I have a Pain pump with Morphine, I'm still in so much Pain

@alexandercrps
Hi, when I told my doctor that it wasn't working & I meant it wasn't giving me relief & he thought that the pain pump wasn't working so I had to endure 7 weeks while he checked the implant and a CT scan and everything was working fine, I asked them to please change the medication but they didn't, so I Then was maxed out at 14.6mgs and they said they would have to go back down until I was at 0.1mgs so I started going down 30% a week and now I'm at 0.404 mgs, I have about 6 more treatments to to get to 0.1 mgs, and then said they would remove the morphine and flush out the line with Saline, and I've been thinking all along when they gave me a morphine refill why couldn't they have removed it then and flushed the lines out and gave me the new drug hydromorphone, I believe they could of it just didn't want to, meanwhile I've been suffering feel like I'm crippled but I'm close and I can't wait until I get the new hydromorphone because I'm sure it will work. I'll certainly whether one now how it goes thank you Michael

Hey Michael- I just lost my entire written response back to you cause I got a call and it didn’t save. So I’ll(try to) be brief. First off, I only got the pump because all the docs drank the micro dosing kool aid. It’s a total sham. Of course 275 mcg. After 7 weeks dry knocked my pain out of the ballpark. And they know from my history I would acclimate to my dosage very quickly. But I found myself begging for an increase at every monthly refill. It took 18 months and a visit to a colleague to surgically check the integrity of my catheter and then he tripled my dosage and that made the world a better place to live. So much for “micro dosing”. From then on, she trusted me to inform her anytime I needed an increase, I got it. She’s the doc that switched me to fentanyl (without the ordeal you went through) because dilaudid was not yet approved for pumps. When I moved here my doctor informed me at the first refill that he is an interventional pain management specialist that doesn’t prescribe any medication at all. And he had his own practice, but shut it down to work at a big PM clinic. That’s run like a paramilitary organization. I’ve gotten two 15% increases in 2 years. I have no idea what kind of pushback I’ll get with my med change request, but I’m 99 44/100’s % certain I will get resistance. My health has significantly diminished since I moved here. I’m currently in divorce proceedings because I can’t live like this anymore. And she no longer remembers the level of pain and suffering I endure on a daily basis. I can only hope that wherever I eventually land has better doctors and healthcare in general.
My current diagnosis is:
Failed Laminectomy Syndrome
Failed back surgery syndrome in both my lumbar and thoracic spine.
RSD that’s now bundled into CRPS.
Severe left body nerve damage.
Total hip replacement.
Waiting on a date for a total knee replacement.
Anxiety and depression
And lastly, severe insomnia.

I have so much more to tell but I just can’t type anymore on this phone.

I did want to ask what brought to the world of pain management? And how long have you been here? Gotta go, my right wrist is screaming. God bless you brother. This would be so much easier if we could just talk.

Greetings, fellow pain pump users (and those contemplating such a device). I have been a frequent commenter here and would like to pose a very important question. Since I have had no pain relief from my pump in almost three years, I have to wonder what's going on. Trial by injection with hydromorphone went great, dropping my pain down to about a 2. I currently stand at 3.5 mg/24 hours with six boluses of .35 mg each. After my last increase of ten percent, I notice that, after giving myself the fifth bolus, the pain in my feet seems to decrease quite a bit. Not every time, but often. My PM doc keeps telling me that I am already on a high dose, which is true. But, there others here on Mayo Connect who are at a higher level. I believe that I may need to go even higher to get pain relief. By the time I give myself the fifth bolus, it is usually late in the day (there is a two hour wait in between boluses. I am not sure the doc will give me a higher dose.
So, is there a problem with the catheter placement? Was it put in a less than optimal position. I had the pump checked under fluoroscopy a month or so ago. Everything checked out okay. I have seen some here saying that the placement of the catheter is best checked using a CT scan. I know this is a lengthy post and somewhat rambling, but I need some input. My PM doc is not very forth-coming with information or other suggestions. H always seems to be in a hurry to move on to the next patient. Thank you all for being such a help to me. I wish you all a blessed day.

@bilt4pain I dont really have anything concrete to add to your post but to tell you i suffer excruciating pain levels. My story is all over this blog in places. I had a small abdominal wall tear which was left unrepaired for 6 yrs, it didnt show on scans. I was bedridden, couldn't walk or hardly eat, got down to 78 lbs , eventually after threatening " unaliving", ( the pain was horrific, it spread thru out my digestive system, which is now permanently damaged.), I eventually got repair surgery but due damage to my colon, I never fully recovered. The pain ultimately landed in my Celiac Plexus , ( solar plexus), bundle of nerves on the aorta....pain is excruciating and started affecting my spine.
Horrendous experience with a SCS, which rendered me almost unable to move due severe nerve irritation.
I too am now diagnosed CRPS. When removing the Stimulator they found i had a haemota and a spinal canal bleed, much scar tissue, so needed 2 laminectomies to stop the bleed. 6 months post surgery the nerves in this area and in my Lumbar ( i had a large bruise in lumbar immediately post surgery.) have gotten more and more irritated, to the point if I try to bend the Pain sends me into the stars...its 10/10 and worse. Eating still causes severe pain , i feel severe nerve irritation in lower lumbar soon as I start digesting...horrible sensation.
Im sorry for your divorce, I found stress highly aggrevates my CRPS , 20 mg of oxycodone doesnt touch the pain, neither did 2 shots of Dilaudid.
All I can tell you is try to keep stress free. I have done much reading about Neuroplasticity and how our brains learn pain. Its unlearnable but not easy.
The method goes, learn to be grateful for all the small things in life,try to shift to a positive state, hard in pain I know, but after 3 months it, this new Mindset is helping me.
I no longer fear my pain and try to understand what its telling me. Our bodies WANT to heal but cannot do so under stress. Like you I'm going thru a " divorce"...not literally, but have left an abusive relationship which kept me very sick, stress is a killer for pain. Managing alone is hard, I have been bedridden 90% of the time during last 2 yrs, due severity of pain but slowly with Peace its improving. There is no magic bullet for recovery but Im finding the state of " gratitude " is slowly helping me heal...the body needs Peace, no stress. All I can do in this post is offer support but a shift in Mindset has truly helped me....my pain hasn't magically disappeared but when im able to be a little busy, i'll have 30 mins when pain doesnt dominate my World, im trying to build on that.
Good luck, sorry this is long, your post touched my heart....CRPS isnt called the suicide disease for nothing...

@heisenberg34 I think that a catheter revision might be a solution to this. As I have said many times before, if the meds are not dropped on the right nerve/spot it simply will not work. I think you should ask for some orals for breakthrough pain because the pump isn’t always capable of dealing with all the complexities of each case/injury. This device ia the very definition of “targeted pain management”, the placement of the catheter matters a lot when dealing with pumps. Also I am a strong believer in having two medications in the pump to increase efficacy. If you are not receiving any relief then something needs to change, maybe a revision surgery is necessary to make sure the catheter is exactly where it needs to be. I hope you figure it out and get help and relief. This group will always be here for you, if anything just for a listening ear

@anniesezu812
Thanks for the kind words. You’ve had quite a rough journey yourself. And you bring up 2 very important points. Stress is a killer, it can give anyone anxiety, and significantly increases your pain. Being busy and mentally occupied with something other then pain can take a while to master, but is ultimately the best thing we can do to not think, hence feel pain all the time. Last, but most important is the label we get indoctrinated with CRPS being the Suicide Syndrome. It’s unavoidable. You hear about in the PM doc waiting room, all over social media and from your own personal experience. I’m a member of the Invisible Pain Society. A professional advocacy organization that lobbies with the government & big pharma, as well as patient groups. I met the the current CEO when we were both RSD patients at the same doctors office. Now when she writes an article in their magazine, after the sign off, there’s a box below giving information how to get help when facing suicidal ideations. Those outside the chronic pain community have looked at me sideways when I discuss the first 10 years of this affliction and how many times I thought about it. I have lost 5 acquaintances by their own hand. And IMO, it’s not depression related, it’s desperation related to find a way out of hell, even for an hour…

@alexandercrps Thanks. I appreciate your words of wisdom. If only my PM doc had an ounce of empathy. I've been going to him for two and a half years and the only thing he has done is to refill the pump and take his money. Despite my requests for him to look deeper into my case, discuss it with colleagues, even try altering my meds(tramadol, gabapentin, and diclofenac K). Apparently he knows everything so there is no need to consult with anyone else. Sorry, I am just expressing my anger. I have gotten more help and information from this group than this doctor. I hope you have a blessed day.

Greetings, fellow pain pump users (and those contemplating such a device). I have been a frequent commenter here and would like to pose a very important question. Since I have had no pain relief from my pump in almost three years, I have to wonder what's going on. Trial by injection with hydromorphone went great, dropping my pain down to about a 2. I currently stand at 3.5 mg/24 hours with six boluses of .35 mg each. After my last increase of ten percent, I notice that, after giving myself the fifth bolus, the pain in my feet seems to decrease quite a bit. Not every time, but often. My PM doc keeps telling me that I am already on a high dose, which is true. But, there others here on Mayo Connect who are at a higher level. I believe that I may need to go even higher to get pain relief. By the time I give myself the fifth bolus, it is usually late in the day (there is a two hour wait in between boluses. I am not sure the doc will give me a higher dose.
So, is there a problem with the catheter placement? Was it put in a less than optimal position. I had the pump checked under fluoroscopy a month or so ago. Everything checked out okay. I have seen some here saying that the placement of the catheter is best checked using a CT scan. I know this is a lengthy post and somewhat rambling, but I need some input. My PM doc is not very forth-coming with information or other suggestions. H always seems to be in a hurry to move on to the next patient. Thank you all for being such a help to me. I wish you all a blessed day.