Oxycontin And Oxycodone For 18 Months. Spinal Injury, Dose Higher Now Not Working.. In Wheel Chair... Need Help

Reading some of these posts I feel I am reading about myself .. And I don't feel good about it because there are way to many of us suffering and not knowing what to do or say...

18 months ago I injured my spine and am now in a wheel chair unable to walk properly without my legs going into massive spasms and falling out from underneath me I cannot feel parts of my purple feet, my toes and feet are permanently curled inwards and I have no feeling in regions, very limited feeling in regions, or a sort of "spiderweb' pins and needles tickle feeling in different regions of my legs, thighs, hips, and groin region.

This is due mainly to my S1 nerve root being completely compressed as well as everything else in that region being compressed inflamed and drowning in scar tissue. Consequently I have had 2 surgeries 5 days apart and am about to go in for my 3rd and hopefully final surgery - an anterior lumbar interbody fusion....(Any one who has had this surgery is welcome to give input on their experience please).

I have been on oxy and Endone/oxynorm for 18 months... Last November I was admitted into hospital for a period of 6 weeks due to a condition called Cauda Equina which is losing the ability to empty my bladder without a catheter and move my bowel without having my body pumped full of laxatives every week... Subsequently I was put on a higher dose of all medications was introduced to new ones and had some of them cut all together... During my hospital stay on a few occasions I passed full 20mg oxy tabs through my bowel even up to 7-8 hours after taking them. This meant I was stuck in bed unable to move because I had no pain meds in my system by that stage. I felt like some sort of crazy person asking nurses and drs to check out the loo at my poop.... They did not believe it was possible and thought I was spitting them into the loo. complete BULL s*** they said what had happened is completely unheard of blah blah blah...

My problem now is I am living in such a way that I am barely able to leave my house without a great deal of help, my house is a pig sty and I am falling deeper and deeper into a hole thinking that I will be stuck like this FOREVER... Before my dose of oxy was changed to a higher one (meaning it was a different brand) I could most definitely go 9 - 12 hours before I was curled up into a ball crying... Now I am waking up at least every 3 hours as well as waking up in the morning in such horrible pain I wonder if I should end my life now so I don’t have to burden my loved ones with my horrible situation...

Waking up in such pain and then feeling that same severity of pain every 3 hours and pretty much living for my next dose of pills is no way to live at the age of 22!! I feel like it will never end.. I feel like no one dr will ever get it right for me because there is such a stigma around people with spinal injuries that often we are left unheard or feeling like drugo's... I in actual fact would rather be ripped off the damn things and have my meds changed to something less full on and have no pain then have to "live" this way.

I am begging anyone who has any advice for me to do so... So I can write down the correct questions for my next drs appointment and get the answers I need rather than the answers he wants to give (there is a difference) I'd really love that... I feel that if I go to my dr a little better prepared he will be more likely to help me change to different meds... I cannot stand it anymore.... If you need more info about my situation let me know… Thanks so much in advance.

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I am so very sorry, I can't imagine having to deal with this at such a very young age, when your life should just be full of hope and promise.

As to any help, what other medications have you tried?

Have you ever tried Fentanyl? It is available in several forms, such as a lollipop and as a time released patch that is changed every 48 to 72 hours, depending on someone's pain level.

It may be something you should talk to your doctor about, because it has helped many people with severe pain to get their quality of life back.

Learn more Fentanyl details here.

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I can understand and sympathize a lot with your current situation. I suffered a fractured pelvis and was stuck in bed for five months - in a 2 storey house - all alone except for my dog. Nothing could be done - just bedrest. I lost 17 pounds because I had no access to food most of the time.
Luckily, just before the accident I had just asked to be given a different primary care MD. The previous one was terrible, obviously didn't like me (or any women) and I wasn't afraid to complain.
The back/pelvis pain was horrible, but I was lucky that my new primary care physician seemed to care and I did get all the pain pills I needed. I think the fact that she DID care was the only thing that saved me. It sounds as if your MD 1) doesn't care about your pain or your emotional needs or 2) he/she may just not "like" you as a person. Yes, this does happen.
If it is possible for you to request or manage someway to get a different MD that may be the thing to do. Lets face it: There are too many MDs out there who should be trying to get rich selling used cars or hot tubs because they really don't like people very much. They may have the scientific knowledge but they're in the WRONG BUSINESS!
Good Medicine is caring by a doctor who is empathic and compassionate.
And when you're in pain that's exactly the kind of doctor you need! Its what you DESERVE as a human being!!!

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Thank you so much for your replies I so very much appreciate it! SoCalGalPD: I am so so sorry to hear what you have gone through and I can definitely empathise.. It sucks. Personally am trying to keep positive although I am lately having more bad days than good... Which is why I have reached out on here... I have considered changeing DRS many times but unfortunately due to the fact that this was a work injury I have to have what they are calling continuity of care...I call it a continuity of bad treatment and being left unheard... for many months now I have been pleading for my drs to work with me and each other to find a better pain management plan to no avail... I think I just need to go in there with my own research and pretty much tell them this is what I need... I NEVER asked to be put on these meds and why they gave me them at such a young age I'll never know because it is potentially going to cause a very long battle with getting off the stupid things! The first surgeon that I had (if you can call him that) who I have nicknamed dr frankenstein saw me as a quick buck and cut me open twice in 5 days only 6 weeks after my initial injury chucked me on some drugs and I have never seen him again... I now feel like this injury does not belong to me.. If I wasn't on work cover I personally would be managing things alot differently and going to other sources to get the help I feel I need to get out of the damn wheel chair. All I can do now is deal with what I have and prepare myself better when I do go to appointments so I can hopefully get things moving. Verwon: Yes I have taken it I had one patch on after surgery last year... I was so dosed up on meds I dont really remember it BUT I do remember feeling really sick getting a jab in the arm with anti nausea stuff having the patch ripped of and feeling better eventually.. I do think I should try it agin though because last time I had so many medications in my system it is no shock really that it made me sick... Now that I am not taking as many meds I am thinking about trying it again.. At the moment I am on Oxycontin 20mg in the morning 20mg at bed, Oxycodone 10mg 5 times a day, panamax as required, Gabapentin 300 mg 3 times a day, Clonaxapam 500mcg 3 times a day, and Amitriptyline 25mg at bed also for one week out of every month I am put on an anti inflamitry- due to longevity of my injury pain drs were worried about the amount of anti inflamitries I was taking - but if you ask me that is the least of my worries. I have been on other meds but they were trials while I was in hospital and cannot remember the names of them... Will look in my file to see. THANK YOU again I so appreciate your input... Being at home alone all the time often means you forget to vent and let go off some of your worries making for a very overwhelmed upset me!

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Hi destiny I really feel your pain.the pills that you see in your stools are what are called "ghosts" or basically pills that the outer shell has not been dissolved.this shouldn't be of any concern as they contain negligible amounts of medicine.if your pain is not resolved it means that the level of analgesia is not sufficient for you, not that your pills are leaving the body unprocessed.if you cannot tolerate the oxys then there are many other pain meds out there that can help you.a good PM doc is the best thing for anyone dealing with chronic pain, but remember to do your own research and ask questions!the best info to get on the internet is probably PDF files of government health origins.wikipedia is a decent guide if you just want the gist of things...and stay away from forums about addiction as many are full of rumors and other rubbish that can seriously harm people.stay strong and dont give up...

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Thank you Kronicpain, I really do appreciate that... I dont feel like a freak now that I know why the pills are "coming out" not dissolved! I am now extremely close to my surgery date and am really hoping that with my awesome, and incredibly kind surgeon some of these concerns that have been unheard with my standard Drs will now be revised and fixed.... I have read through a couple of "addiction" forums and quite frankly the prospect of it scares me half to death so I now choose not to read through that advice and to do it MY way.... I am trying so so hard to stay positive and I honestly believe the only thing thats keeping my head above water is the fact that I am going in for surgery.It really is my last hope to try and allienate some of this wretched pain and try to go on living in the most "normal" way possible. I will get my butt onto those websites you suggested and give myself a little more hope that everything is going to be ok! THANK YOU again every one keep yoiur advice flowing you give me a little more HOPE and when I'm down I do read through your advice again and again to reitorate to myself that I will get past this crater in the road!! :)

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Good on you for the positive outlook.and although it totally sucks to be injured at such a young age,it also means you have a much better chance of recovery.look forward to hearing how the surgery goes!all the best :)

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I have had two crushed legs from 1986 I feel you. The Dr. I have was great un til I said I wanted to go lower on meds because of a car accedent i had that messed up my BRAIN THEN IT ALL CHANGED HE STARTED THINKING THAT HE WAS TAKING ME DOWN ON MEDS IN FACT IT WAS ME> now that I now what happing to you say I would like to try somthing different my self Kadian works well and Durgesic patchs. the fittenal pops are so addicting you whout never give them up and say you don't hav a problum whith them so watch out. IT is always get on the table so when he touches you and it ddose hurt make dam sure you let him now yell if you need to if you have had your dr for some time they should now you are in aginizing pin and you should have a better quaity of life. hay I hurt so much now it aufel i have been with the same dr for 8 years and now he keeps droping me down on meds if not wright am looking for a seciond appenion that what has happened to me I hope some of what i said makes you feel better if you need to get a new doctor some are just not on the same page. YO YOUE FREND GOOD LUCK

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pipper too: Oh My goodness WOW!! Thank you so much for sharing your truly inspirational story with me! It truly makes me realise that there are way to many people feeling horrible and unbearable pain on a daily basis. You have definitely given me some new idea about medications that I will be sure to do some research on and talk to my Dr about! You do need to get a 2nd oppinion I got my 2nd opinion too late and by that time had already let some one do surgery on me who if I had gotten a 2nd oppinion on I wouldnt have let the surgeon touch me! Keep me posted on your life You have truly inspired me THANK YOU! Best of luck

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We have the same problem e-Mail me please my name is Cindy Lee we have a lot in common !

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Cindy Lee: How do I contact you privately? I am now 14 weeks post op from a double spinal fusion... Things are no better as I had hoped.... starting to feel like my life is crashing down around me... I know a fusion is a long recovery time but far out I thought I'd feel better than this......

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My name is Cindy~Lee I send you my healing angels ~<3 I broke my back at 32 I'm now 50..your story sounds so much like mine.If you care to chat have a friend to chat with I'm here for you my friend.
Hope to hear from you !!

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Hi- I don't know if this is even relevant... But, here goes... When I was put on Gabapentin (sp?) for my neuropathic pain (the pins & needles to stabbing, excruciating pain in your legs & feet), I became so horribly depressed, all I thought about, even dreamed about was a way to €Nd it all. Finally my Doctors put me on Cymbalta. It does take awhile to get up to the full 120 mg dose used for PAIN. This drug was made to treat pain! Not depression, PAIN! A side effect of the meds is patients, once at a full dose, tended to be less depressed. It takes awhile, however, to get there. You have to ramp up really, really slowly. Or you will have a bad experience on this medication. They just came out with a generic also. This medication saved my life. From the horrible, debilitating pain and from myself.

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I am not a Doc, but for me what worked was Morphine in high long acting doses. Only problem that I had was it keep me feeling tired and copy, but no pain. I was on total of 270mg You might need bigger

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My heart goes out to you, I am certainly not a religious person, but will pray for a miracle for you Hang in there and when you can’t try hanging in there again, and again!

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Re: Destiny (# 10)

I am so sorry for the terrible pain you're experincing. This is what I don't understand, I constantly hear about people being on huge amounts of pain meds years and years after surgeries and knee replacements. Why in God's name are these surgeries being performed when thousands are still having to be on pain meds, sometimes 20 years later? Shouldn't there be some kind of warning against these surgeries in JAMA? Like I know someone who had knee replacement ten years ago and is on morphine and methadone to this day, WHY? And so many young people who are in chronic pain from this Fibromaylgia? Come on, if they were in the pain they claim to be they'd be dead from the high blood pressure alone. Your blood pressure goes way up when your body is feeling pain. I do know from experience that the more pain meds you take the absolute worse your pain will become, this is a very real scientifically proven phenomena. I have what is equivalent to a broken back, spinal stenosis, arthritis, scoliosis and a cracked tail bone and I am an older person. I was once on 30 mg. of oxycodone, 3 times per day. When the pain got really bad I'd take two and the nerves in my back would start like kicking my spinal cord or something, like back labor if you were pregnant. I would scream in pain, cry non-stop and I'd take another pill and I'm telling you the pain became worse with each pill. I know someone who has been on pain meds for 20 years and they're like "I can't even move w/o my meds when I wake in the morning my pain is SO bad." Well, duh, of course you can't move w/o them I highly doubt you could function at anything w/o them. I'm not against pain meds at all for the right reasons but some people clearly abuse them and shouldn't even be on them.

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