization.

I was told by the “prescription drug” arm that the medication should have been added back in January to my possible drug list…that insurance calls my “formulary list”.  Yeah….right…my specialists and/or doctor have a crystal ball!  They can look into the future and come up with what will work and will not work. YOU HAVE GOT TO BE KIDDING ME!

Needless to say…I FINALLY got a phone number for the actual insurance itself so that I can follow up with them in the near future.  I want to ask them WHY they think that THEY know better than MY specialists and/or doctor who are working WITH me on a regular basis!

All of this frustration TAKES ITS TOLL!  The stress exacerbates my conditions which are all ready flaring because of additional infection.  The amount of energy it takes is INCREDIBLE!

As an individual living with constant, severe, chronic pain, my extremely limited energy reserves are used to just get through the day…to have some time with my family….on a really good day…maybe even to have a friend come over to visit. Yet I feel it is important to stand up for myself…to stand up on behalf of ALL of us who have to expend energy that we DO NOT have to stand up for ourselves!!  To battle not only our illnesses/conditions but to battle our insurance companies for our needed medications and/or treatments.

This IS NOT how the insurance system should work. This is the UGLY side that most individuals will never have to deal with…most can just go along completely unaware. AND, most sadly of all, I worry for those who have chronic illness and do not have the ability, the stamina, or the determination to fight for what is best for him/her!

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The “Gift” of Pain Medication

I learned a valuable lesson today when I went to see my Pain Specialist.

I spoke with him about how I could barely stretch my new pain medication to seven hours…even though I was to be taking one every eight hours. I was open and frank…that by the seventh hour my body would be completely acting up…

It was truly hard to speak up like this…I like so many of us dealing with chronic health illnesses/conditions…I really did not want to be “captive” to a pain medication.  However, I felt SO liberated in speaking so frankly with my specialist!

We adjusted my pain med to one tablet every six hours to maintain a higher level of the medication in my system.  As we were discussing the adjustment, it really hit me…Pain Medication is a TOOL!  It is a very valuable tool for those of us living with extreme chronic pain…day in and day out.

I am SO thankful for a pain specialist that understands and supports me!  I am thankful for the time and effort…the research he has put in to find a pain medication that my system would better tolerate.

I know that I am not “giving” in…I am doing something positive…something that allows me to have a better sleeping pattern (3-4 hour solid chunks)…to be able to perform my gentle stretching daily…

I am learning that by taking advantage of this “tool” that I can better set up a routine…including scheduled naps during the day…interspersed with gentle stretching. Such a milestone!

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Spoke with Doctor Today

Well…my story is not yet over. The additional fluid build up that we anticipated was happening is not the case. CT Scan showed no additional fluid…just the small amount we knew was left.

I am once again causing my docs to scratch their heads. I could be dealing with residual nerve pain….the nerves continuing to fire even though situation is cleared up….will be seeing my other specialist…just waiting for appointment time. Docs are also talking…in the mean time, I have to take pain meds….am told that I must keep on top of the discomfort.

I am not good about taking drugs. I have always just focused my mind and selected to “ignore”…however, with current situation it is not in my best interest so I will pick up my meds in the morning and do as doc asked.

Hopefully adding the drug treatment until we can get what is going on truly diagnosed, will allow me to get some much needed rest. I know the reduced sleep is never good. Must sleep to allow the body to recover. What a crazy cycle our body’s can get into!

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