Yep - I'm going there. It's time!
It's honesty time-
I want to share about something that I went through in the last few weeks.
IT'S THAT IMPORTANT TO ME
I want to share about something that I went through in the last few weeks.
IT'S THAT IMPORTANT TO ME
(This is a LONG ONE FOLKS-it took me about a week to write this as a result)
Here is a descriptive run-down of how I felt during this episode: : miserable, discouraged, overwhelmed, desperate, horribly filled with pain, suffering & sadly, true hopelessness.
Here is a descriptive run-down of how I felt during this episode: : miserable, discouraged, overwhelmed, desperate, horribly filled with pain, suffering & sadly, true hopelessness.
For clarification sake, I will try to write about what the last few weeks encompassed
As I stated in my last post, as the weather started to change, my RD (Rheumatoid Disease) and A.I.S. (autoimmune shit) started to complain and rebel so I instinctively started bracing the body & mind for the upcoming changes.
What I didn't mention was that in addition to bracing myself, I had tried to deny, avoid and wish away the ever increasing symptoms flare I was having (for the last month)
After much internal bitching,moaning, & general arguing with myself, I relented with an honest talk to my Rheum doc (Dr. Smiley), & Rheum doc's Physician Assistant.
(Incidentally, I call her Kick-ass P.A- She is really amazing)
Since my current infusion dosing schedule had found its way to monthly visits already, this meant that my options were becoming a bit more limited.
The game plan that Dr. Smiley, Kick-ass P.A., and I came up with was as follows:
The Rheum's increased my biologic med (Remicade) dosage for a few months to see where that landed me. They referred me back to my pain management doc for a re-evaluation of my pain mgmt. meds. I was also
(Like the shoulders, hands/fingers, and knees weren't enough-SHIT)
So moving ahead -I had the first of the increased Remicade dosage Infusions. In the meantime, like a good patient, I also made the other two appts. I decided to schedule both appts. after I had the second month of the new Remicade dosage thinking that all some of the newer symptoms would have gotten better.
Now generally, the first week after I get my infusion is usually when I am at my overall best (my honeymoon week).
This last infusion, this was NOT the case - I found myself heading uncontrollably down a really steep slope and ending up right smack in the middle of FLARE TOWN, USA.
Not my destination of choice!!!
Not my destination of choice!!!
At the end of that week, I was miserable enough & sucked it up again to call Kick-Ass P.A.
Kick-Ass P.A. with her incredible wisdom & charm, highly recommended a good solid course of my archenemy-
The Triple P Threat-"Pretentious Private Prednisone"
Needless to say,I talked her into we ended up settling on Triple P's, close but much more reasonable nephew: Merciful Major MedroL dose pak
I had a few days on Major Medrol, when I was scheduled to see my pain management doc.
(This is where the plot thickens)
***HEADS UP-CONTROVERSIAL DISCUSSION AHEAD***
Knowing that I was overdue to discuss the state of my current pain medications with the pain doc, I made sure to have all my ducks in a row for the appt. I had a review of where things were with my A.I.S. treatment, my recent labs, films etc., and a review of what I was currently on/how long/how much, etc.
Let me say, that I find discussing my pain meds with the doc at best, slightly uncomfortable and at worst, highly anxiety producing and worrisome.
This is largely due to the fact that, (due to medical circumstances outside of my control) I have been on long term opioid therapy for about 2.5 yrs with good pain control.
Having said that, I feel the need to follow that up by also telling you that:
I have been on the same medication at the same dosage for that entire 2.5 yrs.
The exceptions to that have been the times I passed a kidney stone-OUCH & a couple minor outpatient surgeries that required the prescribed short-term post-surgical pain meds.
In my appt. with pain doc, I discussed all my latest info, and brought him up to date with my current medical problems and status. I felt it was an appropriate time to discuss a possible slight increase in my daily medication patch as the dose that I was on, was not currently helping as much as it had been, which was negatively impacting my activities of daily living.
I explained my concerns and asked pain doc about a possible slight med increase.
Pain doc explained to me that he felt I had developed "tolerance" to the medication and as such, increasing it would not in his opinion be the right course of treatment. He stated that increasing it would only help for a very short period of time which would quickly be followed by an "increased tolerance" to that med. and I would be in the same situation again.
He suggested that it was time switch my medication to another opiate to break the "tolerance" cycle.
Having my nursing background and also being a long time patient, has given me the opportunity to learn, and research about all the medications I am on.
As such, I was quite familiar with "the tolerance" situation that happens with many meds that pain doc discussed. I trusted that he was correct in his assessment and when he suggested switching me to a different long acting oral medication, I agreed.
I did question him about the prescribed starting dosage of the new med because it seemed to me that dosage he started me on, was lower than I would have expected. He assured me that the amount he was prescribing would be adequate. I took his word for this.
After I turned in my meds & pain doc's nurse removed the current pain patch I was wearing, the new script was written and given to me. Following this appt., I went directly to my designated pharmacy and filled the new prescription.
I started on the new med, taking it twice a day - that 1st dose being Monday morning.
Monday Am & PM go by and my pain is still pretty bad but I figured it would take at least a solid 24-36 hrs. before I noticed any significant relief.
Monday night's sleep was not great and Tuesday morning it seemed like my pain was getting worse. I took my AM dose of the med, and started to get a bit of relief. I had another docs appt. that afternoon, so I got myself ready and eventually headed out. About 4 hrs after my AM dose, and on my way to my appt. I started feeling really bad. I was sweaty, shaky, nauseated and most importantly the pain was getting really bad. I felt bad enough overall, that mid-trip to my appt. I had to turn the car around, go home, & cancel my appt.
I felt something was definitely wrong with my new pain med and I put in a call to my pain docs office. I left a message for his nurse explaining my symptoms & about what was going on. I awaited a call back from the office for direction and in the meantime, took some nausea medication I had in the house and laid down to try and rest.
This ended up NOT being the case -
I spent the next 48 hrs feeling worse than I had felt in almost 2 years. Despite staying on the new med twice daily, I continued having horrendous withdrawal symptoms in addition to uncontrolled pain that had me essentially bed-ridden.
The new med allowed me about 3-4 hrs. of slight pain help followed by 6-8 hrs of absolutely nothing.
Pain doc had not prescribed or okay'd any breakthrough medication, and as such, I had little to no options to help offset how bad I was feeling. The best I could come up with was taking tylenol every 4 hrs in addition to the prescription nausea medication I had available.
By that Wednesday night, my husband was so concerned about me that he did not want me being alone the next day.
My mom was called & she graciously offered to come up to stay with me for the day.
(Gotta love MOMS!!!)
The game plan was for Mom to come up in the morning (Thurs.) & for a call to be made to pain doc's office again that day as soon as they opened to explain the situation.
Mom arrived Thursday morning and pain doc's office was called (8:30am) -a message was left with his nurse again explaining the extreme difficulty I was having & begging them to call me back.
By this time, I was a complete mess, vacillating between unsuccessful attempts at calm re-direction through relaxation to out & out just plain suffering & hysterics.
Thankfully, Mom was able to help get me through what I think was the worst 4-6 hrs. I have ever experienced - It was a very scary, dark & utterly hopeless place I pray to NEVER have to return to!
She was beyond helpful, incredible and supportive in ways I will never forget.
At some point in the midst of the morning- she convinced me to take a dose of Prednisone that I had in the house in the hopes that maybe it would take the edge off.
Finally at 1:30pm that afternoon, the pain doc's nurse called back to say that pain doc had agreed to put me back on my original pain med patch at the same dosage I had been on when this all started. I was suffering so badly at this point that I readily agreed.
I was then directed by pain docs nurse to bring in the rest of the new pain pills to the office where they would count, document, & destroy them. At that time, they would be able to give me a new script for the original pain patches. I was told that I had to be there to do all this, meaning I had to get dressed and have my mother bring me into the office. I was so anxious for any relief whatsoever that mom helped me get dressed, into the car and off to the office we went (35 mins. one way)
When we arrived at pain doc's office, I fully expected that pain doc would want to see me to evaluate the situation. Instead, pain doc's nurse called mom & I back into one of the exam rooms where she and another co-worker counted, documented and disposed of my pills, and she then gave me the script for my pain patches. That was it - we were sent on our way back home -no doc visit.
(which at that moment, was fine because it allowed us to get on the road to the pharmacy in a slightly quicker manner than I had anticipated)
Thankfully my wonderful CVS pharmacy had my meds in stock and the staff knew exactly how to work with the insurance company to make sure that the script was covered without issue.
I was able to get my patches filled and the first one put on by about 2:45pm that day.
(they take on average of about 4 hrs minimum to really begin working at their base level)
I think between having the Prednisone in my system and getting the patch back on board, finally helped bring my pain down to a nearly manageable place that evening.
Since this whole episode had left me utterly exhausted, second-guessing myself, and unsure of what to do, I decided to leave well enough alone with my pain mgmt. doc for the time being. Within a few days I was able to get my pain under better control however I found that even so, I seemed to be back where I had started before this whole thing went down in the first place.
I was still experiencing the newer foot/ankle/toe problems and pain.
A week went by and I happened to finally have the podiatry appt. that I had scheduled on Rheumy's recommendation. I figured it would be an in and out appt. where they would take x-rays, look at my feet and say...."Yep-you have RA in your feet/ankles/toes...here is a RX for orthotics, etc"
Instead I watched as the podiatrist carefully checked out my x-rays, looked at my feet/ankles/toes on both feet & then hone in on a small spot on the top of my right foot below my big toe.
"She said I am going to press here -so let me know if this hurts you at all"
Not thinking much of this, I watched as she pressed down, at which point a shooting pain went through my foot and I almost came off the exam table.
Then I heard her say the following..."Well, it definitely looks as if you have a stress fracture of the 2nd metatarsal. (she went on to explain all about stress fractures) "You will need to try and keep off of it, elevate it...etc." "I will have the nurse wrap it and put on a walking shoe which you will need to wear for about a month until you see me again."
WTF???? A fracture in my right foot?
Yep a stress fracture which probably happened over the last month while I was trying to improve my overall state of health by slowly increasing my activity level. FIGURES!!!
The other thing, ironically enough, that I found out from the podiatrists was that I had a small break in the big toe of my left foot.
So in the end - there was/is a reason I was having the new increased pain along with the RA flare - I had some bone fractures, which I am sure you can understand are at times, very painful.
In all honesty, I do not believe today that I had developed tolerance to the pain patch I was on.
I believe I developed significant break-through pain that came as a result of the bad flare I was having + the fractures I had in my feet.
Here are a few things that became abundantly clear after going through this situation:
I feel strongly that because of the controversy regarding prescription opioid abuse, honest chronic pain patients are being stigmatized and are definitely suffering a bit more each day.
I feel that the good intentioned fight to help eliminate diversion and abuse, has caused a tightrope of laws for each and every pain management physician to try and navigate with the real fear of losing their license and therefore, livelihood.
I feel that as a pain management patient, I have had my right to have my pain treated adequately, not only significantly impaired but at times, taken away. I have also lost some of the privacy regarding my pain management plan of care as well.
I feel my dignity is quite often compromised when I see a health care professional and identify as a chronic pain management patient.
I also feel as a chronic pain patient, that I am more apt to be negatively challenged, questioned and disbelieved, when I present with new pain symptoms or an increase in my regular symptoms regardless of what testing may show.
Those are just a few of the handful of feelings I have regarding this issue and for the sake of this blog post, I will wrap this up here.
______________________________________________________________
In the end, I decided to share my whole story out because it is just one example of what I now know is unfortunately playing out daily in the chronic pain management community.
The Triple P Threat-"Pretentious Private Prednisone"
Needless to say,
I had a few days on Major Medrol, when I was scheduled to see my pain management doc.
(This is where the plot thickens)
***HEADS UP-CONTROVERSIAL DISCUSSION AHEAD***
Knowing that I was overdue to discuss the state of my current pain medications with the pain doc, I made sure to have all my ducks in a row for the appt. I had a review of where things were with my A.I.S. treatment, my recent labs, films etc., and a review of what I was currently on/how long/how much, etc.
Let me say, that I find discussing my pain meds with the doc at best, slightly uncomfortable and at worst, highly anxiety producing and worrisome.
This is largely due to the fact that, (due to medical circumstances outside of my control) I have been on long term opioid therapy for about 2.5 yrs with good pain control.
Having said that, I feel the need to follow that up by also telling you that:
I have been on the same medication at the same dosage for that entire 2.5 yrs.
The exceptions to that have been the times I passed a kidney stone-OUCH & a couple minor outpatient surgeries that required the prescribed short-term post-surgical pain meds.
In my appt. with pain doc, I discussed all my latest info, and brought him up to date with my current medical problems and status. I felt it was an appropriate time to discuss a possible slight increase in my daily medication patch as the dose that I was on, was not currently helping as much as it had been, which was negatively impacting my activities of daily living.
I explained my concerns and asked pain doc about a possible slight med increase.
Pain doc explained to me that he felt I had developed "tolerance" to the medication and as such, increasing it would not in his opinion be the right course of treatment. He stated that increasing it would only help for a very short period of time which would quickly be followed by an "increased tolerance" to that med. and I would be in the same situation again.
He suggested that it was time switch my medication to another opiate to break the "tolerance" cycle.
Having my nursing background and also being a long time patient, has given me the opportunity to learn, and research about all the medications I am on.
As such, I was quite familiar with "the tolerance" situation that happens with many meds that pain doc discussed. I trusted that he was correct in his assessment and when he suggested switching me to a different long acting oral medication, I agreed.
I did question him about the prescribed starting dosage of the new med because it seemed to me that dosage he started me on, was lower than I would have expected. He assured me that the amount he was prescribing would be adequate. I took his word for this.
After I turned in my meds & pain doc's nurse removed the current pain patch I was wearing, the new script was written and given to me. Following this appt., I went directly to my designated pharmacy and filled the new prescription.
I started on the new med, taking it twice a day - that 1st dose being Monday morning.
Monday Am & PM go by and my pain is still pretty bad but I figured it would take at least a solid 24-36 hrs. before I noticed any significant relief.
Monday night's sleep was not great and Tuesday morning it seemed like my pain was getting worse. I took my AM dose of the med, and started to get a bit of relief. I had another docs appt. that afternoon, so I got myself ready and eventually headed out. About 4 hrs after my AM dose, and on my way to my appt. I started feeling really bad. I was sweaty, shaky, nauseated and most importantly the pain was getting really bad. I felt bad enough overall, that mid-trip to my appt. I had to turn the car around, go home, & cancel my appt.
I felt something was definitely wrong with my new pain med and I put in a call to my pain docs office. I left a message for his nurse explaining my symptoms & about what was going on. I awaited a call back from the office for direction and in the meantime, took some nausea medication I had in the house and laid down to try and rest.
A bit later, the nurse from pain doc's office returned my call and related the following to me: "Pain doc says that the medication from your patch should not be out of your system yet and as a result you should not be having these problems. He wants you to give it a few days and if it is still problematic at that time, call the office back then"As you might imagine, I was none too pleased to hear this information from the nurse, however I decided to trust what the pain doc had relayed to me. I continued to feel really awful but kept hoping in the back of my mind that given some time, my symptoms would ease and that the new medication would kick in to help me feel better.
This ended up NOT being the case -
I spent the next 48 hrs feeling worse than I had felt in almost 2 years. Despite staying on the new med twice daily, I continued having horrendous withdrawal symptoms in addition to uncontrolled pain that had me essentially bed-ridden.
The new med allowed me about 3-4 hrs. of slight pain help followed by 6-8 hrs of absolutely nothing.
Pain doc had not prescribed or okay'd any breakthrough medication, and as such, I had little to no options to help offset how bad I was feeling. The best I could come up with was taking tylenol every 4 hrs in addition to the prescription nausea medication I had available.
By that Wednesday night, my husband was so concerned about me that he did not want me being alone the next day.
My mom was called & she graciously offered to come up to stay with me for the day.
(Gotta love MOMS!!!)
The game plan was for Mom to come up in the morning (Thurs.) & for a call to be made to pain doc's office again that day as soon as they opened to explain the situation.
Mom arrived Thursday morning and pain doc's office was called (8:30am) -a message was left with his nurse again explaining the extreme difficulty I was having & begging them to call me back.
By this time, I was a complete mess, vacillating between unsuccessful attempts at calm re-direction through relaxation to out & out just plain suffering & hysterics.
Thankfully, Mom was able to help get me through what I think was the worst 4-6 hrs. I have ever experienced - It was a very scary, dark & utterly hopeless place I pray to NEVER have to return to!
She was beyond helpful, incredible and supportive in ways I will never forget.
At some point in the midst of the morning- she convinced me to take a dose of Prednisone that I had in the house in the hopes that maybe it would take the edge off.
Finally at 1:30pm that afternoon, the pain doc's nurse called back to say that pain doc had agreed to put me back on my original pain med patch at the same dosage I had been on when this all started. I was suffering so badly at this point that I readily agreed.
I was then directed by pain docs nurse to bring in the rest of the new pain pills to the office where they would count, document, & destroy them. At that time, they would be able to give me a new script for the original pain patches. I was told that I had to be there to do all this, meaning I had to get dressed and have my mother bring me into the office. I was so anxious for any relief whatsoever that mom helped me get dressed, into the car and off to the office we went (35 mins. one way)
When we arrived at pain doc's office, I fully expected that pain doc would want to see me to evaluate the situation. Instead, pain doc's nurse called mom & I back into one of the exam rooms where she and another co-worker counted, documented and disposed of my pills, and she then gave me the script for my pain patches. That was it - we were sent on our way back home -no doc visit.
(which at that moment, was fine because it allowed us to get on the road to the pharmacy in a slightly quicker manner than I had anticipated)
Thankfully my wonderful CVS pharmacy had my meds in stock and the staff knew exactly how to work with the insurance company to make sure that the script was covered without issue.
I was able to get my patches filled and the first one put on by about 2:45pm that day.
(they take on average of about 4 hrs minimum to really begin working at their base level)
I think between having the Prednisone in my system and getting the patch back on board, finally helped bring my pain down to a nearly manageable place that evening.
Since this whole episode had left me utterly exhausted, second-guessing myself, and unsure of what to do, I decided to leave well enough alone with my pain mgmt. doc for the time being. Within a few days I was able to get my pain under better control however I found that even so, I seemed to be back where I had started before this whole thing went down in the first place.
I was still experiencing the newer foot/ankle/toe problems and pain.
A week went by and I happened to finally have the podiatry appt. that I had scheduled on Rheumy's recommendation. I figured it would be an in and out appt. where they would take x-rays, look at my feet and say...."Yep-you have RA in your feet/ankles/toes...here is a RX for orthotics, etc"
Instead I watched as the podiatrist carefully checked out my x-rays, looked at my feet/ankles/toes on both feet & then hone in on a small spot on the top of my right foot below my big toe.
"She said I am going to press here -so let me know if this hurts you at all"
Not thinking much of this, I watched as she pressed down, at which point a shooting pain went through my foot and I almost came off the exam table.
Then I heard her say the following..."Well, it definitely looks as if you have a stress fracture of the 2nd metatarsal. (she went on to explain all about stress fractures) "You will need to try and keep off of it, elevate it...etc." "I will have the nurse wrap it and put on a walking shoe which you will need to wear for about a month until you see me again."
Yep a stress fracture which probably happened over the last month while I was trying to improve my overall state of health by slowly increasing my activity level. FIGURES!!!
The other thing, ironically enough, that I found out from the podiatrists was that I had a small break in the big toe of my left foot.
So in the end - there was/is a reason I was having the new increased pain along with the RA flare - I had some bone fractures, which I am sure you can understand are at times, very painful.
In all honesty, I do not believe today that I had developed tolerance to the pain patch I was on.
I believe I developed significant break-through pain that came as a result of the bad flare I was having + the fractures I had in my feet.
Here are a few things that became abundantly clear after going through this situation:
I feel strongly that because of the controversy regarding prescription opioid abuse, honest chronic pain patients are being stigmatized and are definitely suffering a bit more each day.
I feel that the good intentioned fight to help eliminate diversion and abuse, has caused a tightrope of laws for each and every pain management physician to try and navigate with the real fear of losing their license and therefore, livelihood.
I feel that as a pain management patient, I have had my right to have my pain treated adequately, not only significantly impaired but at times, taken away. I have also lost some of the privacy regarding my pain management plan of care as well.
I feel my dignity is quite often compromised when I see a health care professional and identify as a chronic pain management patient.
I also feel as a chronic pain patient, that I am more apt to be negatively challenged, questioned and disbelieved, when I present with new pain symptoms or an increase in my regular symptoms regardless of what testing may show.
Those are just a few of the handful of feelings I have regarding this issue and for the sake of this blog post, I will wrap this up here.
______________________________________________________________
In the end, I decided to share my whole story out because it is just one example of what I now know is unfortunately playing out daily in the chronic pain management community.
I share in the hopes that maybe other people who are dealing with long term painful medical issues that require chronic pain management may not feel so alone in their experiences and also in the hopes that by putting this out there - maybe it will be one step in the right direction to helping to find better solutions to this problem.
