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Posted 3/10/2009 7:44 PM (GMT 0)
Hello All,

I just got back from my appt with the pain clinic doc. I am kind of bumbed. I was hoping to elevate pain meds, I guess that's what I thought the pain clinic would do, but not so much, or at least at this point. My entire body is in excruciating pain today, has been, but today seems to be even worse, perhaps it's the stress I put on myself with issues like this.

I really liked the doctor, he was a very nice older man, who is basically retired, he just has this pain clinic that he runs 3 - 1/2 days a week at one of our hospitals. We talked for awhile, I explained my current situation to him, going through some personal stuff with work (yes, even though I am on disability I still have some loose ends to tie up at the office) that is very, very stressful. I had a very bad situation with an employee a couple of years ago that is still unsettled, I have to talk to lawyers and possibly have to go to court and stuff in May, so this is really not good for my condition. Anyway, after a long conversation we agreed that I would start a low dose of oxycontin!

Now that I am home and reading over this paperwork I am scared to death! I went for so many years without even taking pain meds. Seriously, I just asked for something for pain in June of 2008! This seems like such a huge leep, but I really want to get some kind of quality of life back. At this point I seriously cannot function, I can't go to the grocery store without feeling totally spent and my entire body feeling like a freight train has run over me.

Anyway, I really scared to start taking this! I wanted to know has anyone taken this or are you currently taking it? I'm not worried about becoming an addict, I'm worried about how it will make me feel and the side effects. I have gotten the script filled and I'm sitting here looking at the bottle, but just can't bring myself to take it. Why? What the hell am I so scared about?

Any info anyone has would be most appreciated.

Melissa

Posted 3/10/2009 8:34 PM (GMT 0)
I have been on oxycontin for almost 1 year now. I took it because of my severe nerve pain. It is an amazing drug because it can take the pain off from me. The only side effect is sleepliness. When I was on 15 mg, I could not stay awake. It was good on the night time because it helped me to sleep, but I could not function during the day time because of drowsiness. I am now on 5 mg and it was fine. I am not sleeply during the day. However, if you are taking the liquid one (oxynorm), it will defintely make you drowsy, but it's a fast pain reliever. It works within hour an half. I would say without oxycontin, I could not function well due to the nerve pain. Oh yes. There should be no alochol intake while you are on this medication.
Posted 3/11/2009 4:47 AM (GMT 0)
Omega,

Thank you so much for sharing your experience. We are expecting rain here today and the weather changed rather rapidly, it went from 82 degrees to 45 in a matter of a couple of hours. Weather change is one of the worst things that affects my pain, so, needless to say I have had a really rough day. I was going to wait until tomorrow to start the oxycon and my husband talked me into going ahead and starting it tonight. He asked me what I was so afraid of? I told him "this is high powered stuff, this is not something you play around with, it scares the hell out of me!" But I was hurting so bad I went ahead and took one and I'm SO glad I did, I have not had this much pain relief in so long I've forgotten what it feels like to feel this good, almost normal! The doctor started me on 20 mg twice a day, I will go back in 3 weeks and he said we will adjust it then if we need to. From the sound of it 20 mg is a substantial dose, I had no clue.

I was really, really worried about side affects, like getting sick to my stomach or feeling funny, like "feeling high" and I didn't want either of those. Thank God I don't, I feel normal, I just literally can say I almost have no pain! I have been so emotional today, I don't know if it's because the thought of going on this medication and I just never thought I would end up on something of this nature and then when it worked so good I am emotional because it's been so long since I've felt this good. It's such a relief knowing that there might be hope that I could possibly get a portion of my life back! It is totally amazing! I truly thought I had lost life as I knew it, but with this, I might just regain some portion of my life.

Thanks again.

Melissa
Posted 3/11/2009 12:31 PM (GMT 0)
Glad that it's working for you Melissa.  Hope you continue to feel well.

Posted 3/11/2009 12:54 PM (GMT 0)
Hi Melissa
I am glad that the drug works well on you too. It makes you feel like you are normal again. Remember, do not stop the medication suddently. It needs to be tapered down little by little. For me, the doc tapered it down 5 mg each time.
Posted 3/11/2009 3:15 PM (GMT 0)
Omega,

Thanks. Yes, my doc explained that too me. Kind of like prednisone I guess, this is definitely something you do not want to stop suddenly. He said people who do that are the ones who experience the "addiction" feelings we hear about. If tappered properly one should not feel as though they are additiced to this med.

Melissa
Posted 3/11/2009 4:13 PM (GMT 0)
Melissa,

I was given Oxycontin after my hysterectomy a few years ago. After just a few days I noticed that I was starting to look forward to the next one a little more than I should have. No one had told me not to quit cold turkey, so I did. That night was one of the worst I've ever spent. I had to sleep in the guest room, couldn't read, couldn't watch tv, couldn't relax, had the shakes, and such a need to take another one just to calm me down. I stuck it out though and have never taken another one. So I'm glad you know about the addictive nature of this drug. It was very scary! It also gave me empathy for addicts of any kind.

I hope it helps with your pain.

Pat
Posted 3/11/2009 7:27 PM (GMT 0)
Hi Pat,

Thanks for your input, these are the types of things I was wanting to know. And these are the types of things that scare me too death! Yes, they have told me not to stop it cold turkey, but it still scares me that I could possibly have these side effects. This is not a medicine that you want to mess around with from what I gathered this is a very sought after street drug as well, which blew my mind! The nurse at the pain clinic told me to keep it safe and nearly suggested keep it under lock and key because people steal this med and sell it on the street. She said people you would not expect do it, i.e. your kids, your brothers, sisters, etc. WOW! When I left the office I called my daughter to tell her how my appt went and told her they gave me a new pain med called oxy something (she's 21) she said "Mom, don't tell me they gave you oxycontin!" I was blown away that she even knew the name, apparently this is common knowledge on college campus'.

So, yes, while it helps me with my pain, it scares the hell out of me to be taking it!

Melissa
Posted 3/11/2009 7:39 PM (GMT 0)

Hi Melissa,

I was on OxyContin for about 10 years and it really made a difference in my quality of life. I started weaning it down last year and am now off it but am not being held by Darvocet. My pain doc is not on our insurance and we still owe them $500 back fees so it's not an option for me to go back to that clinic at $95 once a month.

So now I need to convince my internist to either prescribe me MSIR or Oxycodone. I'm in constant pain, partly from fibro but a lot because my lupus is active, which it hasn't been for the last few years. I started seeing a new rheumy over at Jefferson MC in Phila and I really like her but I don't know if she prescrbes pain meds or if I have to find another pain mgt. person.

I was able to walk, talk and function pretty well on OxyContin. It especially helped at night with leg pain that I get. I never had any side effects from it- and I'm on 11 different medications, so that's kind of amazing.

Take the OxyContin, maybe on a weekend or when you have 24 hrs off to see how it makes you feel. You may have to adjust your dose (with your doc) to find just how much is right for you. There is no reason to be in pain. The WHO (World Health Organization) named inadequate pain relief the #1 health problem in the world. It's ashame we're among them! Take care and good luck! Sandy

Posted 3/12/2009 4:14 AM (GMT 0)
Melissa,

Oxycontin is a highly addictive drug and the numbers of addicts are growing.  It was the drug of choice for Rush Limbaugh.

Check this site out.  I would personally never take it for any extended period of time.  A few while I was in the hospital but when I realized what I was taking I stopped.

http://www.addictionsearch.com/treatment_articles/article/oxycontin-addiction-abuse-and-treatment_16.html

I chose to endure my pain and focus on the treatment of the underlying cause which in my case was lupus and polymyositis.  Eventually that worked and that pain mostly went away.

Bill

Posted 3/12/2009 7:53 AM (GMT 0)
Conorsmom, Barb & Bill,

Thank you for your input. I have been on the med for a day and a half now. I gave in last night as it turned cold and rainy here and my pain level shot up to about an 8 in no time flat. I normally range around 5 to 6 on a good day. I have not been pain free in well over a year, probably longer, but just gave in this past June and asked my rheumy for something to help with the pain, that's when he gave me vicodin. That worked for a few months, then stopped, he then switched me over to norco, which I'm still taking, but that does not get my pain under control, again I average a 5-6 most days, somedays usually depending on the weather or my activity it can go between 8-10. I just have no quality of life left.

So, I went to the pain clinic at the advice of my gp, my rheumy would have written the script, but again he is 3 hrs away and this is stuff you can only get 30days supply at a time and have to pick up the prescription in person. I just don't want to have to drive 3 hrs every 30 days. So, pain clinic it is. I know this stuff can be addictive, but if you do it right and work with your doctors and tapper off, just like prednisone you will be fine, so I am told and so I have read. I just have to do something, I cannot continue to live like this any longer. Trust me, this was my last choice and something I never thought I would do. But at this point you do what you have to do.

Bill, if you don't mind me asking, what do you do to control your pain? I too realize the underlying problem is my lupus, fibro, raynauds and sjogrens, I'm on a ton of meds trying to manage that. When I am feeling half way descent I exercise as well. But the meds have not helped and with overwhelming fatigue and pain I can not exerecise. Any secrets you have that you can share are greatly appreciated. I hate taking all this medicine. I take plaquenil, prednisone, immuran, synthroid, prilosec, norco, restasis, xanax, effexor, topomax, omega 3, juice plus and now oxycontin.

Melissa
Posted 3/12/2009 1:38 PM (GMT 0)
Melissa,

I like Bill's directness. He said what I wanted to say but I was skirting around the issue. I do hope you'll be very careful with this dangerous drug. You have enough problems with pain, lupus, fibro, reynauds and sjogrens, and you don't need to add another serious problem to that mix. As much as I hate prednisone, an increase in your daily dose will help with your pain.

Pat
Posted 3/12/2009 1:44 PM (GMT 0)
Melissa,

My pain today is moderate and more related to arthritis and muscles. I have polymyositis and had an extreme case...lost 40 lbs of muscle in a week and started 2006 as a quadriplegic and could not swallow.  A high dose of pred took care of much of the inflammation that was causing very sharp joint and muscle pain but as my immune system was brought under control I did not have the same level of pain.

The past 3 years my pain has more been associated with my muscle and joint problems and I just have chosen not to take anything except occasional nsaids like alleve and I try to stay away from that as much as I can.  No real secret, I just endure the pain.   I also spent several months in hospitals and have done physical therapy to recover my strength and more recently deal with the pain in my back.  It was cause by muscle weakness and contraction.  It is better now but I still have mild, constant pain which I try to ignore.

Wish I could share a magic secret with you but I don't know any.  The only thing I can say is to stay as active as you can.  If you have a really bad day try to do some range of motion and stretching exercises..whatever you can.  It is so easy to say don't because you are tired.  If I had done that I would still be a bag of bones lying on my back in bed.  Life is so much better today.

Bill

Posted 3/12/2009 3:23 PM (GMT 0)
Pat & Bill,

Thank you so much for your support. Trust me, this is also a HUGE concern for me. The last thing in the world I need is to become an addict. I was one of the rare kids in school that didn't do drugs and really didn't drink, sure I'd have a beer here and there with my friends, but I just never went to parties and got drunk and high, I never had any interest. I saw what it could do to you, it was happening all around in me in school and at home with my brothers. It scared the hell out of me and I wanted no part of that kind of life. As I stated, I have a very high tolerance for pain and seriously did not ask for pain meds until this past JUne, and I think the only reason I did then was because I transferred out of my high paced life, I had just finished my degree and suddenly my brain wasn't going, going, going all the time and my body and brain finally said "hey...umm, we hurt, uh, really, really bad...HELP!" Up until that point I was so preoccupied with work and life I never stopped to realized just how bad of shape I was in.

I don't want to end up like Rush or Anna Nicole Smith, but I do want to get some kind of relief and I do want to be able to do simple things like go to the grocery store, go out to dinner with friends and family, you know the simply things in life without feeling like I just got hit by a truck. I am an educated person, my plan is to begin the oxycontin until I can find a better route to to elevate the pain and focus on a way of life that requires less medicine over all. My overall goal is to seriously get off of all this darn pain medicine! Seriously! I would love to try a tens unit or something of that nature, meditation, something. But until I can get back in the right state of mind and get to where I can focus enough to research things how can I find the right process?

My rheumy said as soon as my lupus is far enough under control, which it's not even close to at this point he wants me to begin an exercise program. I want to go to one outside the home, while I have a full gym in my home, with all the latest equipment, full wall of mirrors and all that, I just don't know that I will be as motivated here by myself. That is down the road. Before I got this sick, with this latest flare, I worked out twice a day, sometimes I became so addicted to that I would work out twice a day. I felt so good at that point in my life. Then all this crap happened that threw me into this flare and here I sit!

So, I do appreciate you all and your input and concerns. Please help me to keep that focus and not to loose focus of this. I really need individuals like you that will not sugar coat things and who will tell me if I begin to head in the wrong direction, as I DO NOT WANT that to happen and it could easily do so. I do have a loving family. My husband is here, watching me really close and my son and daughter as wel, but if I need a kick in the pants and you all see it, please I am open to it and would appreciate the honesty!

Melissa
Posted 3/12/2009 3:56 PM (GMT 0)
Melissa,

Ask your rheumy to refer you to a physical therapist. A good one will know how to start you out for a few minutes doing very very simple exercises and if you do that a couple of times a week, you'll be surprised how much more energy and strength you will regain. My first visit was no more than about 15 minutes of the most moderate leg lifts, arm lifts, etc. you can imagine. I didn't feel like I had accomplished anything, but I did. There are physical therapists who are familiar with lupus and ra, and unlike personal trainers, they know how to protect you from overdoing it and wearing you out. My physical therapist has given me exercises to do at home, as well.

Pat
Posted 3/14/2009 3:37 AM (GMT 0)
Melissa,
Oxycontin and me did not agree. i got it for post surgical pain. It can cause hyperness, and a real unpleasant anxiety in some people. It is extremely addicting and I refuse to take it. I will take demoral pills or the fentanyl patch. I had a little problem getting off the fentanyl patch and ended up increasig my klonopin for three days. I found the fentanyl to be as effective or more so, less abuse potental being a patch, and easier to control, you can remove the patch, you can't undo pills once you take them. The dermal solutions are easier on the liver and kidneys and give you a steady dose, rather than a whole lot in the beginning and tapering down at the end.

I hope that you can handle the oxycontin. I sawso many people inthe hospital struggling to get off that and neurontin and methadone and had serious health problems as a result of long term use.

Pain is a real problem and I wish docs would come up with decent narcotic solutions for those of us who can't tolerate a ton of acetaminafin or need stronger stuff. Methadone is another drug that I'm allergic to but woudn't take even if I weren't due to the risk of death in stopping it and its horrible effects on bone.

Take care and if you experience problems, please call the poison control center listed in your phone book and your doc. Some people have problems as the meds build up. Also, I would recommend a safe if there is any chance of children being around. I keep all my meds in a safe. Nothing i worse than seeing a child sick from taking your meds.

All this said. I'm glad it helps and don't give up on physical therapy. It can be fantastic and do much more than drugs ever could. If your therpaist isn't helping you enough and if you don't find yourself doing the exercises at home because they help so much, try a different center. You may be very pleasantly surprised. This summer, I get water excercises. I'm excited.

Take care and keep feeling better. You do need to be careful with this one. My aunt has had it ruin her life and her heart and health. Its a horrible horrible addiction.
Posted 3/15/2009 1:16 AM (GMT 0)
Melissa, Just wanted to add that I feel for you. I am taking about 4-5 7.5mg Lortabs a day. I have tried NSAIDs and although they due help with the pain and inflammation they all cause severe hives. I mean big huge red hot welts the size of my entire thigh, that itch burn and then hurt right to the bone. I didn't want to go the route of every increasing narcotic pain killers, but I truly (and my doctors) felt that I could not function and take care of two small children without some kind of pain relief. The pain is not gone, but it is tremendously lessened. I remember when I was only on Darvocetr, which did very little for me, how much I wished I could have just one week without pain. I remember needing a break from pain, the only problem is that once you get that break it so hard to say "well, I'm not doing much today, maybe I'll skip the pain meds and suffer today". I don't have any advise other then to talk it over with your doctors and make sure that they understand you and your concerns and that you completely understand their directions. If the oxycotin is for short term use only, then what is short term, what is the pain treatment plan after that? If you will need long term pain management(as so many of us do), then maybe there is a milder narcotic like Lortab or even a non-narcotic like Ulttram might be a better solution. I tried Ultram and it worked great for pain but it too gave me horrible hives. My prayers are with you and don't beat yourself up over just trying to get some relief.
Posted 3/16/2009 7:50 PM (GMT 0)
I have been very cautious about taking any narcotic pain meds. The last time I was in the hospital for severe infection and a major lupus flare my joint pain was the worst it's ever been. They gave me a Lortab and it didn't touch the pain. When they started hitting me with iv solumedrol, the pain disappeared. I hate the stuff, but pain meds do not control my pain and I HATE the way they make me feel! I am also terrified of becoming addicted. I've seen people I never dreamed would become addicted become so and have their lives turned upside down. Oh well, that's my 2 cents worth.
Judy
Posted 3/16/2009 11:20 PM (GMT 0)
Hi Melissa,

I have been reading your post for a few days trying to figure out how to respond to you. I am sorry you are having such a tough time but feel for you too. I have been in the same boat, as I also have similar issues at times with the Sjogrens and boy when they all flare, man you want to scream. And I noticed you are on Imuran so it's not like you can be on Prednisone right now. So I think you are doing what you feel is best. I did have a few questions for you, and its just from experience that I had with the Oxycontin. Are you on Oxycontin time released which is usually in a capsule? There is a pill form that usually also has ACETAMINOPHEN in it too that can be split if needed. I found those to be the best as if I don't need the full dose I don't have to take it. You could also just have him lower the the capsule dose if you are on the Ocycontin HCI pills and prescribe more of them to take one first in a lower dose and see how that works, and if you need one more you could take it.

You are already concerned about it and dealing with a pain clinic doctor who is monitoring how well you do. You are already sick and aware what this drug can do. But you are in pain and its not like you are out taking major amounts of drugs and acting as a junkie. I say you need to take care of yourself and I comment yourself for being cautious, continuing to be cautious as you are with both of your doctors and your family watching you. I commend you for wanting to live normal. Do what you need to and still watch for signs.

And also, feel better!!! If you need to talk, I am here.

Leta
Posted 3/17/2009 5:55 PM (GMT 0)
Leta ,

Thank you so much for your input and support, I cannot tell you how much it means to me to have others around me that can truly relate to what I am going through and who can listen and not judge. It is a HUGE relief to know someone is out there that understands!

The pain doctor wanted me to be put on the "time release" capsules, that said, when I went to get my prescription filled and got home and took my first dose I didn't think too much about it. But then a couple of days later I realized the "tablets" I have been taking cannot be time released as they are a solid "tablet" not a capsule. Either way, I'm fine with it, the medicine is working wonders for me! I feel SO much better with this medicine, it is like night and day, I have not felt this good in years. And feel normal, I do not get a "high" from it and so far I have had no side effects, so for me I feel that it must be something at this point in my life my body needs to survive. Perhaps this is my way of justifying taking it, I don't know, but either way I'm going to continue.

I am on 5mg of prednisone as well. You mentioned something about I must not be on prednisone since I am on the oxycon. Is there a reason you say this? Is there a side effect with taking both meds? My pain doc reviewed all the meds I am on and didn't say anything about it. I haven't seen my rheumy since I started the oxycon, but I did email him to let him know I've started it and I have an appt with him on Monday the 23rd. Surely, if there is a problem one of them will catch it.

Again, thank you for your support and input.

Melissa
Posted 3/17/2009 6:18 PM (GMT 0)
Hi Melissa,

I am glad you are doing much better. Wow such relief huh??? yeah Dancing around yet, well maybe a tad. wink I am glad you got the tablets. You can always split them then and try it to see if you want to take less. Now if so and you are doing well on less, you know you can take less. That is a plus, and if not, well than it is what it is for now and you keep trucking until you are better. I saw the prednisone and for some reason I thought you could not take that with Imuran but silly me was not thinking clearly so excuse my mistake.

If you need anything feel free to email me as it is listed under my profile.

Leta
Posted 3/18/2009 12:25 AM (GMT 0)
Hi Melissa:

I just wanted to let your know that oxycontin extended release comes in pill form. I take the extended release ones and the are pills. My doctor told me not to cut them or crush them as they will give you the full effect of the medication all a one time. Apparently, the pills take a long time to break down and it takes 12 hours for them to dissolve completely.

I'm glad that the medication is helping you. It's made a huge difference in my life. I too like you worry about addiction but I have so much pain I had to have something. I'm able to not just sit and cry over the pain. I can function to the best of my ability with it. I know many members here have encouraged you not to take them and to "endure the pain" the pain I mean. Don't feel bad that you can't "endure it " sometimes we just can't do that. As long as you follow your doctors directions and are aware of the chance of addiction I'd say you'll do just fine.

Wishing you the best always.

Barbara
Posted 3/18/2009 2:04 AM (GMT 0)
Thanks Barbara, I appreciate the info, especially knowing that the "pills" are extended release as well. I would not start cutting anything in half or anything of that means without talking to my pain doc, this medicine is not something I feel comfortable experimenting on my own with! And, now that you said that I do remember that he did tell me if I were to cut or break the pills I would experience getting the full dosage and could have a bad reaction. I am not looking for any type of a "high" and DO NOT want any type of side effect so I am taking it as prescribed.

I am just so happy to be able to have a part of my life back and to be able to function to somewhat of a normal degree again that I just cannot get this smile off my face! I am serious, you probably know since you are on this med too, but I just want to know why the hell it took someone so long to prescribe this for me??!! I have been in a constant flare since June and I have gotten no relief to this degree with no other medicine. People can judge me however they wish, I will take it with a grain of salt, but this is one medicine I intend to remain on, for my family as much as for myself.

Thanks again Barb. I hope the medicine continues to work as well for you as it is for me at this time!

Melissa
Posted 3/18/2009 4:52 PM (GMT 0)
Hi Melissa:

Sweetie I hope you weren't thinking I was suggesting you were trying to get a HIGH from this medication. I just wanted to mention that the pills were extended release. I thought you were thinking they had to be in capsule form.

I'm very happy for you that you're getting relief from the medication. I like you take the oxy and it's made a huge difference in my quality of life. I've been on it for sometime now and I can say that I have never taken anything extra or run out of my prescription early. I will say that I'm probably dependent on them but I'm certainly not addicted to them. There is a huge difference between dependent on and addicted to drugs.

I agree with you it's made a huge difference in my ability to do things with my family. I'm so sick and have so much going on with me that I'll take any piece of sunshine I can get. I hope you continue to do well and it and I wish you bright, happy, fun filled days with your family.

Take care,
Barb
Posted 3/19/2009 12:34 AM (GMT 0)
Barb,

Oh no, not at all. Some people think that's what we are out for, I really don't care what others think anymore. But I seriously would stop taking it if I took it and got that "high" feeling. I'm just tickled pink that I feel normal when I take it and am getting relief.

I totally agree with your statement about being dependant vs. addicted, they are two totally different things indeed. I'm sure I am in the same position and have no problem with it, if that's what it takes to control my disease and the pain my body feels.

Hugs,

Melissa
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