Three years ago I had a pain pump put in which was great for the pain but Ive had increasing side effects that make me just as miserable as the pain. The pain place I go to looks at me like they have no idea why Im having these problems and have referred me to other doctors to see if they can help. I have read alot of information and just know that its the drug. Well Ive been going down on my pump and now all of a sudden the pain tells me she wont increase my orals and if Im in pain I need to increase my pump. Makes no sense to me and actually makes me angry. Side effects very high blood pressure, gained 80 pounds, swelling in legs severe, sweating so bad that my hair is saoked, changed personality, severe bloating these are the main things. Anyone else out there with these side effects? I now dont know what to do. I feel like this PA wants me to be miserable.
Hi patty, I can certainly explain what the docs are doin and why from a medical standpoint,, but I don't think you woul take it as being suportive. The PA doesn't want to see you miserable, but he does know that if they replaced your present dose of intrathecal meds with an equivelant dose of oral meds, The opiates would still be the problem. Intrathecal delivery doesn't make people gain wieght. It can make living a sedentary life exeptable the same way it makes intolerable pain managable. Living a sedentary life making the doc or meds responsable for every aspect of your life is what makes a 60 or 80 lb wieght gain possible, not an individual drug or delivery system.
Steroids cause weight gain and water retention and it's an unfortunate price people have to pay that have to take them to control many diseases, but Although opiates there is a link between some water retention and opiates, it's not specific to the pump. A pump simply doesn't make you eat more and be less active. Opiates do make it more tolerable to live that lifestyle and it sounds like your just sick of it. Unfortunately your not going to get the results you want by simply changing the way the meds get in your system.
It's amazing how we don't except 90% of the docs opinion regarding long term use of opiates, but when that 1 in 10 doc actually agrees to use opiates he's supoosed to turn complete control over to a patient? There is a price when your using the most potent meds and delievery system known to man and your one in 10 doc willing to use them is aware of the price, your just not willing to acept reponsability for your part. You have the most advanced and efficient method to delivery opiates, how is using something that has agreater side effects, causes more impairment and circulates through your entire body effecting more systems be an improvement. If you could decrease or change meds so that you can function and do the work it takes to remain healthy, it might make a difference. In order to replace or give you more relief than your getting now will require such a high dose of orals I don't see how it would make a difference in side effects.
I think you confusing docs blaming the pump for your problems with their veiw of opiates. If you went in and said you take 600 mgs of oral morphine per day or 200 mgs of dilaudid, they would blame the oral meds just as quickly as they blame the opiates being deliverd by pump. You just wouldn't have a pump to blame for everything, so you can continue to think opiates are harmless and it's the delivery system causing the problem. You wouldn't have an implanted object to blame, just yourself for allowing your dose to escalate beyond the point it increases function.
There is a reason 90% of the docs you see would have an objection to the level of meds many CP patient take. Does it mean 90% of the docs are wrong or perhaps there is some place in the middle between no man should experience pain and don't use opiates. Of course there is a chance that those few docs that will use opiates need to be more diligent regarding informing the patient of potential consequences, reasonable expectations and expecting to see improvement if they think it's possible. He should have explained the reason using intrathecal meds is superior to oral meds. It doesn't mean a dose can't go beyond what your willing to tolerate with pump meds.
I use dilaudid and have multiple failed back surgeries. I have to accept that all I can get relief wise is 50% or I loose function, develop ED, can't urinate and can't stay awake. It doesn't mean orals are better because BT meds take more pain away, they also impair me. If I take BT meds I really feel the effects and feel impaired. So going back doesn't make sense to a doc because that's how it's supposed to work and has worked for years for you. You try other methods, your try orals and they fail and you have a pump put in. Going back doesn't make sense to the docs that use these pumps.
They also need to ensure you have reasonable expectations and be sure you are taking advantage of the relief your getting and actually benefiting from opiate use in more ways than reported lower pain scores. Chronic pain isn't treated like hospice and when someone is dying they don't care about weight gain. Pain management is about function as much as it is about making you comfortable. If they make you so comfortable you can't function, the side effects your experiencing are easy to predict. It's up to you to decide when opiates are allowing you to accept an intolerable lyfestyle to continue on for years even when you become more and more miserable as time passes because they give less and less relief.
It's not the pump that made this possible, it's the opiates and the effect they have on you as far as motivation, and the sedentary lifestyle which causes depression, weight gain, "even heart attacks at 36" and every other problem your complaining of. There isn't a pill to replace excercise, 3 years of no excercise will certainly have an impact on your weight, water retention, hormonal function, sex drive, etc etc etc.
The docs that appose long term use of opiates have no problem placing blame, you have just misinterpreted their concerns about opiates and placed it on opiates recieved via pump which doesn't make sense because pump meds have less side effects due to the miniscule dose needed when delivered to the IT space.
I also have dilaudid in my pump. I gained weight over the years and lost muscle tone, opiates decreased my labido and testosterone level and I had a heart atack from being sedentary. I realized I don't have to live the rest of my life like this and I've lost every pound I gained since starting on opiates by excercising. Instead of allowing what would have been an intolerable lifestyle prior to opiates to continue on for even more years, I decided every day I didn't do my part was something I had to take responsability for. I was going to have pain whether I walked or not or whether I layed in bed. I found elyptical equipment allowed me to go longer and farther without the imoact walking has.
You really have to find something you can do every day or everything you're unhappy about becomes a prodct of what life has become and how your dealing with it. As hard as it sounds when your in pain, excercise will help every problem you mentioned.
The doc can't make me or you excercise or be more active, it's up to me to take advanatge of the pain relief and adjust my lifestyle when you realize your going to hurt anyway. It's your job to show how opiates have benefited your life or except that they really haven't.
It's really not the delivery route and if anything, going back to orals would have an even greater negative effect. Perhaps a change in IT meds to Fentanyl or morphine, but dilaudid is dilaudid, regardles of how you take it. Swithing to high dose orals isn't going to fix anything. You will need 50-100 times the number of mgs orally that you recieve now to obtain equal relief. 250 mgs of oral Dilaudid would knock the motivation out of most people and make spending your days on the couch or in bed exceptable to just about anyone.
. A little reading on the subject doesn't equate to years of school and residency. Doing a little reading doesn't make us more qualified than any doc simply because we don't agree with him. There is a reason docs have control of the drugs. They see this happen all the time.
We have already dismissed the majority decision by going down this road to begin with. Unless opiates benefit you in some way, your story just confirms every belief every opiate phobic doc has. However it's not the pump, It's the opiates in general that make a sedentary life tolerable and the weight gain and all the symptoms are just the end result of living a sedentary life.
Good luck and at your next refill, ask your doc why he believes going back to orals at this point is a very bad idea and won't resolve the problems your having.
Swelling is not an uncommon side effect of intrathecal medications, significant high blood pressure is very uncommon. It is likely some of the side effects are not due to the pump at all but are due to inactivity and weight gain. Sweating can be a side effect of any opioid medication.
Ive had chronic pain for about ten years so I am not new to any of this. I have done alot of research on the side effects of dilaudid and everything that I have mentioned is a side effect of dialudid. When I was only on orals I did not have any of these problems. I just wanted to know if anyone else out there is where I am and what they did. Part of the reason for getting the pump was so I didnt have to take so many orals which my doc totally agreed with me but I just wish that he would have told me what could happen having dilaudid running into my spine constantly. Anyone else out there thnking of getting the pump should make sure that they ask about the side effects of everything. I made a big mistake by not asking more questions. I was so excited about the pump and trusted my doc to tell me everything that I just beleived in him to take care of me. Guess we learn something new everyday and go on from there. One day at a time.
Shoreline points out a lot of hard truths, and I've had to face down several of the issues myself. For me, I had the opposite problem with respect to weight gain. After being "skinny" all my life and battling with Chrohn's disease often enough to stay that way, I became obese two years after a car accident left me with a failed back. For me, that was 248 lbs. I was on high dose oral meds and sedentary = normal for me. I have other health issues that made the pump a dicey option for me personally...I was warned of every potential problem and that even if I got every potential benefit, I might only be buying myself a few years of improved quality of life. For me, getting off the oral meds while getting close to the pain relief they can bring was a compelling enough reason to take any chances on the pump.
I can't say it's been three years, but in a matter of months, I now weigh 205 lbs. I'm still in pain. When I started back with the physical therapy not long ago, after my initial exam, it was clear that every muscle in my body has atrophied to varying degrees, and we started with the most BASIC of exercises. I don't get excited about exercising, but if I'm honest with myself, I've never finished exercising and said to myself "I wish I had just stayed on the couch". I am also an insulin dependent diabetic with an insulin pump. It's so easy and tempting to just jack up the basal rate and eat what I want...and I still do that sometimes. I assure you, though, the misery level at 248 lbs. is so much greater than it is at 205 lbs., and I have to remind myself of that every day, as I know when I reach 180 lbs. I will be so much better off in every single way.
There are side effects with Dilaudid. I feel like giving up some days. It's not my fault that I'm in this situation. But, whether it's insulin, pain meds, pain itself, steroids, etc., that caused me to gain weight, I had to address it anyway. I definitely could eat whatever I wanted when I lived a "normal" life just six years ago, and my daily level of activity kept my weight in check. I can't do that anymore. I'm not trying to gang up on you, and I DO know what you are going through...at least with the weight gain, because it happened to me. I have not lost weight fast, nor have I not gained some back at times. I'm still struggling with it and have 25-30 lbs. to go, but I've seen so much improvement by losing that much already that I know I have to overcome the causes, whatever they are, and keep losing the weight. I hope you can find a way to do the same.
BTW, two years ago I would not have said any of this...nor did I even admit I was overweight. Most people sympathized with me and all my health issues, and helped me rationalize all the bad habits that I picked up, including smoking. I mean, I was miserable, I was a victim, so it became easy to excuse my behavior. If I had continued down that path and not changed my way of thinking, I would not be alive right now. That sounds like a stretch, but I believe it. Or, I'd be alive but wish I wasn't. I don't know how many years I have left, but I'm not going to quit living for years before I do actually die. That's a hard choice to make and to stick to when you are in chronic pain and your health continues to detiorate. But, it still is a choice. I pray for anyone and everyone who faces these issues, and while there are a lot of people in misery on this board, I am heartened and inspired by every single story I read that is supportive, uplifting, and/or describes a triumph against chronic pain, no matter how small it may seem to others. Good luck.
These are some hard things to say without sounding unkind, but you yourself state "This didn't happen on the oral meds". Dilaudid is Dilaudid, the only difference is orally you were taking much, much more. These are not side effects from the meds going into your intrathecal space. There are other choices than Dilaudid. You didn't mention your age, and I apologize in advance if I offend, but some of the symptoms sound like menopause. Even if you think you are too young it is worth talking to you GP or GYN. Never making a decision without researching it to death, I decided the pump was best for me. This board is invaluable for getting information, I hope you find answers and I hope I did not hurt you feelings
I do exercise everyday ok almost everyday. On my bad days of course I cant exercise but I still try to get up and do something. I have learnt through the years that not moving just makes me feel worse mentally. I have been trying to lose weight and have become very frustrated because of course everything is so much harder. I wasnt like really skinney but was comfortable with my weight before. I dont eat alot because of no appetite and force myself to eat small meals through the day. Im not going to stop now so getting others input does help. Makes me remeber that theres alot of us out there and Im sure all of us would love to have our old lives back. I do know that I have to work twice as hard in this life now than I had to in my old life. I guess Ive just hit another point in this life that Ill have to get past and keep moving on. Everytime I listen to someone else it helps. It really helps alot to hear from someone whos struggling in the same way. I wonder alot why is it that whenever I get past one thing another thing comes up. Sure does test me on why to keep going. Ive never had anything easy and maybe I am just getting tired of this living thing. Since the age of 14 Ive had about 14 surgeries. Seven of them for my back and the other seven for different things. Im a determined person and Ill just keep trying until I feel satisfied I guess. Im the kind of person who was always the caregiver and now I have to have to ask for help and Its really hard. I dont like being taken care of and try to do everything for myself which doesnt work like it used to. I worked in a hospital for nine years and truely loved my job and now even after all this time its hard for me to ask for help. We all deserve a little peice of our lives to feel sorry for ourselves. Im hoping reading about everyone elses problems that Ill look at myself and be happy with what I do have.
Makes me remember that theres alot of us out there and I'm sure all of us would love to have our old lives back.
I do know that I have to work twice as hard in this life now than I had to in my old life.
I wonder alot why is it that whenever I get past one thing another thing comes up.
I'm the kind of person who was always the caregiver and now I have to have to ask for help and Its really hard.
I'm hoping reading about everyone elses problems that I'll look at myself and be happy with what I do have.
I'm glad you responded! I have gotten a few replies regarding another issue I'm going through, a divorce, that really bothered me, but after a while I realized that most folks around here are really trying to help. Obviously, with an anonomous board like this, no one really knows for sure what someone else is truly going through, but we can generally identify with many of the issues and challenges we all face with chronic pain.
That's why I picked out most of your main points to quote in this reply. I think that 95% of folks who suffer with chronic pain have the exact same feelings, emotions, and experiences that you mentioned...I know I do. Occasionally I'll get the feeling that I'm really going to beat this setback, that I will get my old life back, and that I'm "in control" of the situation. That usually lasts maybe 10 minutes, and then I'm brought back to the reality of my life. I'm not in control of anything, and even if I thought I used to be, I never was in control. I've had to realize that these are the cards I've been dealt in life, and I can either make the best of it or give up. Just like you, there are days when I feel like giving up, when I just can't exercise, etc. But, also like you, being able to come here and read other's stories, be reminded, again, that we ARE NOT alone, and sometimes even vent a little bit, does help keep me grounded and grateful for what I do have...I wish you the best and hope better days are ahead! God bless you.
I also have the pain pump, it was inplanted october 2009. the first meds used were fentynal and ibivicain, im sure i mispelled, hopefully u get the idea. it started ok, but started getting some side effects that were intolerable, especially itching w/ fentynal, and my legs felt very heavy w/ ibivicain. so we recently switched to dilaudid, i get more side effects than relief, i also have gained weight and i do pretty much the same thing everyday to keep moving, i am also starting to get some breathing problems since my last pump adjust 2 wks ago, i feel crappy all the time and dont want to do anything, i also get alot of nausia that can be unbearable. i did better on orals and only made the decision for the pump implant because i had concerns with my liver and kidneys,there healthy now but oral pain meds can reak havoc on ur kidneys and liver. as for now i am not happy w/ this pain pump, i can tolerate some pain, but when i can only do things for about an hour, then have to stop because of pain, that doesnt work for me. now pain doc wont give me anymore pain meds, not even for break through pain. not sure what i am going to do, but i wish u the best of luck with ur situation
Need advice asap
i have been seeing the same pain doc for 10 yrs, i had a pain pump put in on oct. 8 2009, i have chronic pain from a fusion surgery done in 1999 of L-5 and have not been right since. i started with fentanyl and ibivcain in the pump, went ok for a little while then started having some probs, like constant itching and legs feeling like lead, so switched to dilaudid a month ago, getting lil pain relief and can not deal with nausia, feeling crappy and tired and just low all the time and i can not do moraphine. i have told my doc how it makes me feel but it seems it doesnt matter because now he took away all my break thru pain meds.
b4 the pump i requested an mri be done so i would know all that was going on with my back cuz over the years i have been getting progressivly worse. they found 3 bulging disc, spinal stenosis, radiculophy, and i also have a pinched nerve somewhere, i read in a post about how god frorbid u ask ur doc for a break thru pain med that helps. should i change docs???