Pain pump, I have one, how about one for you?

I have had many ablations and have been on opioids for years for debilitating severe osteoarthritis in all joints and bones in my body,my pain doctor suggested this as there is no way to continue to do these ablations and procedures to so many different areas with any success as they have done little to give me any quality of life and the oral pain meds do almost nothing after all of the years of being on them.

I also have a pump, But am not finding the relief you are. Plus the pump is in my stomach and is VERY uncomfortable. Doc says I am the only one who has ever complained about that. Is your uncomfortable?.

Yes mine is very comfortable unless I bang it on something or one of my dogs steps on it. Are you very thin? I imagine that could make it uncomfortable. What kind of discomfort are you having?

As far as relief goes, what drug are they using and were you tested with that drug for effectiveness? There is a thing called Gene Sight testing. Goggle it, it is a company name. Mayo, came late to the game but they are also doing a similar test. They read your DNA from a cheek swab and predict which drugs you will metabolize well, primarily for psychotropic and mood drugs. Someone told me the website doesn't mention pain meds but when I had the test done, for other reasons than pain, there was a page in my report dedicated to pain meds. If my pump had Morphine in it, it would not be very effective as no form of Morphine has ever worked for me. I had a spinal tap where they tried putting the drugs directly into my spinal fluid which is how the pump works. Dilaudid proved to be very effective so I went with that. They can also use other drugs. Fentanyl is the strongest but may only be used as a patch. Dilaudid, (hydromorphone) is 4 to 5 times stronger than morphine.

What is your dose and do you have the Bolus, the device that lets you administer 10 tiny doses ov er 24 hours. I started at 3 mgs. with another .9 mgs. that I can administer in ten .09 mgs., once per hour, limited to 10 doses, or bumps as we call them in 24 hours. Over 3 years My dose has increased to just under 4 mgs. plus the extra .o9 mgs. If it goes up too high it can loose all of it's effectiveness and make your situation worse.

If you were previously taking large oral does of narcotic over a long time, it could be that your already experiencing that problem where the drugs aren't effective. I never got good info on this until I met with a consulting pharmacist who explained it to me. Ithink I was in hat situation when I first got the pump. That reaction is not permanent and my pump has become much more effective, so much so I'm weaning myself off the very small oral dose they had me co tinue taking. (I think it acts as a placebo which is not to be ignored. Placebos are very effective in all sorts of situations. If you think something will help, it probably will.)

I'm not a Doctor or any kind of medical worker. I do have over 30 years of history as a pain patient and believe me, I've done my research. If there is a problem with comfort, it could be how it was placed. I'm heavy and was 50 lbs. heavier when I first got mine. Now it sticks out but I'm not very active. I wouldn't recommend it for someone who plays contact sports. The problem with effectiveness could be due to how well placed the catheter is. I doubt this as they could not get mine into the first two vertebrae the doctor wanted to get at as there was too much scare tissue. He said that wouldn't matter as once it gets in your spinal fluid, it will spread out.

Remember, no pain management system will ever relieve all your pain and they shouldn't. Getting more drug than you need for pain will get you high and that is why people get addicted. The brain has a strict hierarchy, pain first, euphoria second. I'm disabled by pain. I can't walk with out a cane or walker even over small distances. Pain will sit me down in about 50 feet of unaided walking. My pain is reduced enough that I can enjoy my life, sleep well and continued the activities I cherish.

Any other questions, don't hesitate to ask.

Good luck, Love and Blessings

Hello @wardept and welcome to this discussion and Mayo Clinic Connect. I am happy to see @wsh66 has responded to your question on an uncomfortable pump and provided you with a wealth of information based on his experience.

You mentioned your doctor told you that you were the only one who has complained about discomfort. Have you sought a second opinion from another doctor since?

What are the physical restrictions? Can you run, jump, play tennis, get massage, chiropractor and accupuncture? Any thing you thought would be okay, but found you were restricted from doing it after you had the procedure?

Hello @jthomas458 and welcome to Mayo Clinic Connect. I can see you are interested in connecting with members to learn more about pain pumps and if there are any restrictions that may impact your lifestyle.

If there happens to be a specific member you would like to connect with, you can reply to their post specifically and/or use the "@" + their user name. For example, yours is @jthomas458. That will send them a notification to join the discussion.

Recent members such as @wsh66 @wardept and @ga29 may be able to share more about what they've learned through either research or personal experience.

Have you been recommended a pain pump?

My pain management doctor has recommended that I trial a spinal cord stimulator. I have not decided to do the SCS trial, but I might be moire interested in trying the pain pump injection test. Before seriously considering either of these implanted devices, I plan to get a second opinion about surgical options. So, I'm just doing research now.

Hello, I just read your post and must respond a bit...I don't have a pain pump, but my 52 year old son does, for 3 years now. It was his last resort. Definitely not something he chose nor wanted. He has endured extreme pain from dystonia and nerve pain in the neck/shoulder. He has dilaudid with ability to give himself a bump several times daily if needed. It has saved his life as he now can have some sort of functioning life. Not much, but limited activity.

I read the post from @wsh66 on this group and suggest his comments were right on re my own son. He seems an excellent contact for you.

I was shocked at your question about ability to function with a pump. My son can't function due to the illness and pain. The pump allows him to live alone, care for himself and his puppy, talk on the phone some, watch tv, walk limited, and sleep some. The thought of jumping, running, playing tennis or soccer or any other type of sport is totally in outer space, unfathomable for him. I have lived with him through this horror for the last 20 years, so I do understand the process. I also understand, at least it seems, there is no person who has a pump and plays tennis or soccer????

I may indeed be wrong, but it is a last resort, not a simple treatment. He's been through horrors for all these years, trying everything possible before having the pump installed. Perhaps he waited too long. May be, but the outcome would not be different, just a different timeframe.

So, there are my thoughts. I don't know how correct, but I do know the pain pump isn't a piece of cake. It's a delivery system for some of the worst pain with some of the strongest medications available. So, a lot of research is good.
I hope if this is something that you need and will give you relief, you get the help and do well. I do think you may be not understanding the severity of this treatment, if you think you will be playing sports again.

Blessings and may your pain be less, controlled and your life be filled with good.
elizabeth

@ess77 - Your personal perspective is so helpful. I feel the pain management doctors are too quick to recommend spinal cord stimulators and pain pumps. Your perspective helps me understand I am not ready for "treatments of last resort". I function with a lot of pain now, but I still walk my dog and perform my minimal activities of daily living.

I'm glad to share my limited information gleaned from my son's trials, but you must consider all your options and listen to your doctor's recommendations. If you are at a point a pump is appropriate, let your doc be your point guide. And, perhaps you can do more and have less pain with better control, but if you can enjoy your life now, search other options as well.

Ck out the behavioral therapies that help so many, are helping me a lot with the pain I experience. Cognitive behavior, central sensitization....ck these out on our Connect and see what you think. You may improve w/o the pump or other treatments....
blessings your way, elizabeth