Embracing life with chronic pain.

Posts tagged ‘Neuralgia’

Laser Focus

Beware of the steady focus on pain alone

For pain is not the only symptom we battle

Yet pain’s voice can be the loudest

Blaring over all others…

Or worse yet, swallowing them into itself

The headache, the abdominal cramps, the stabbing in the feet

Forced to feed into the great voice called Pain…

Those with softer voices yet carrying horrifying weapons of their own

Like bloating, muscle spasms, brain fog, blurry vision, burning sensations

Are carried away on pain’s current, and its need to be in the forefront…

We must remember each one of our conditions

For each one carries its own set of symptoms

Oftentimes overlapping thus covering up the condition responsible…

This masking and blurring, often made worse by our medications

Further weakens the voices the need to be heard and understood

To better assist us in dealing with what condition is truly at the front…

While remembering that each day, each moment

We have no control…none whatsoever…except how we deal with the voices

Attempting to listen harder so that we might better strike at the source…

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Completely Unprepared

No matter our chronic condition/illness, our lives and the lives of those around us are forever altered.  We are stressed to our breaking point. The emotional toll overwhelms. We are in the midst of the most intense storm of our life.

We are tested at what feels to be beyond our limits as we battle our way through the health care system, working with our doctors to find some sort of relief to allow us to have a life of some kind…our loved ones and those close to us witness this first hand.

We embark on a new journey that is dictated by our bodies…grieving who we were and had hoped to be. We struggle to adapt…to accept the fact that we might be home bound, unable to drive, barely able to maintain good hygiene…yet we do.

Like me, you might have to fight for SS Disability.  Even with the assistance of an advocate/lawyer, this can be an arduous task.  My route went through denials…to a hearing…taking 26 months to finally have the Judge rule in my favor.  All the while, watching our resources dwindle to nothing.

I am thankful to be at this last step…awaiting the formal notification that will verify the monthly payment and solidify medical coverage.  Yet I am bereft of emotion…feeling hollow, raw…an empty shell…praying for this wave to settle quickly…knowing that this journey is far from over.

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

The Fallacy of the Pain Scale

I am sure you recognize this graphic. We see this image in one of its various formats eachPain scale chart vertical time we visit the doctor.  For those of us “blessed” with chronic pain, it is a mute point.

I was ridiculed by the ALJ during my hearing yesterday because I have consistently been using the number 10 to describe my pain WITH medications.

Now let me attempt to describe this Pain Scale through the eyes of someone who is homebound and in constant pain.

Many years ago, a wise nurse tried to help me interpret my pain to be placed on this scale.  She simply said that in my situation, if I am noticing pain/discomfort that I am to respond with a 6.  If my day-to-day life is completely off kilter, I should respond with a 10.

Fast forward to the present. The ALJ’s understanding is that a “10” means you must be in the hospital.  I can hear the smirking of those with chronic pain. Our medical team is all ready doing everything possible to try to improve our quality of life…oftentimes, that means to bring pain within a tolerable range…like a 7-8! Reality check!  All they could do is attempt to overwhelm my system with medications that I cannot tolerate!  My combination of diagnoses do not have a definitive origin which has caused much frustration to my doctors and specialists.

I could hear the condescending tone when the ALJ responded to my description of Polyarthralgia.  He asked about Lupus, Rheumatoid Arthritis, etc.  All have been ruled out.  My set of diagnoses: Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, Somatic Symptom Disorder, Pelvic Floor Syndrome, Neuralgia, Postherpetic Neuralgia, Paresthesia, PTSD, IBS-D, Colostomy; do not fit the norm.  My issues have been “unique” making my “special” (terms that I have heard so many times).  These are diagnoses that you are assigned when you do not test positive for something!

Why have I been answering “10” “Unimaginable/Unspeakable?  Let’s see…just a few thoughts come to mind…I am homebound, can barely move from the bed to my recliner, find no position to help relieve symptoms, have thick Fibro Fog (brain fog), have difficulty completing a sentence, experience Flares on a regular basis (riding in car to doctor appointment will set me back for days), cannot concentrate…these diagnoses have completely robbed me of a “normal” life.  How do you describe to an outsider the reality of being a prisoner within your own body that is complete with its own torture chamber?

The other important point, is that I am in the process of weaning off of the medications as we continue to fine tune my pain pump.  Here again, the ALJ just wanted to focus on the ONE visit where my pain level was actually down to a 9! The reality of that number was the result of the pain pump being implanted and still taking ALL medication!  The entire reason we fought SO hard for the pain pump was to offer me the hope of true improvement…NOT masking it by overwhelming my system with drugs!

Week One — Cymbalta Free

What a whirlwind this past week has been! I have experienced electric shocks and electric zaps (a slow-motion form of the fast shocks), intense nausea, insomnia followed by sleeping all day –unable to wake, thick brain fog, inability to use the correct words when attempting to speak…not to mention the symptoms of my conditions thrown into the mix!!

Yesterday was the worst for pain that I have ever experienced. Yes…you read that right!  Mere words cannot relay the reality, yet I must try.  It is SO important that we know and absolutely believe that we are not alone in dealing with our hidden illnesses/conditions.

Yesterday brought tears to me eyes, truly crying because the pain was so extensive, so overbearing, so excruciating. Every single inch of my body was screaming at the top of its lungs: exaggerated pain from touch (clothing, slight breeze from the ceiling fan), Tinnitus volume turned up on high, stabbing and throbbing sensations coursing up and down my legs.  It was hard to differentiate from the symptoms of my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/Neuralgia/IBS-D/etc. and those produced by the absence of the Cymbalta.

This morning brought a huge sigh of relief!  There is a true difference in my body today.  I am experiencing the symptoms of my conditions…albeit they are still higher than my “normal”, would be categorized as a “Fibro Flare”…yet I feel that they will slowly settle…settle enough for my Pain Specialist to make further adjustments as needed to my pain pump.

What a rough ride! I am sure that I will still have some issues arise, however, it is uplifting to know that the first week following the last dosage is the most difficult. One step at a time…one day at a time.

 

Entering a New Reality

I was right when I thought this would be the hardest step in my new reality. I am referring to coming off of Cymbalta as part of clearing my body and having the pain pump take over.

We are very close to having the pump dialed in; this next adjustment may be the last one needed. I know the conversation with my pain specialist will be an interesting one as we discuss how my body is reacting.

Now for the truth of the reality of coming off of Cymbalta. I have described this as the most difficult step…at least I had anticipated it to be. Know that words cannot describe the intensity of the symptoms. The intensity of the brain fog is greatly amplified as well making thought and speech a huge frustration!  It is so hard to focus to interact with others…the wrong words are constantly used…don’t even think about driving.

Just a handful of the symptoms that have been exaggerated by the process: Brain Fog, burning, electric shocks, numbness, difficulty walking (legs do not obey), falling (or near-falling), nausea, abdominal cramping, IBS-D flaring, throbbing pains all over, stabbing sensations all over, tinnitus, light sensitivity, sound sensitivity, irritability, skin sensitivity to touch…

I have found that normal distractions or other tactics we use to help ignore symptoms do not work. It is truly a day-to-day battle to not lose my sanity! Even with all the questions we had asked and the additional research done on-line, I was truly not prepared for the amount of energy this process would take.

I am praying throughout the day and night for help make it through this step. There is light at the end of this I know. It will be such a relief in the months ahead having this medication cleared out of my body!

Thankfully today I have a break from the electric shocks and nausea…the balance of my symptoms are doing their best to make up for those that are not present!

Just remember, if you are considering coming off a medication like Cymbalta, take the time to research, to speak with your medical team, to share information with your spouse and children…then buckle up for a hellacious ride!

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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