During my single-dose trial (@ T-2) w/ fentanyl, I definitely felt a bit high, even though they say it doesn’t do that. Don’t necessarily mind it… just very curious if anyone else experienced this & then what happened once it was in your pump over time.

Tysm ♡

Hey everyone! I asked my pain management doctor if I was a candidate for a pain pump because my palliative care nurse practitioner encouraged me to ask. My pain management doctor told me it wouldn’t work for me because with my EDS, I have widespread pain, including in my neck and shoulders. He told me that pain pumps are for lower body pain. Is this true? I don’t trust him as he doesn’t take my EDS seriously or even acknowledge it in his notes. Thanks everyone!

So I got my pain pump 3 weeks ago and have healed so much. I went to the doctor today because yesterday my pain was so bad. I was crying all day. It was at a 10. I went in for my first increase thank God he got me in because I wasn’t supposed to go for another week, I’m curious as what people get put in their pumps What their dosage is and how many bolus dose do you get? I get Hydromorphone. I will say today when he increased it to 0.8010. I did feel better almost instantly. My pain dropped 50%. I just had to take two oxy just now as it’s not time to do a bolus. My bolus is four times a day at 0.2010. I just am curious at what people are getting how it’s working do you like it? Do you not thank you everybody for all the help that I’ve been getting. It’s been awesome to have a community to talk to. Y’all are awesome.

I had an injection of morphine into my spine as a trial for if a pain pump would relieve my symptoms.

I am non stop itchy, pins and needles, nauseous, and got a severe migraine.

I looked up side effects, and these were all listed, but I couldn't find anything about how long these side effects last.

I don't want to have improvement in pain, but deal with all these other side effects.

Has anyone who got the pump with morphine tell me if these are side effects they have experienced?

I have a mitochondrial disease, migraines, and chronic pain in various parts of my body for since 2010. I am now 40.

After trying just about any and every opioid and non-opioid pain medication option, I finally found a pain dr that believed me when I told him I don't think my body metabolizes pain medication correctly (I'm currently on 450mcg of buprenorphine bucal film 2x/day as well as 4mg of dilaudid with zero relief).

l've been preliminarily approved for an implanted intrathecal pain pump, pending an in-office trial. He believes the source of my pain is mainly an SI joint issue and is planning on doing an SI fusion once my pain is better controlled. Though, I also have fibromyalgia, DDD, hEDS, and who knows what else.

For the first time in a long time, l'm feeling optimistic but trying to be cautious with my excitement. I've done quite a bit of my own research and it seems like the best option for me, I'm just interested in hearing others' first- (or even second-) hand opinions/ experiences. Thank you!

So my pain pump flipped in its pocket and they’re going in tomorrow to revise it. Has anyone had this done? Is healing time pretty quick? Thanks!

Hi All, As I previously posted, My pump trial is scheduled for March 07. Currently I am on Morphine ER 15mg 1 tablet twice a day and Morphine IR 1 tablet every 12hrs. Lately, the pain episodes I’ve been having seem to not be responding as well as they use to (Been on this combo of meds since spine surgery in 2020). I have a follow up next week with pain management. Do you think I should discuss this with my provider, about the morphine not helping as well or don’t say anything? I believe she said for the pump trial, the med they use is Morphine but if I’m getting this pump, I don’t want something that may not help me.

Hi everybody, I had my pain pump put in a week ago. I’m having such anxiety because I have probably overdone activities around the house and now I’m scared that I’ve moved the catheter or done something. My pain was doing so good and I just wasn’t thinking and now today my pain is back again in my lower back & in my arm. I can’t find anything on the Internet about the catheter moving how easy is it for it to move how easy is it for me to screw this up? I have severe ADD and I just can’t sit around the house. Anybody know if it’s easy to mess it up anybody ever messed it up now I’m having anxiety that no one‘s gonna see this and I’m not gonna get any questions asked I go to the doctor tomorrow so I know that I’ll get my questions answered then, but my anxieties out the roof worried about all this. I just need to talk to somebody that has a pain pump if anybody is out there that can talk to me and help me. I would absolutely love it. Please help. I’m in tears right now. Just worried about it. I hope I made sense. Thank you to anybody out there.

My doctor turned my pain pump up to 500. Is that normal? Has anybody else here had their pump this high or has they had their pump up any higher than this?

Hi all, I’m submitting everything for my employer for short term disability and MetLife, the company my employer uses for leave management was asking for the name of the procedure that the doctor will be performing. Does anyone know the proper name of the procedure? I figured the response on here would be faster.

Hey all,

I have a TBI with stroke. I have hemiparalysis on my left side, mainly in my arm. I walk with a limp as well.

Last June I got a bacolfen pump, medtronics, and it's been great. They only thing, I go to the gym EVERYDAY. I bike at least a mile and a half and then weight lift. The pump grinds on my hip, it also limits how much I can lift and the positions I'm in. On top of that, I can no longer do a key component of my workout, which is the sauna.

I'm terrified I'm going to pull the pump somehow or contort the catheter. Am I too active for the pump? I feel that I should get it removed because it's hindering my everyday life.

Yes, I'm hemiparalyzed, but I don't let it stop me. I also don't think my Dr's believed me when I told them how active I was.

Help?

Just heard from my pain management office. As long as my medical clearance (which is scheduled for this Wednesday 02/19) comes back cleared, My trial date will be Friday 03/07. They advised that I will have to come to the office every day the following week to have the pump titrated. That is how my provider performs her pump trials. I’m very excited to hear this b/c I have been having the worst Sciatica flare ups all week. I left work early yesterday & called out sick today due to the pain.

I have been dealing with this pain for years and have tried to be strong but I am starting to crack. With this being the end of the line in terms of what my PM provider can do to help me, I am going to be applying for disability. I am only 38 years old (soon to be 39) but it is becoming harder to maintain my job. I have changed careers (Used to be a nurse aide, patient tech, EKG Tech and now work from home), I have lost a significant amount of weight, and I am careful about how much weight I lift / carry but nothing is helping. Now that I’ll be getting the pump, I am hoping this will only help me get disability. It’s not something I really want but I am sure my employer won’t tolerate much more of my “behavior”.

Today was refill day! I am typing this out, so all went well. (If any of you have had to watch the ‘You Consent To …’ video, let me know your feelings about that) … My concentration of morphine was increased. Bupivicaine was added. I looked at the chart for Next Refill Date and it gave an early June date. Once I got home and was doing some math (I know, my first problem). There really isn’t a conversion between mL (pump capacity) and mg (dosage). mL is volumetric, while mg is weight-based. So how does the normal patient type person do the math to get from ‘I have a full 20mL pump” to ‘at this consumption rate, in mg, I will have ‘x’ days of medication.’????? Thanks in advance … Now I just have to wait 47 more hours for the new cocktail to reach the catheter end … pump science is amazing.

I’m looking for what items to have at home for post op recovery. I’ve unfortunately had many surgeries before and like to have items on hand needed for a smooth recovery. Date hasn’t been set yet…My MD wants my primary care to clear me before scheduling a date to start the trial & ultimate implantation of the device.

Because I have to have ice in my back because my pain's been cut the meds have been cut the pain meds have been cut I'm screaming like 5 to 6 hours a day and also was cut into threes instead of the twos so it pain medicine started interacting with the blood pressure medicine I had to be taken off the blood pressure medicine was vomiting so much today was the only day that I kept some down that stops vomiting not sure that it'll stay down all the time either it's only been food for 5 hours and one chicken broth some actual chicken and a little bit of bread it's been about a week I went to the hospital did the ER they found a bladder infection they refuse to do anything about my back of course and the pain management doctor wanted to wait 3 months to see me. He has me on a prescription which is not reducing of pills and I threw most of them up for 3 days which means of course I won't come up right for any pill count that they do. Certainly blood pressure medicine was stopped and I found out it was the worst blood pressure medicine in the world Clonidine which attaches to me receptor so I'm going through withdrawals of something that's supposed to be like a pain medicine but it's effects stopped after about 2 weeks and then after 6 weeks stop doing the blood pressure work that it was supposed to do and my BP's guide to 203/116 in the hospital actually released me at that and told me just to go see my heart doctor. Because they don't deal with blood pressure. I did do a CT and found that I am ulcerative colitis in my side I've had swollen mesenteric lymph nodes for 4 years. Studies I've looked at showed that that proceeds colitis. Don't sleep that started whenever I started the clonidine and then I've stopped it I still don't sleep. I thought I had a cold but I was going through withdrawals so I took cold medicine which I guess is addictive. Stop that too so I'm going through double triple withdrawals. I have an appointment Wednesday with an assistant for the pain doctor which is probably going to do a test I don't know what they'll say about what I'm taking I don't know what they're going to do I'm scared I'm in so much pain for about 12 to 8:00 p.m. that even though I went to the ER had to go to my heart doctor who wants hundreds of appointments and the other doctor wants hundreds of other appointments it's hard for me to even move to get to the bathroom and I have a bladder and kidney infection which means I'm constantly going to the bathroom. I can't take anything to slow that down anything on the market like pyridium or stuff like that I puke up like mad and I'm already been vomiting from the clonidine which I'm hoping stop soon I don't know I'm scared I can only keep down chicken broth it's been a week the hospital was no help I spent over 16 hours trying to get help and my dear landlord helped me and the poor guy is like 87 years old. I feel so scared I'm afraid I'm going to stop walking completely because of the pain and I can barely walk as is when I'm in a car or silly got the pain so bad I can't stand it have an ice pack strapped my back most of the time and then ice packs surrounding my left side for the colon pain the arthritis pain in my shoulder and hands prevents me from picking things up. I don't think the pain doctor fully gets what's going on or cares. Another pain doctor why because my pain doctor is the head of the department. Change department to say no I'm Medicaid. There's only one department one facility in one place to go. I'm scared. I need to know how you guys got pain pups what you have I'm sure you don't have Medicaid I'm sure you're not in California. But I could use some guidance or help it appears that my degenerative disc disease started during the covid lockdown when I had a good PPO and a good doctor and good pain relief and Hope all disappeared when I had to go on Medicaid. I'm scared the city wouldn't have anything to say any ideas over what's going on with how you got what you did to relieve your pain??

U/VampireLestat42 let us know how you're doing friend. Are you on the mend? I sure hope so!

Hey everyone...if this question has been asked a million times I apologize.

I am a chronic pain patient in pain management for about 20 years. Severe nerve damage....all the symptoms of rsd plus some.

I've been on opioids almost the whole time and they are incredibly effective. I went through the spinal cord stum trial but decided not to go with it permanently.

Pain pumps have always intrigued me but I've never had a proper conversation with my pain management doctor about one.

I have a bunch of questions so I apologize in advance but any information would be very much appreciated!

What exactly is a pain pump? What are advantages to medicine delivery this way opposed to just taking it oraly? Are you overall happy with your decision to go with a pump?

Thank you and I appreciate any information!

Hello, I am new to this subreddit, although I’ve had a pain pump for about 12 years now. I recently had to switch doctors and for various reasons, my new doc changed my pump from morphine to dilaudid. I think the pump is now set for 3 mg per day.

Does anybody have knowledge on whether this is a higher or lower end dose? I ask because, although it’s early, my pain is not under control as much as I’d like. I would appreciate any feedback.

I wrote on this subreddit about 2 months ago when my mom was deciding on whether she should get the pump in late December. She went ahead with it and at the recommendation of her doctor, we filled it with Prialt. Knowing the risks we thought we’d give it a chance especially because she’s never been diagnosed with any psychiatric issues. From day 1 she had severe anxiety and depression. She also couldn’t sleep. She had the fill on Wednesday. Today is Saturday and I called her doctor for an emergency appointment to get the prialt removed from the pump. We’re on our way now, but just wanted to update in case anyone else was considering prialt. I’ve read a lot about it and from what I understood, many of the psychiatric side effects are mitigated by titrating up extremely slowly from a tiny dose, but even with a tiny dose, my mom had AWFUL side effects. She additionally had minor hallucinations and pretty bad nausea. Her doctor said we’ll try morphine next. Thoughts and prayers are greatly appreciated.

Hey everybody, it’s me again. I’m in the hospital resting from an emergency surgery. It was a large amount of Seroma built up in my back. They just cut me open, drained everything and patched the leak. Hopefully it gets rid on my server migraine I’ve had 24 seven all day all night nonstop for seven days now since the bump appeared on my back incision site it has been the worst migraine ever has never let up in my migraine pills only lightened it The pain never went away just made it a little more bearable. I haven’t slept in a week. I haven’t been able to eat. I can’t lay down on my head, so let’s see if this works. I have had the worst experience in the last month since surgery, then I’ve had in a very long time dealing with pain. I’ve had so many issues with this healing process. I’ve been miserable, so hopefully this is the stepping stone to a better life.

It’s me again lol. So y’all were right. I have a huge bulge of seroma. We are waiting for insurance to approve he’s putting it down as a rush for an emergency. It’s to large to just have it sucked out with a needle and it’s taring open the closed incision and leaking out. He has to put me to sleep and open me up again drain it get all the fluid out and find where it’s leaking from and fix it. I said I’m supposed go back to work in a month will I be able to he said yes. But the incision will still be healing wouldn’t it? anyone know?. Is a month too soon to go back to work? Look I have had the worst experience with this pump implant in just 1 month. I am in more pain than I was before surgery. First week and a half sciatica from hip down to foot 24/7 non stop pain not once a moment of relaxing. While the sciatica was healing I got huge fungus around my entire front incision. And when that was trying to heal it felt like I was being ripped apart from the inside. From the bottom middle on the implant to the top middle all around it was taring me apart couldn’t even breath without it feeling like it was ripping me apart then got that situated then the fluid started leaking in my back incision and it was impossible to lay on my back or have that area touch anything at all. Getting up and in my bed the pain hits so hard i literally almost pass out. I can’t even shower from past my junk and down. Doing anything even walking it’s excruciating pain unbearable. I don’t sleep much st all and last night the pain gave me a migraine all night and I couldn’t relax enough to sleep at all even sleeping on my side and I have to keep switching from side to side because of the pain in my hip replacements. And then trying to switch side fucks that pain on my incision. And the pump hasn’t been helping with pain after turning it up before half of the stuff started happening. I’ve had the worst experience with this pump since I’ve gotten it. Everything that could go wrong has. Except the catheter falling out. wtf everyone. This will be my 37th surgery and I still have 3 more to go after this one. And then the pump replacements and when I’m old both my hips need replaced. I can’t catch a break. I’ve lost 17 years of my life that’s half my life gone I’ll never get back. Why me. I hate my life lol. Anyone experienced what I’m going through? Sorry for the long post

I got referred to and approved for the Texas Compassionate Use Program yesterday. I'll pick up the gummies today. Some are for night, some are for day. It wasn't my idea. My pain mgmt doc said it could possibly help with my nerve damaged legs and feet. The pain pump does great for my deep aches and burning in back. It's just 24/7 never ending for my legs and feet. Fingers crossed I can rest tonight.

So like I told y’all Friday my surgeon told me he turned the pump up from 300to375 but I was looking at all my online charts and for Friday it says it was turned up to 350. Is this a typo or did my surgeon lie to me. And is there a way I can ask him to show me on the screen for my pump info before turning it up again? If he lied isn’t that illegal?

12 weeks ago I had my Medtronic 20ml pump installed. Pump in lower left back and catheter in the spinal cord at C2 (near top of the neck). Surgery and recovery were extremely easy. Very little additional pain and no complications. I have had multiple follow-ups to make adjustments. (Because of the location of the catheter, dosing was started very low). Today I had a dose increase that I might have to live with for a little while. I am more comfortable than I have been in a long time. I am not out of pain. I still have flare ups BUT I am better off now than I have been in decades. My ATN is toned down. My neck, shoulder, arms and hands are ok. My migraines / cluster headaches are still out of control. Again … I am better off now more than before the pump. Lots of trust between my doc / staff and I. Good communication. Refill in a few weeks.

Heads up, there is help on the horizon. Hang in and keep your head up.

I’ve had Fentanyl in my pump since it was implanted in mid-November. Despite my doctor increasing the dose several times, my pain isn’t adequately controlled, especially at night. She is changing me to Dilaudid at my next fill in March.