A great WordPress.com site

Pain Pump Trial

After months of fighting my old insurance which ultimately would not approve a pain pump trial no matter what my pain specialist and I did, it took a change of insurance to open the door for the possibility.

I went through the psychologic assessment with a wonderful Clinical Psychologist. (An ordeal that I wrote about earlier.) I was anxious to see the finished report and, most of all, to find out if the trial had been approved.

At the end of last week, I received the phone call. I was approved for the pain pump trial!! I am SO excited! I will undergo the test at the end of next week. My pain specialist has determined that Prialt (ziconotide) will be the drug to be administered into the spinal column.

Per Aetna.com:

“Prialt (ziconotide intrathecal infusion) is a non‐opioid N‐type calcium channel blocker analgesic. It is a synthetic conopeptide derived from the venom of the piscivorous marine snail, Conus magus. Prialt (ziconotide intrathecal infusion) is a calcium channel blocker specific to the neuronal calcium channels that regulate synaptic transmission in nociceptive neurons.”

I was also given the good news that I will only have to remain for four hours of observation and follow up will be conducted via phone. My hubby and/or son will have to be with me for the next 24 hours. This in leu of an overnight stay at a hospital is so heartwarming! Will be nice to be home to compare how I can move about the house.

I am intrigued by this non-opioid option and anxious for the upcoming trial!

Hard Lesson Learned

Looking back on the past couple of weeks, my body and mind has been through a lot. Having experienced the withdrawal effects of Cymbalta, I can now say that there is definitely a positive side to it.

Dealing with the symptoms of going cold turkey, has brought forth an important topic to discuss with my primary doctor. I will discuss my experiences of the past two weeks. More importantly, I will be able to relate to her and my pain specialist what symptoms are helped by Cymbalta…the answer to a question that I could never really put my finger on…until now.

I am thankful for the intense nerve pain that the Cymbalta calms…that horrific feeling of charley horses, long needles and ice picks piercing my feet and hands…along with the overwhelming nerve pricks all over my body. It truly makes me appreciate my “normal” symptoms!

So yes…it is with a much better understanding that I embrace my day-to-day symptoms. I also better appreciate the combination of medications that my doctors have me on to better stabilize my symptoms.

My journey has been shifted…to a journey WITH pain…rather than OF pain.

I received the written report from the Clinical Psychologist I had seen. She did such a great job in summarizing and clearly demonstrating the impact my conditions. She also officially provided another important diagnosis…I have been diagnosed with Somatic Symptom Disorder with predominant pain, persistent, severe. This is a huge step in moving forward with the pain pump trial!

I was able to forward a copy of the report via fax to my advocate who has all ready submitted it to Social Security Disability. My pain specialist has all ready submitted to insurance with the request to authorize the trial. Most importantly, it has been approved!!! By Tuesday of next week, I should have all the final instructions…the procedure is penciled in for Thursday, February 24.

I am excited to again be on track! This will be a huge step…to see if a pain pump will be an option for me.

If you find yourself in the position of having psychological testing, remember that you do not have to take the long test on the computer. Those of us dealing with conditions that affect the use of our hands would benefit greatly from the “written” test. Be sure to stand up for yourself! I don’t want anyone else to go through the five day flare that the computer testing caused me. (I did advise my doctor of this; and, she was going to review with staff that there is an alternate format for the long test.)

It is inevitable during our battle with chronic pain that we face discouragement. After all, we are battling on so many fronts!

We find ourselves struggling with the guilt that our longterm illness/conditions cause…as we watch our finances depleted and debts grow…knowing that we are helpless to do anything about it!

You may be fighting for social security disability like I am…finding that each time we get close to scheduling a hearing…that the “backlog” has pushed our case out yet another two to four months…

Add another layer.. .that with insurance changes that placed me into forced withdrawal as I awaited my prescription to be approved…

I could go on and on…the important point is to understand that we we will have ups and downs…no matter how positive we try to be.  Remember that our projecting a positive front wears on us as well! Our limited “spoons” are often used before we can get out of our bedroom in the morning!

Allow yourself a time out…a day to sleep…a day to watch your favorite movies…the time will help you to “reset”. Our struggles will still be there but our spirit will have been strengthened.

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…

Second Week of Withdrawal

This second week has changed up the withdrawal symptoms! My body temperature is seriously out of whack…I mean…how can I be soaking in sweat and freezing at the same time? How is that possible? The cramping, twitching, stabbing, tearing in my feet and legs is like they have a mind of their own. The oversensitivity of my chest makes it SO hard to deal with the pressure of even the most light weight shirt.

I am thankful that I have a break in the nausea! And the emotional roller coaster appears to be letting up a touch…after a horrific morning yesterday! I am still not able to really focus on anything….my lack of focus is much more than Fibro Fog.

It is strange…and I am sure that it sounds almost impossible to an “outsider”…to someone who is not living with chronic health conditions….that we CAN tell the difference.  We can discern the symptoms that are caused by our conditions from those that are caused by the withdrawal…even though they are heaped on top of each other…jumbled together.  It can be hard to verbalize…to describe…

During this second week, I have been attempting to do more research…more review of Cymbalta. It is amazing to me at the lack of true testing…true review of what this drug actually does to our body! And seeing repeatedly, that the company did not conduct studies of withdrawal beyond the two week mark, is incredulous!

Our society is being brain washed into thinking that there is a magic pill or some secret cure for everything. The cold hard truth…the truth that those of us with the chronic conditions/illnesses know…is that there is NO magic pill…there is NO secret cure! We DO hope that more research will be done…that some day there will be better understanding, a better treatment.

We must work diligently with our medical teams…make the tough decisions with them and our families as we determine which treatments are the best for us. Each of us is unique…there is no “one size fits all”.

Now to continue my fight…to get through this withdrawal period…however long it will take…

Withdrawal!?!?!?!

I have been taking Cymbalta for about two years. It was the first medication that my body tolerated for my Fibromyalgia/Polyarthralgia. I credit it for helping me also deal with the intense emotions of coping with the sudden death of my sister.

I was nervous about the change in insurance, even though it was for the good. I am sure most of you can understand and relate. After all, we have our medical team in place as well as medication(s)…these come “under threat” any time our insurance changes. We never know for sure what prior authorizations will be required or if our specialists or primary doctor will be accepted.

My doctor and specialists were quickly approved…the only hiccups of course came with my medications. I was very impressed with how quickly my new insurance worked with my pain specialist to approve my opioid prescriptions. It seemed that all was under control…that is until it came to the refill of my prescription for Cymbalta. Needless to say, this “hiccup” has opened up a brand new chapter in my adventure with pain.

The timing? Couldn’t have been “better”…my last pill was taken on Friday…and I was not made aware of the preauthorization issue until Saturday. Thus began a journey I would have never dreamed of experiencing.

By Sunday evening, my body was feeling unlike anything I had ever experienced. Yes, I have dealt with almost every symptom of Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/Neuralgia/IBS-D/etc…electric shocks, nausea, headache, numbness, tingling, burning, chills, sleeplessness…however, this was different!

This is now day four of full fledged Cymbalta withdrawal! The electric shocks are more like a strobe light…with a gremlin manning the switch; the nausea is extreme; the irritability — I am biting my tongue a lot and apologizing; the body sweats are worse than any menopausal moment; the dizziness is incredible — very scary at times; the nightmares — well…we just won’t go there.

These withdrawal symptoms in combination with my “usual” symptoms are making my days MUCH more difficult than usual. I am very thankful for my supportive husband and son…thankful for the extra hugs…thankful for the extra attention from our dogs…

I have spent time reading and researching withdrawal…it has been a huge eye opener. I never would have imagined dealing with this! Yet, I am…so I want to make sure that others who are taking Cymbalta speak with their doctor. It is important to have a plan…sooner or later you may need to change meds or get off of it.

I am having to deal with this cold turkey. I am not going to pay the price for Cymbalta out of pocket…we can’t afford it. And now that I am this far into it, I am curious as to how my body will react with just the opioids…after speaking with my doctor’s office today…it will be some time before the preauthorization is approved.

 

Tag Cloud