The most difficult thing we learn with chronic illness/conditions is to listen to our body. It does not happen overnight…it takes time…and going through the cycles…then one day you awake to find yourself recognizing the pattern.
I have finally recognized not just one…but several patterns. The most challenging to me emotionally is the following pattern: long lasting flare (3-4 weeks); severe bladder infection; extreme fatigue; head cold; extreme fatigue; back to my “normal” — resulting in a cycle that can last a couple of months. Another pattern: flare (1-2 days); extreme fatigue; back to my “normal” — a cycle that will last 1 to 1 1/2 weeks.
Being able to recognize what is happening and what will possibly (or probably) happen next, can allow us to shorten the cycle. No, not always, but it does some times. At the very least, it can calm our minds and lessen our feeling of guilt as we give ourselves permission to rest…take a nap…ask our spouse to bring home pizza…allow a friend to bring over a meal.
It is also important to verbalize what is going on to our immediate family members. I have found this helps our son a great deal! He is reassured and very supportive when I open up…let him understand what is going on and that it is temporary.
Don’t get me wrong, it is still frustrating…we can still wrestle with guilt…as we lay low…allowing our body to rest…using whatever treatments work for us (hot baths, hot tub, sauna, heating pad, etc.).
Take your time…listen to your body…and, most importantly, be patient with yourself!
2017 has proven to be a rough year so far! The arctic front that came through almost two months ago wreaked havoc on me resulting in a nasty flare. Then with the change of insurance, there were challenges with getting Cymbalta approved…leaving me with the experience of going cold turkey…two weeks of intense withdrawal symptoms on top of the Fibromyalgia symptoms. This followed by a severe bladder infection.
I did have a bright spot! Insurance had said yes to the pain pump…so I was looking forward to a pain pump trial at the end of this week. That is, until this morning.
I received a call from my pain specialist’s office….expecting it to be the final instructions prior to the trial. Unfortunately, I was to receive the news that insurance had approved the pain pump….but they denied the medication. What?!?!?!? Yes…the medication was denied.
My specialist’s office is approaching different manufacturers to attempt to find assistance for me so that we could go forward with the trial….after all, you have to be able to get the medication in order for the pain pump to be useful! LOL
Needless to say, it was another sinking moment. That too familiar, wind out of the sails feeling…it really does seem that for each step forward I am taking two steps backward.
My faith is strong. I know that if I am meant to have this opportunity the pieces will eventually fall into place! For the time being, I will appreciate the medications that I am able to take.
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.
“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!
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.
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…