Questions from a young sufferer

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BrokenJen
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/20/2009 6:47 PM (GMT -7)   

Hi everyone. I have been lurking for a while, and I feel for each and every one of you.
I am 24 and have had major back issues for nearly 5 years. To date I am told I have bulging, herniated, degenerative discs from my skull to my butt. I also have Spondylolysis in my lowest vertebrae.
I live thru daily pain, but occasionally experience some of the most horrible, literally paralyzing pain imaginable. I've had 4 of those episodes in the last 5 years, and if I so much as breathe the wrong way, I could have another.
I have seen more specialists than I can count. None of whom I continue to see, other than my Pain Clinic doctor, who I see weekly. He has had me try many medications, and 2 different kinds of nerve blocks. The block did nothing. Same with 99% of the meds we have tried. To date, all that works is Oxycontin. We have found nothing for breakthru pain. OxyIR, and Percocet for whatever reason don't work. Mine you I don't take a high dose, but that's the reason for my post.

I experience the worst of my pain at work. Thus, I only feel the need to medicate while working. I thought doing it that way would ward of the possibility of becoming dependent. But lately I have required so much to be comfortable, I have noticed withdrawal symptoms on my days off. My PM doc suggested taking my Oxy twice a day, work or no work in the hopes that being constantly medicated would prevent the really bad pain, and make dealing with what I have easier. But, twice a day isn't enough. Rather, twice a work shift isn't enough. 30mg of Oxycontin takes the edge off for 4 hours if I'm lucky. Then the tears come. I found myself taking 3 doses in 8 hours one day. The pain was just too much.

Anyway, this is becoming a novel. I am interested to know the doses and schedules of those taking Oxycontin. How long does it work for you? Do you need another full dose when it wears off? What do you take for breakthru?
And for those out there who are as resistant as I when it comes to meds actually working, what have you found that does provide relief? Were you lucky enough to find something for breakthru too? Please feel free to PM me if you would rather not share with the world.

Thanks in advance.


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/21/2009 6:50 AM (GMT -7)   
The reason your feeling good for the first 4 hours is because OC releases about 30 percent of the medication immediatly, but even that makes no sense if you say oxy ir or percecet doesnt work, because thats exactly what it is. Your def going to withdraw without medication, no doubt. its something you need to take a certain times, not when you feel pain, thats what breakthru pain is for. everyone uses different doses. I was taking up till 4 months ago 160mg of OC and 150mg of percocet a day. so 310mg of oxycodone all together. but thats a whole lot. You gotta ind what works for you.

Frenchdude
New Member


Date Joined May 2009
Total Posts : 17
   Posted 5/21/2009 8:50 AM (GMT -7)   
Brokenjen,
 
 you are tough and brave to work with such pain. I, also have back problems 3 disc herniations and some arthrose. It's been 2 years now (8 with chronic pain altogether, just 2 with the back), by far the worse of my life.
 
 Coincidentally, Oxycontin is the only med that has work for me too so far and believe me, I have tried a whole slew of them so far (Meth, fentanyl etc.).
 
I am no expert, but from what I can gather from my own experience, all these meds come from the same component: Codeine (hence the CO in all of them). So having the same molecule, if you take one of them for breakthru pain and the dose of the latter happens to be much less than your long acting one (oxy), you are not likely to feel the difference.
 
It is funny though how we go through almost the same process with meds. I, also, used to take oxy just occasionally, so I would not become tolerant to it, just like you. However, both ways have trade-offs.
 
The upside of this is that like I just said, you can take it longer since it's on and off, your body will not get used to it, but on the other hand you subject yourself to mini withdrawal symptom stints wich can mess with your mind and body. Some day you are fine and some day some you feel sick and in excruciable pain. Not to good for the spirits.
 
you take it round the clock, chances are, you will be less likely to suffer useless breakthru episodes in between and for a while, you'll be okay. The downside is that you are most likely to become tolerant and having therefore to increase your dose eventually. At some point in the future, you will reach a dosage which will be the limit for that very drug and then you will have to swich to another one. How long will it take for you to become tolerant? That a million dollard question. Everybody reacts differently. All I know is that, from my experience again, Oxy is a nasty one to come off of. Worse than anything I have experienced.
 
You have to weigh in the pros and cons of it and choose which one is most convenient for you. Unfortunately, with CP and meds, there are no miracle recipes. Just a lesser of two evils.
 
For breakthrus, Have you tried Hydromorphone, or hydrocodone (more potent plain codeine).
 
Let me know.
 
Frenchdude.
 
 

modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/21/2009 9:12 AM (GMT -7)   
Hello BrokenJen,

I had tears in my eyes reading your post. You are way, way too young to be having all of those back problems. Your story sounds exactly like mine did when things went south in 1985. I've been dealing with it since then.

In one job, I went to my employer and requested a specially designed orthopedic office chair to make sitting more bearable. They declined. So I went out and bought one myself and had it delivered to work. about a week later the head HR person came by and wanted the receipt for the chair because, she said, "they have to buy it". That really helped me control some of the medication requirement.

I have tried all sorts of pain meds and for me and lots of other back pain sufferers, oxycodone is the drug of choice, the gold standard of effectiveness. Oxycodone in any format be it percocet, oxycontin, oxycodone IR it's all the same basic narcotic component. The difference is how it is delivered. If you are taking both oxycontin (ER) and oxycodone IR your doc has to balance the two so that the IR is really effective. For example, suppose you were taking Oxycontin 30 mg twice a day, a breakthrough med of oxycodone 5 or 10 mg proabably wouldn't be effective because your tolerance would be based on the higher Oxycontiin levels. In that case a breakthrough dose of upwards of 20 or 30 mg. of oxycodone IR might be necessary to control the peak pain levels. You and your doc would have to experiment to find the right combination. Please remember that I am not a doctor, this is just from my experience. I have been there.

It is perfectly normal to experience the onset of withdrawal at times when you have not taken any med or not as much as previously. That's just the nature of the beast. I do not like the feeling of being controlled by the med. That is, having to take one to stave off the withdrawal symptoms, not because of pain. But in the last 25 years I have not found a way around that. I also do not like the ramp up required because your body's tolerance to oxycodone builds over time and progressively higher and higher doses are required for the same relief. I have up to the max and back down at least 4 times. The coming down is the hard part. Then you start all over again. I call it the opiod roller coaster.

The only other procedure I have found to be effective for me is nerve lesioning. Actual killing of selected nerves. There are several methods but the one that worked best for me was the chemical injection at the nerve site. I have dulled a good portion of my lower spinal pain that way. Now it has worked its way up the spine but that is because I am fused from L2-S1. That accelerates the problems above the fusion mass. What fun!!

Let me know if I can further brighten your day! Feel free to email me directly if you wish to talk off line.

Modelmaker
Degenerative disc disease, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 5/21/2009 4:36 PM (GMT -7)   
I would suggest that you talk to your doctor about regular dosing and that if you're losing your relief after about 8 hours, you may want to ask to go to a 3x per day schedule. I was having trouble at work after about 8-10 hours, after discussion with my doctor she agreed that it was better to have me with an extra dose of the long acting per day rather than to be taking more breakthrough. The more than you can keep it under control the less that you will have to take at one time and that will prevent you from having to take 3 doses that close together.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 5/21/2009 10:26 PM (GMT -7)   
BrokenJen
I agree with modelmaker, you are just to young to have all these back problems! I have been on Oxycontin for many many years,  and I take it twice a day 6 am and 6pm round the clock every day of the year, and I take percocet  for break through.  Prior to the Oxycontin I was taking Vicodin and Vicoprofen, but I was taking so much of it and so often, the Oxycontin is so much better! And when they started me on Baclofen for the muscle spasms that also helps with controling the pain! I don't worry about the physical dependence of the medication,  there are allot of medications your body can become physically dependent on, allot of BP meds like Beta Blockers you just can't stop taking them, the Baclofen I take, is another one, anybody take high does prednisone? you have to be weaned off of that one!  There are so many medications that one can take, that their body becomes physically dependent on! The thing is,  some of them don't let you know your dependent on them, not like pain meds do! I know if I miss a dose of my Oxycontin, 8 or 9 hours later, I am pacing the floor and am in excruciating pain! But if I miss my BP meds I might not feel it, but if I took my BP it might be extremely high, and if I continued to not take it, I could possibly suffer a stroke!  So looking at the bright side of it , at least with the pain meds they let you know that you've  missed your normal scheduled dose! Where as alot of other meds don't and some of those can cause serious damage to you if you miss taking them! Something to think about anyway!
Good luck to you!
 
White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/21/2009 11:27 PM (GMT -7)   
Hi Jen and welcome!!

At the risk of sounding like a broken record...I too am sorry for your suffering. There's not much I can add to what others have said so well. I also take Oxycontin twice/day...6AM&6PM..with 4 percocets/day for breakthru. It works fairly well for me, or at least as well as it's going to get. We will never be pain free unless the source of pain is "fixed" but the hope is we can get enough relief to be able to tolerate the pain.

Please feel free to ask any questions and we'll be happy to share our experience and what we know. Also, come join our Koffee Klatch daily. It's a small bit of time when we have some fun and a few laughs to take our mind off of the pain.

Warmly,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 5/22/2009 4:35 AM (GMT -7)   
Jen,

I'm sorry for what you are going through. I only take the percocet four or five times a day. That is what works for me. I tried the oxycontin and morphine too, but I was taking the percocet for break through meds in between the oxy. So, I figured, why not just take the percocets alone. So that's what I did and the percocets control my pain fairly well. Of course when I have fibro flares, that's a different story altogether.

But anyway, I hope you find answers to your questions here. You have gotten some really good responses so far. I wish you luck. Sorry I couldn't have helped you more.

Gentle Hugs,

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 5/22/2009 9:23 AM (GMT -7)   
 
 
Broken Jen,
Welcome to our little family...You are where you should be.  We all have our own stories so go through the old posts...it is a wealth of info.  You are so young to be going through this....I was young when mine started and I am now 42.  2 back surgeries and countless procedures later I still am in pain....will be forever I guess.  I would definitley talk to your Doc about the meds.  Taking them one day, then not the next isn't a good idea....You want to keep the peaks and valleys on an even keel...then your pain will be less and less.  Try it and see what happens....Good luck...
 
Me

 I hate Boats!!!!
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/15 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 5mg. 2X in the morning
                                                                    

 


modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/22/2009 10:47 AM (GMT -7)   
Hi BrokenJen,

Here is a post I sent to another in our group. Thought it might be helpful if you haven't seen it:

Hello Oxy,

Oh boy could we talk for hours on this one. I have been on and off and on oxycodone in all of its forms for many years. It is the ONLY pain med that works to relieve my back pain. I've been fighting the pain monster since 1985 so I speak from some experience.

For purposes of this response I will refer to oxy meaning oxycodone in any form be it oxycodone IR, oxcodone ER, Oxycontin, Percocet, Percodan etc. Any of them. Same basic med and problem.

It is easy to slide into oxy because it is so effective but also because it builds tolerance in your system so easily and quickly. Also because the withdrawal symptoms are so nasty and will start so quickly after the last dose of oxy wears off. As Frenchdude said, it is entirely normal to take something that stops the pain and therefore makes you feel better. There is, however, a subtle difference between that feeling and the feeling that comes from taking just a LITTLE bit more than you need to stop the pain and that is the feeling of euphoria. There in lies the problem. You MUST stick to a tightly controlled regimen when taking oxy. Take just enough to make the pain bearable but not so much you get the euphoria. Learn to tell the difference.

Even with this, you will eventually reach the point where your tolerance will require a higher and higher dosage to find that careful point. Just go at it very, very, slowly. It is better to feel some pain, sit down, rest, whatever you have to do to avoid taking another dose right then. That will extend the time between the ramp ups. With the onset of pain the oxy should NOT be the first thing you grab. Find other pain meds (Celebrex, aspirin, Aleve, Advil, etc.) whatever will provide any amount of relief first. Save the big gun for big pain. If you don't, the big gun won't work for you when you need it most.

Having said all of that, you will eventually ramp up to a point where it may be best to back off, let the oxy clear out of your system and start all over again. I call it the oxy roller coaster! But as others have said, come down GRADUALLY. Don't try to be a hero and stop abruptly. It is not only ugly but it is dangerous to your system. Set up a taper off schedule that is flexible so you can control how fast you come down. Fast enough to be meaningful but not so fast that you have bad withdrawal symptoms. It takes a great deal of self control not to grab the oxy to stop the withdrawal which it will do very nicely. Learn to tolerate some of it. You will be stronger for it ultimately. If you can get to zero, GREAT!! The longer you can avoid taking any oxy the better you will be. But understand that you will probably never reset your tolerance to zero. There is a great deal of discussion in the medical community about this issue. The bottom line seems to be that once you have taken oxy on a long term basis, there is some floor level of tolerance that gets established even if you can quit altogether. That means if you resume the oxy at some point you will be taking a higher level initially because of this residual tolerance left behind. The severity of this problem varies widely with the individual and is not well understood.

If you feel like you do not have the self control to do what I just described, set up controls to your access to oxy. It could be your spouse, a close friend, agreement with a pharmacist to issue smaller quantities. In some way you need to stick to a plan. If you don't you will end up ramping yourself right up the slide. This is the very reason this med and others like it are so closely controlled. Some people just don't have the self control necessary to effectively deal with the medication. But if you can control it, oxy is a wonderfully effective pain reliever for many, like me, who have no other option for serious pain relief.

This got kind of long but it is important to understand the fire you are dealing with. This is not medical advice, just me revealing what has worked for me and how I have learned to manage the dangers of the drug.

Feel free to ask any questions. I'll do my best.

Modelmaker
Degenerative disc disease, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/22/2009 2:39 PM (GMT -7)   
Hi, BrokenJen,
I feel sad even writing that name! Like everyone, it's sad to see you in such pain at such a young age. And I don't think I've got much to add about medication except to find the best pain management doctor you can find and work closely with him/her. Trying to adapt things on your own may make it worse, not better.

One thing I wondered is what kind of work you do. You mentioned how you need more medication at work. You're young, and if you're in a career that's very physically demanding it may be a good time to reassess options. And like modelmaker mentioned, having the right chair and other "appliances" can help. I know I'd never have been able to manage my chronic neck problems without following the advice of a good PT. Speaking of which, things like PT, acupuncture, etc. aren't going to cure your problems, but they can also be helpful in managing pain. If I had the money I'd be getting acupuncture and weekly massages! Wouldn't cure my pain, but would help a bit.

I'm glad you joined us, but so sorry for all you're suffering.

PaLady

BrokenJen
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/22/2009 6:25 PM (GMT -7)   
I am a dog groomer. :) I love my job. I have been on modified work for almost a year now. Modified being small dogs only, so no heavy lifting or wrestling with stubborn big guys. I am on my feet all day, constantly moving. I find sitting stationary to be torture. I HAVE to keep moving. The thing about my job that I know is hurting me most is the stress. We are worked to death with no time for breaks. I do force myself to sit down when needed, but that puts me behind. So my 8.5 hour day sometimes turns to 10+ hours. Insane, I know. But, I refuse to give it up. I was off for 2 months last year due to my back and it just about killed me. I couldn't wait to go back. (I am in the midst of planning 2 weeks off for my back)
I know with the right combo of meds I can get thru my days, but my PM doc and I can't seem to find anything that works.

I had a really frightning day today. I took my typical dose of Oxy at 7am. 4 hours later I was hunched over in pain yet again, so I decided to try my remaining IRs. (Now, I don't know for sure if it was them or not, but I am assuming so.) 2 hours later I felt a very typical headache coming on, so I took some Advil. Well, within 20 minutes I was sweating buckets, and my stomache was turning. I lost my whole lunch, which only made my headache much worse. Now for the scary part.. my whole drive home, I was half asleep! I was beating myself up to stay awake! The moment I got home, I vomited some more and went straight to bed for 3 hours.
I have NEVER been thru anything like that before! Does that sound like a mild OD to anyone? We do have the flu going around here, but the onset of this was so quick.. My stomache is still upset, but is holding food and liquid again...

Post Edited (BrokenJen) : 5/22/2009 7:28:03 PM (GMT-6)


BrokenJen
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/22/2009 6:35 PM (GMT -7)   
Oh, and thank you all for your responces. I am not doing anything against doctors orders. He encourages me to test my dosages because he knows how resistant I am. Example - he gives me meds at the lowest dose (ie 5mg) so I can adjust up on my own to find what works. I did that with my Contins, and stopped at 30mg. But like I said, 3-4 hours after taking them, their effect is gone.
I see my PC doc on Tuesday, and will ask him if upping the dose will help with the length it works...
 
To those who use Contins, would you mind sharing your dosages and dosing scheduals?

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/22/2009 8:52 PM (GMT -7)   
Hi Jen,

I would also like to welcome you to HW. I can't help you too much Re: Oxycontin. I was on it for about a month, but I had a bad reaction to it & I never really got more than minimal relief from it. Certainly not enough to outweigh the negatives. When I was taking it, my doc started me a 2X a day, 12hrs apart. However, I found that it only lasted ~ 8 hrs (apparently a very common finding), and doc bumped me up to 3X a day, or every 8 hrs. Since then, I have been on many different pain medications - although almost all short acting, since the reaction I had to Oxycontin will probably extend to all ER pain medications, unless we had found a good dose & set it in stone. I'm in the process of trying one last med, but we have basically determined that I am completely resistant to any & all opioids (apparently my brain is lacking the proper opioid receptors). So now I am left looking into some less desirable treatments, since we eliminated all of the possible simple treatments long before I started on pain medication. I don't like any of my options at the moment, but they are what they are. I hope that you find the relief that you need!

Skeye

BrokenJen
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/22/2009 9:01 PM (GMT -7)   
What are your options? All I have left is Methadone... :(

-Jen

Sudden onset of chronic pain nearly 5 years ago.
Diagnosed with increasingly severe DDD, Spondylolysis at L5, many bulging discs from hips to skull and 2 herniated discs.
Current treatment - Oxycontin 30mg/x2 daily. (No BT meds found.) Amitriptyline 100mg/nightly for migraines. Related?
No surgical options to date.
Botox denied by Ontario's workers comp. Up next - Methadone.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/22/2009 9:31 PM (GMT -7)   
Ketamine infusions, lidocaine infusions, things like that. My doc is currently consulting with a PM guru & then we will decide the direction that we will take. But I am at the level of using experimental and rare/drastic treatments

In addition, I am working with a homeopathic MD, an acupuncturist/chinese herbalist, and craniosacral osteopath.

I should add that to the best of my knowledge, I am not a candidate for a pump or a stimulator.

Skeye

Post Edited (skeye) : 5/23/2009 5:28:12 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/22/2009 10:02 PM (GMT -7)   
Jen,
Interesting you're a dog groomer. There's someone advertising locally for help with that, but I know i couldn't physically do it. I'm also nearly 60 years old and that makes a huge difference.

Here's just my opinion; if you want to stay working, and minimizing your pain so you can do that, you may HAVE to learn to take breaks at work, and pace yourself. Otherwise you may find that no pain med is going to give you what you want, plus you may do more damage over the long haul. I guess maybe this is trying to pass down what some of us have learned the hard way. Sadly, you have a lot going on with your spine for such a young age, and some of it may not be cured - just managed. You may always have to work with the lighter, smaller dogs. Maybe you could develop a specialty that becomes your niche market that's more suited to some physical limitations.

Anyway, I wish you all the best. And there are always new medications and treatments being developed; that's why you want the best pm you can find - one that stays current on treatments. Some people here also have stim units (implants) and/or pain pump implants. I don't know if you're at that stage yet, it's just to keep in mind that you haven't tried everything.

BTW - I just finished watching the groomer challenge on Animal Planet!

PaLady

BrokenJen
New Member


Date Joined May 2009
Total Posts : 12
   Posted 5/27/2009 7:48 PM (GMT -7)   
Thank you all for your replies. My PM doc and I have decided to give Methadone a try. I will be starting a new post about it..

-Jen

Sudden onset of chronic pain nearly 5 years ago.
Diagnosed with increasingly severe DDD, Spondylolysis at L5, many bulging discs from hips to skull and 2 herniated discs.
Current treatment - Oxycontin 30mg/x2 daily. (No BT meds found.) Amitriptyline 100mg/nightly for migraines. Related?
No surgical options to date.
Botox denied by Ontario's workers comp. Up next - Methadone.

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