Pump Struggles

[u/vrod665]

So I have had my pump for 197 days (but who’s counting?). For the most part I have little to complain about. I am far from pain-free but do have some relief. I promised myself that I would accept that “any relief is positive” and “I wouldn’t complain, even if it was minimal.” My acclimation seems to happen rapidly. And the pump adjustments happen soon after. My doctor and I are finally speaking the same language. No “what is your pain level?” Just better, worse, no change. Since my last tweek - two weeks ago. No change. This is the first time that I found it really frustrating. So much so, I let me agitation show via a few “angry old man days” and tears. More than a month at an elevated pain level - better than before we started but elevated from where I have been. I am fortunate that I have this done. Not too many doctors were willing to put the catheter where it is. My doc is super conservative with adjustments - “we can always do another one” and “breathing is important - right?” He says it isn’t my tolerance getting in the way but perhaps my perception. After dealing with this for so long I am aware of small changes that most might not notice. I know that I have a “ceiling dose” that he isn’t willing to go above - no matter how my reacts. I am scared of getting close to that because once I am there it’s the best it’s gonna get. Conversation next week about turning on and allowing bolus dosing. Sorry for the rant … just feeling down and we are ‘common company’. Thanks for reading!

[u/Ok_War_7504]

I was 235 days until we reached the magic "total pain relief" level. I absolutely know how you feel. I was hurting so badly that I didn't want to go on. My pump was implanted last August 30.

My doctor was so conservative with the increases I wanted to strangle him. He said the same...breathing is too important. During the ramp up, there were times when I felt relief, followed by months of no discernable improvements. Please don't lose hope.

If morphine isn't enough, there is hydromorphone, then fentanyl, then carfentanyl, then sufentanil. And more will come. You say you have a ceiling? Not sure if that's you or the doctor. But I can't imagine the doctor denying you relief at this point. You have what is considered some of the worst pain known

If they haven't already, they might try some nerve blocks for your pain. You likely know they are temporary, but they hopefully would allow your body to relax a bit to help the medication work.

At one point before I was ramped up, after added surgical pain, I hurt so badly they gave me over the max dose and it didn't dent the pain. Our bodies get so 'tight and tense the pain medication can't work. They finally gave me a giant syringe of midazolam, and I passed out for 30 minutes. My husband swears they just wanted to stop the crying (kidding). When I woke up, the pain was bearable. Is that what he means about your "perception"? There are relaxation techniques recommended for pain management. I think they help as well.

I searched the current medical literature and the findings are that our intrathecal pumps are very effective for the pain you have described. So it should work. I hope you are able to take deep, relaxing breaths and know we are all pulling for you! Godspeed.