Connect
← Return to Severe chronic pain and Intrathecal pain pump
Discussion
Severe chronic pain and Intrathecal pain pump
Chronic Pain | Last Active: Mar 24 9:25am | Replies (60)Comment receiving replies
@alexandercrps Sounds like you've been through a lot and have gained a lot of insights. I, like many here, have been on a ten year pain journey. Pain was well managed up to 2021 when my SCS paddle shorted out. All my pain came flooding back, even with the meds I was on. So, in 2023 I had my trials of the pain pump. Both were done by injection. The first was done with morphine...no help, just a lot of vomiting about eight hours later. Two weeks later the second trial was done...hydromorphone dropped my pain from a seven down to about a two.
I have read of trials being done with externally mounted, temporary pumps which are worn for several days. I wish I could have had this type of trial. Instead this massive amount (4 mg) was shot into my spinal fluid. Unfortunately, when I received the permanent implant, they started very low(I haven't been able to find out how much). Here I am, three years later with exactly one day of relief. I just had my output raised to about 3.5 mg/24 hrs. with six boluses. I gave myself everything yesterday... no pain relief. Now, I had noticed that several days ago, the full dosage plus all boluses dropped my pain down to about a four.
Very odd and discouraging. I know that there are some here with pain pumps with a daily output of 6+ and 7+ mg/24 hours and get pain relief. I am afraid that my PM doc won't boost my output anymore. He said that higher concentrations can lead to granulomas on the catheter tip. All I know is that I am willing to go higher if I can get some pain relief and reclaim some quality of life. I will welcome any advice from my fellow pump users.
Replies to "@alexandercrps Sounds like you've been through a lot and have gained a lot of insights. I,..."
Connect
@heisenberg34 Hey and thanks for your reply and for sharing your experience. May I ask, do you have any secondary medication in your pump? Only having 1 med in there is often less effective than if you blend in a second one: I have a mix of clonedine and hydromorphone in my pump. I used to only have hydromorphone in there but once we added a strong concentrate of clonedine I felt better analgesic effects. Moreover, in my case the pump never managed to replace my need for oral meds. I still need orals in addition to the pump meds. I would never survive this hell with only the pump meds. One reason why your
doctor is weary of increasing the dose in the pump is because it carries with it
much risk. It is a much safer option to add orals on top rather than increasing the pump meds; doctors are dead scared of cranking the pump too high for good reasons; too much pump meds can easily kill you. But ask your doctor for some oral opioids for breakthrough pain. Also I’m sure they can increase the pump some to see if it works better. In comparison, last year my pain was so out of control that I got a spinal cord stimulator to aid with the pain.
In order for me to see a 6 on the pain scale I need all my 6 boluses and pump meds to work in symphony with all my orals and the scs stim. I think of them all as layers to mask the pain, and the more layers I have the better my pain is controlled. It sounds as if you experienced the exact opposite of that, when you lose one or more layer the pain will come back and hit you like a freight train. Crps pain especially will knock you down so hard it is hard to even get out of bed to go to the loo. If you have more questions feel free to dm me, I would be happy to discuss this further and even talk over the phone. Wishing you all the best, I know what you’re going through.