morphine such a hassle - any alternatives ?

[donintn]

I am a 53 yo male, diagnosed with ankylosing spondylitis when I was 20. My spine has been totally fused for decades now. I have had both of my hips replaced and actually is getting to where I need one of those replaced again (1st hip was done in 1992, 2nd around 1998). As I age my body is wearing out and I now have shoulder pain to the point where I can't go thru a drive thru as I can't reach out to get the food or pay them without pretty intensive pain and my knees kill me etc etc etc.
While I have tried to stay active and pretty much live a normal lifestyle, there has obviously been quite a bit of chronic pain involved. As I have had this since I was 20, there has not been a whole lot I hadn't tried, tho for the last decade I have been on morphine except for about a year so there may be some new medicines I have not tried yet.
I was actually reluctant to go on morphine at first, and was only prescribed it because it was cheap as I was going to the V.A. hospital at the time, but my preconceived notions about morphine proved to be false and turned out to be sort of a "miracle" drug as I once again resumed pretty much normal activities.
About 1 1/2 years ago I also started taking adderall to help with opiate fatigue.
Tho I still have many aches and pains, the morphine and adderall allow me to live my life. When I was off of it for a period of time, I basically sat on the couch or lied in bed all day due to pain.
I could tell a few horror stories about my health care that most people would not believe, but I could write a book about them so let's just say my experience with doctors has not been that great. I think I am an easy going patient and will always pretty much try anything the doctor recommends. I never complain etc.
About 2 years ago, after about a year hiatus of taking just tramadol and sitting on the couch waiting for my time to be up (I am NOT suicidal - I just had no qualms about ridding myself of this body) I started going to a pain clinic that had a doctor that actually cared and listened to me when I said what worked and didn't work. Was one of the few doctors I have cared for in the past 30+ years. But of course the hospital we worked at did not renew his contract so he left the state. Knowing my past experiences, he did recommend another pain clinic that he thought would work out for me. So, I now go to that pain clinic.
Seems I am back to square one. While they do still prescribe the morphine and adderall, it sure seems like it is reluctantly; especially the adderall as they told me they do not prescribe that and I only get it because I was on it when I came to them. I have been there twice now and after my 1st visit it seems like basically they just want me in and out. As this has been my experience over the decades, I have come up with the theory that most do not like me as a patient because there isn't any money in me plus no matter what they do, i can't be "fixed" and will always have chronic pain. So over time I basically get pushed out and I believe a lot of that has to do with the morphine. Obviously the government keeps a keen eye on doctors writing morphine prescriptions so the doctor's themselves have seemed wary about long term use (my opinion- I could be wrong but you would not believe my experiences). And as most seem to answer to whatever healthcare group they are in, I am just not a profitable patient.
Sooooooooooo, sorry so long, tho my current medications allow me to live a "normal" lifestyle (at the moment I am pulling up carpet and fixing a wall - tho my shoulder and knees are killing me, but beats sitting on the couch), I think I can see the writing on the wall with my new doctors plus taking morphine has just become such a huge hassle, I am thinking I ought to see if there is anything else that could help me maintain a fairly "normal" lifestyle but that does not have the hassle of an opiod involved. I really don't care that I have to take a urine test every month now (I don't even drink), I really don;t care that I have to now bring in my bottles (oh, I take 15mg IR plus 15mg ER twice a day, plus tramadol up to 4x a day and 1 20mg adderall 1x day- tho I see that coming to an end shortly) so they can count my pills to insure I have not been selling them or whatever they count them for, but if I am traveling somewhere I have to make sure I am back in state for my appointment (I do not do well in cars, but believe it or not, I ride a motorcycle and it is A LOT less painful - obviously my previous dr was not too thrilled with this) or , like an idiot I had just got my monthly "refills" and opening up the bottle of the 15mg ER I dropped the bottle and all of the pills went all over the place. I ended up losing 8 of them, so 4 days worth, so now my last 4 days I will just go into maintenance mode and instead of taking them for the pain, I will be taking them spaced out enough so I don;t go thru withdrawals, which means I will be sitting on the couch for at least those 4 days due to pain.
If I were taking anything else not opiods, it would not be a problem, but it obviously is with an opiod.
It has just become such a hassle. I think I would settle for a little lesser "lifestyle" then to have to keep worrying about the morphine. I know it is silly, but what if there is a major disaster in my state and it just happens to come when I have maybe 4-5 days of medication left. Good luck going to a different doctor to get morphine, if I could even get there at all. So I would end up on forced withdrawal plus the pain. I know it is silly, but who knows.
There is just a stigma attached to taking morphine, surprisingly from many, many doctors, so I think it is time to get off of it and see if there happens to be anything new I might try.
Sorry for being so long. Any suggestions appreciated, tho I have tried pretty much every anti-inflammatory known to mankind as of maybe 4 years ago. Maybe someday I will share a story or 2 about the "great" healthcare I have received in my 30+ years of dealing with chronic pain. But those stories may even be longer. Obviously I am not a very big fan of our healthcare system. I can count on one hand the doctors who I thought really cared and tried to actually do something. Tho I do think at times it may have been my fault as I always just go along with the program and I should have spoken out a time or 2.
anyway. would LOVE an alternative to opiods if there is anything. I can wean myself off the morphine and will try anything.

[donintn]

goodadvicesuperbombmom. 1st, they actually keep women handcuffed while having a baby ? Is ironic, to me, that if most read that happening in any Muslim country they would talk about how backwards they were and some would use it as another excuse why we should go to war with them. Seems about as barbaric as one can get. It sure isn't the country I joined the military for way back when.
I do quite a bit of what is in your suggestions. I do need to do more stretching exercises, but trust me when I say one thing I don't do is just sit around. Doctors are always amazed at my strength and the things I do. Actually, being bored and missing it, I just volunteered to be a 8-10 year old baseball coach again, supposed to call the guy back today. While I do finally have some money to hire people to fix things around the house since  my youngest has graduated college and is now working (an emergency room nurse in San Antonio), while I don;t necessarily "enjoy" all of the work, I like to do it as it keeps me plenty active. I was digging trenches in the yard to lay drainage pipe until my wife decided we needed new carpet and then we found some water damage, so I am repairing that. I am digging about 80 yards of trench, 3 feet deep and 5" wide and will have to then lay the pipe and fill it with gravel - not bad for a guy with 2 fake hips in my opinion. But it keeps me moving. I am getting slower, but I am still moving. This is a bad time of year tho due to the big shifts in temperatures. While I don;t do cold well, my body does adapt, but when it is 60 one day and 30 the next, it tends to cause some fairly bad headaches and body pains.
I have had a few rhizotomies. I get these really pounding headaches that are cause by my neck. It can be from the weather or often from lying down and my head not propped up in a pretty exact position. I can only lie on my back and my head is about 10" or so off the bed, so I use 2 pillows which have to be propped up a certain way. If they happen to be off by even the smallest amount I am guessing it puts stress on the top of the spine which then causes some really severe headaches. So the dr. suggested a rhizotomy. I only had so-so results with it plus one very bad experience. The 1st time he did it, the entire left side of my skull went numb and was "tingly" for about a month, they ended up giving me some lyrica for that. Wasn't that big of a deal and I do think it may have helped with the headaches, but the weather had just warmed up so it was kind of tough to really tell. I started getting the headaches again about 6 months later so he tried it again. The last time was bad. It actually gave me a constant pounding headache. It was horrible and lasted for a good month. It was getting to the point where it was unbearable and was one of those times when I was thinking I was ready to go (I am NOT suicidal, it just wouldn't bother me one iota to go at those times)
The headaches did quit tho and I haven't wanted another rhizotomy since. As for sacroiliac injections, one pain doctor said he could not give them to me because he could not find a gap anywhere to put the needle, which led to a HUGE horror story, but about 8 months later another pain doctor did give me the injections (so I guess there was a gap after all). They really did not do much for me tho. I have often wondered, since my spine is totally fused, does that mean that every nerve in my body is pinched ? I wonder that because it can be strange how if they try something at some point, it often affects me in a totally different area.
I do agree on the mental aspect 100%. I became fascinated with quantum physics about a decade ago which then led me into looking into spirituality (not religion) While I am very, very bad about taking the time to meditate etc, I have come to firmly believe in the "science" of spirituality and now understand just how important our thoughts and what we think really are. A kind of example would be the placebo effect. Amit Goswami has some very interesting stuff one can listen to one youtube. A great primer would be his talk at Schumacker College if u are interested. The biggest thing it has done for me is made me understand that no matter how "bad" the pain is or my current limitations, I finally understand that it is only temporary, but a blink of an eye in the grand scheme of things as I am not my body. But that is a different long story.
Pool - I do have a pool I use when warm but do admit I have been too caught up in my ego to go to the local indoor pool on "senior" day to exercise. I am going to get over that and go do that as being in a pool does help.

[superbombmom]

Good Morning!  Preaching to the choir new friend.  First of all,Thank you from the bottom of my heart for being a brave man and enlisting in the military for this hopefully once again someday great nation of ours. That is something I don't think I have the guts for!  So as a Warrior, you must continue this fight.  I am currently fighting legislation that non violent incarcerated women are handcuffed to beds while in labor here in California.  They can't pace and get the baby down into proper position for normal natural delivery so we taxpayers are forced to pay for their Csections.  Criminal behavior in my book.  I'm a Direct Entry Midwife, trained and permitted in another State to open my own clinic and offer Well Woman Care and Natural Childbirth.  If I even listen to a baby's heart tones or measure a belly with a tape measure here in California; I go to jail.  The sense of it?  $$$$$$$$ for Insurance companies! Same all around.  All the medical Marijuana dispenseries in my town got shut down recently, lots of folks in jail.  Throw out your old stash when you find it, it will be moldy and can cause your system tons of problems.  Drug tested every month means avoid it until you can get off that train, you'll just be inviting trouble.  Drywalling with one arm?  Come on man!  You are going to get hurt and really be in a mess!!!  My degree is in Kinesiology with a focus on Health and Wellness.  I promise you, if you sit in your easy chair and visualize your body doing what it is you need to do, you will keep open the channels from your brain that will allow your muscles to fire when you are able to get up and around more comfortably. No matter what you have to be able to get in and out of bed.  So visualize that every single day you are alive.  That is essentially a basic squat.  Always visualize proper form, knees stay back behind toes, never let the knees pass over the toes.  Will be a challenge with a fused spine since a slight arch is needed for the last movement but you need to help your body figure out some compensation.  On good days hold onto a counter and sit back like you are going to sit in a chair, 5 to 10 times.  Walk around for 30 seconds after to flush the chemicals through.  When you get to the bed do the squat onto the bed, loop a towel under your knees and lift them up and around.  Can the VA or Medicare provide any Physical therapy?  Seems essential for your survival. Ah, the Adderal stigma! Working through that as we speak!  I was just prescribed something awesome for this shingles nightmare and it seems to do the same thing!  It's a drug used for neuritis pain, those nerves of yours MUST be in overdrive after all this time!  It's called Decadron, I have the generic called Dexamethasone.  I am just taking it for 5 days so i don't know of it's long term usability, but it worked a miracle in 24 hours.  I have been able to deal with my three little kids and grumpy husband despite the living hell I just lived through.  Maybe this could be a suitable alternative to the Adderal?  Just an idea. No more days of just sitting all day.  You must take little walks all day every day, seriously.  Access to a pool? Moving in the water is hugely beneficial, as is floating and taking some pressure off.  Studies show that people who have a place to go and friends to meet will provide them with a longer more fulfilled life. Time to step out of your comfort zone (HA!) mister, and find some other miserable folks to be around.  Try an old folks home exercise class!  Seriously, I used to teach aerobics to seniors in wheelchairs and wow!  What a group of inspirational people! You can't be old and hurt without being an extraordinary person, so step up and claim it.  You are extraordinary.  The good news is you live in one of the most gorgeous States we have.  Access to the AT trail?  (My favorite section is that that goes through Tennessee, I've hiked the whole bit).  Just park and bring a comfortable chair to the trailhead and sit.  Listen, smell, breathe, see, feel, cry , laugh, say hello to the passing hikers, visualize yourself aging peacefully.  It will do wonders for your self esteem and health.  No pain no gain is antiquated dear sir.  Pain means chill out and take it back a notch.  heating pads, ice packs, a sense of humor, going fishing with your buddies, a sweet lady to take to dinner....and finding a doctor that has your back.  A younger one who still has the goal of helping his or her patient.  My neighbors across the street have their retirement home on 20 acres in Tennesse waiting and I always sigh with envy when the sneak off for two months every year.  She's in chronic pain so let me ask her if she has any tips for good docs in your state.  Please find a kid in your hood that needs some guidance to help you.  Post a note at the grocery bulletin that you need someone to assist you in some handy man stuff.  Check Craigslist, this day and age people are looking for ANY extra work for not much $$$$.  You'll get there, but it seems like Morphine needs to get off the list.  My Pain Management doc wants to fry the nerves under a live Xray in my sacroilleac joint.  Maybe you can get a Pain blocker inserted into your spine?  He is Dr. Mozingo in Santa Barbara to do research on procedures available. I'm trying to avoid the procedure at all costs since he claims it only lasts a year since the nerves grow back.  I severed the quadricep that lifts the leg in the rockclimbing accident so I'm pretty clutzy and frying nerves seems a little risky.  I admire that you do all that you do but I really think recreational activities will help you more right now than your honeydo chores.  Please consider?

[donintn]

sorry so long again. Now I am back to work. Putting up some drywall, which is not too easy as I am one armed today as i can't lift my arm above my chest. No pain, no gain. I am going to see about getting a shot for that.

[donintn]

thanks for the reply. A few thoughts. As for the carpet work, not that I enjoy it, but I have been of a mind for the last 3 decades that it is better to suffer thru a little pain and stay active then get too comfortable. I go thru periods where I don;t do anything due to the pain level and do basically just sit/lie down during those periods, but I think it is better if I stay as active as possible - within reason of course. Would have been too easy to just sit in a chair and would have made me worse in the end.
Adderall - my new dr is not too thrilled about prescribing this to begin with. Personally, I think it has been a fantastic addition to my regimen, especially when coupled with the morphine. Like the morphine, adderall seems to have a stigma attached to it. I understand that it is not good to become dependent on a chemical to function, but personally with severe chronic pain, that is the least of my worries. All I know from experience is what keeps me active. If I had  listened to all of the doctors I would basically be sitting around the house, insuring not to "exert" myself too much. Instead, over the last 30+ years I have coached baseball, basketball and softball. I dig ditches, I paint my garage, take care of over an acre yard and all other things that come with owning a home, doing most of the work myself. When I tell a doctor what I have been up to I always get either scolded a bit or they are amazed at what I do. yet this is because I have stayed active and have not let the pain control my life, when possible. Yes I have down days, down weeks and once a down 18 months or so, but thanks to morphine and adderall I have always rebounded. So I am obviously biased.
I often wonder how the drs would feel about these drugs if they or someone they loved had to live with even half of the pain many of us go thru. I am sure they would be singing a different tune. Adderall is abused by college students so it now has a stigma attached to it. But mention fatigue to most doctors and they will explain how that is a reaction to the chronic pain - severe chronic pain causes fatigue - so in my opinion, why not combat that with a drug like adderall.
Marijuana- I have always read how it is very effective for chronic pain and have seen it mentioned often with ankylosing spondylitis. So, figuring I would give it a shot, I got some seeds and grew some (illegal in my state). Now I grew up in a small very liberal college town and have probably smoked more weed than most in my youth, but I have not smoked anything since my late 20's. It could have been just what I grew, but I did not like it. It did help quite a bit with my pain and I would have a brief burst of activity such as stretching , exercising etc, but after that burst was over I always ended up in a mild stupor and ended up just sitting around, plus it made me paranoid. I still have a bunch left over from what I grew years ago sitting around somewhere. Even if it did work, I get a urine test now once a month so if I did decide to try it again, I would have to be sure it worked well enough to replace the morphine as I would not get it anymore. So kind of risky with my previous experience.
Tramadol - personally I like it. As we all know, with severe chronic pain one has a tendency towards depression. All of my doctors think I am strange, but I have found it to be the best anti-depressant I have ever tried. Personally I do not see why everyone is always so surprised because while as with most drugs, they are not sure how it works, but they do know that it causes one to release serotonin - the same as prozac etc. Actually , wanting tramadol is how I got on morphine to begin with. After years of trying, I finally got into the V.A. pain clinic. Where I went, they contract it out to local physicians, but they have to go by the V.A. formulary. I must have been one of the 1st V.A. patients for this doctor, a woman (I only mention this as u will see) about 45 or so. We discussed things for a bit and we decided I would try tramadol, which at the time was a new drug, so still costly. She then left the room. She comes back in about 10 minutes, looking distraught, and then tells me that instead of tramadol, she is going to put me on morphine, and then literally breaks down crying. When she left the room, she had to go to the V.A. phramacy and discuss it with them. The V.A. pharmacy told her to put me on morphine - not a doctor. Reason - morphine is cheap, tramadol was expensive. So now as a patient I have to console my doctor....was pretty strange.
I no longer go to the V.A. - tho I have a whole bunch of stories about them, not to mention how in 2005 they forced disabled vets into Medicare, telling us we would lose our V.A. health benefits if we did not join. I figured they just wanted the monthly premium and tho I was paying over $400 a month for Blue Cross, ended up also on Medicare. A few months later I discovered the real reason they did this.
Now, by law, Medicare became my primary insurance and Blue Cross became my secondary - think about that for a second.
It does not take a genius to figure out who was responsible for this new law. By kicking disabled vets over to Medicare, the private health insurance is saving untold amounts of money. Most disabled vets have families, so carry private health insurance and i am sure we cost them billions.
So now we are passed off to the taxpayers and they save billions.
The next time u hear a politician stand up saying how Medicare is going broke, laugh at them because they are the ones who have driven it there. Now my opinion is it was deliberate, a win-win for them. First the private ins. co. saved billions, plus as we all know, a certain party wants to privatize health insurance and do away with medicare so this also added billions (I am guessing at that figure, but figure as disabled vets we do cost a pretty penny due to our health issues), helping drive Medicare into bankruptcy - so then they would "have" to privatize it.
The last part is only my opinion, but in todays world I am of the opinion if u want to know what is really going on, just follow the money as that is the only thing that matters anymore - which is why I am, not a profitable patient. Most doctors are now affiliated with health groups whose only purpose is profit. Even tho a doctor may care, they are forced to meet certain requirements such as see so many people a day etc.
So there is no upside with me. There isn't any money in just writing prescriptions plus they have the added "risk" of writing prescriptions for schedule II drugs for long periods which may invite government scrutiny - a lose-lose.
I have only come to this conclusion after 30+ years experience. I could be wrong, but is just my experience. As mentioned, doctors may care (not all, some are obviously just there for the money), but as u now pretty much have to be associated with a health care group to survive, they then have to fall into step, which means they must make a profit.
Not that Iu am cynical or anything :)
Is why I would love to get away from a drug that makes me dependent on doctors.
I wish I lived in a state where I could try marijuana again and not something home grown, but I do not see that happening here in Tennessee.
So, would love to find some combination of something where I am not dependent on a doctor's whim, and I have a horror story among horror stories about that.

[superbombmom]

Hi guy, so sorry to hear a person with a story so similar to my own.  I'm 40 so only 20 years into our shared story, mine started with a horrific rockclimbing accident that crushed me from top to bottom.  Never had a day of peace since.  Horrific car accident a year later. it goes on but I'm researching rashless shingles -, my newest nightmare so I'll move on.  I take 20 mg Adderall twice a day and talk about stigma! My husband is trying to say I'm Bi Polar because of it, not considering what chronic pain can do to a person's personality.I have Rx to Oxy, Vicodin, Percocet, Tramdol (YUK!!!! Rather die than take that awful stuff) Valium, Xanax and is there anythiing left? Oh yes, A muscle relaxer.  Like I said, I've been trough a lot. A cream that my Pain Management doc (out of network $300 a visit :( has made in a lab in NY and sent to me.  It has opiods in it so it doesn't have to go through my system to deliver the meds to my lower back.  It gives me a rash but takes the edge off. (Focused Pain Relief Phone [phone]). Try breaking your Adderal in half and take one half in the AM the other in the afternoon. Or ask for Vivanse, a more long acting form of it. Or an additional pill for the afternoon.  Morphine I asked for and he claims they don't prescribe that anymore.  Stand up and abruptly show the next doc your spinal fusion scars and your hip scars and mention diarrhea.   NO ONE wants to discuss diarrhea and they will shuffle you along with whatever you ask for right away, especially after the pants have abruptly come down!.  Let them know you want to modernize your Rx, please help you find a more suitable drug for your problems.   It is their job to help you, not to treat you like you are a crazed drug seeker and if you are gentle in that message and go in with an open heart it will help. Let a few tears out so they know you are truly doing all you can to survive. I guess a wobbly chin would work, probably not an act and I know you know what I mean. Medical Marijuana? Regular Marijuana? Edibles are deep and long acting.  A vaporizer will protect your lungs. Lots of short walks around the block all day every day no matter what.  Take a cane to make sure you don't fall and to beat off dogs you can't protect yourself from. Find a cool carved one at a Craft Fair. Get a subscription to Rolling Stone Mag to counter act your new image with a cane ;)  They have tons of old timer stuff you'll love and you might enjoy your new swag around the young crowd for knowing who's hip. No pun intended. No more fast food, bad for you!  I saw an old guy on a motorcycle with Handicapped license plates and it's still one of my favorite visions ever. Find a person needing to learn carpet ripping and wall fixing and have them help you in exchange for a work reference when they have fulfilled their Internship. Involve their parents to avoid weird stuff.  Stand tall and be proud, you are having a REAL HUMAN EXPERIENCE in this life and that is priceless.  God wouldn't lay all this on you if you couldn't handle it.  Also, look into Accupuncture, often covered by most Insurances, even State run ones.  Keep fishing! Best of luck.