On Monday November 6th I finally had the fentanyl removed from my pump. Now I’m back to what I had to begin with, sort of. The concentration of dilaudid, bupivocaine and Clonidine are the same as before the pain doctor started changing them around. However, the pump flow rate is so slow that I’m getting less of these medications than I was before the fentanyl was removed. I was getting fentanyl at the max for a pump and dilaudid 6.4 mg. Now the dilaudid is 5.5 mg. On Friday they are supposed to increase the flow rate by 20%. I’ve had dilaudid that started out higher than this over 17 years ago. But they are afraid I’ll overdose now even though I had more dilaudid on Monday morning than I did Monday evening. Figure that one out! I can’t.
The pain clinic just called to tell me to come in Friday morning instead of in the afternoon. The doctor won’t be there. They can not legally refill a pump without him there. I did my best to explain to the lady who called that I need more than just a 20% increase. Why?
For one thing I am having withdrawal symptoms. I’ve been having them since October 24th but with the change Monday they are much worse. My pain is a mixed bag of "tricks". I actually had less pain with the fentanyl removed. Tuesday and Wednesday my feet had almost quit hurting and so had my legs. My feet and toes had gotten to the point where I could not live long in that kind of pain. In fact, I hurt all over in a very bad way. With the fentanyl I became an emotional wreck and was very mad. Now I’m just mad about what’s happened. Lots of those pains are either gone or are much less. So when the new pump nurse told me that pump patients with fentanyl had less pain when the fentanyl dose was lowered was telling the truth. She said they don’t understand it. Neither do I but it’s true in my case. Thankfully most of the Adverse Reactions I was having have gone away.
Now it’s Thursday and things are worse than yesterday. Monday-Wednesday I had stayed in bed or else just watched TV. Today I felt so much better so I tried to do a few things around the house. I put in a load of laundry and cleaned the leftovers out of the frig. While the laundry was in the dryer I picked up a few things that were just out of place. Then I went to get the laundry out. As soon as I bent over all of the old AA and neuropathy pains seemed to hit me all at once. I staggered back into the den and collapsed in my LazyBoy. In fact, I passed out from pain. I didn’t think that was possible except maybe in a wreck or some severe injury. I’ve proven to myself that the people who list #10 on the pain scale as being unconscious from pain are right. The new pain scale my pain people are using lists #10 as "pain can not get any worse no matter what". Pain can always get worse. I proved that today too.
I need my pump medications back up to what they were before the changes started in April. For all practical purposes I have no pain control except through my oral narcotic. This is totally unacceptable. I won’t know if my AA is getting wo
rse like my neurologist says or if the increase in pain is due to a combination of a failing pump and lowered narcotic at the same time mixed in with a narcotic I can not use in any form, until my pump is back up to speed. I simply know that I’ve been in increasing pain and disability for many months when it should not have happened at all.
I can not sit any longer. I’ll fill y’all in on what happens next.
Wanda V.
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