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Old 08-02-2011, 09:10 PM   #1
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Where to from here?

Hi all,

I should mention I am in Australia, so some of my med names may be a bit different to other countries (?) let me know if something doesn't make sense!

I have degenerative disc disease L2-S1, 3 broad based bulges, a protrusion at L4/5, bone spurs at L5 and facet joint and end plate degeneration.

I have been in continual pain for about 8 months now (so relatively not that long!) I've been on OxyContin for that time, being started on 15mg twice daily while also receiving pethediene injections (I was in hospital) and have gradually moved up to 40mg OxyContin twice a day, and OxyNorm (20mg) for breakthrough. This has seemed to work for the last 2 months or so.

However, I'm now finding that the pain breaks through daily at about 5pm - and I take meds at 8am and 8pm. My daily pain levels are between 6-7 when the OxyC is working, and if I take an OxyNorm, it will go down to about 5. Is this it? Is this the best I'm going to get? Should I expect to acheive better pain relief with a long acting med?

In addition to the pain not really being under control, I've really hit a plateau as far as improvement goes, and my pain levels seem to be increasing, not getting better.

I'm frustrated as hell, and I just don't know what to do now or where to go, what to try.

Can anyone suggest anything?

Last edited by missciss; 08-02-2011 at 09:13 PM. Reason: Edited as I left a number of words out!

 
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Old 08-03-2011, 05:20 PM   #2
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Re: Where to from here?

At 40mgs twice a day, you're still on a pretty low dose of Oxycontin. You could try one of 3 things:

1) Ask your doc to up your Oxycontin dose to 60mgs twice a day.

2) Take your current dose to an 8 hr. dosing schedule, same mgs. just every 8 hrs. as opposed to every 12.

3)Raise your Oxycontin to 60 mgs twice a day, and take a different breakthru med. I've not heard of Oxynorm, but I'm assuming its Oxycodone. I've always like to have 2 different types of narcotics for my pain, 2 that work on different pain centers in the brain, it gives me better coverage. Right now your taking the exact same thing for your LA and Breakthru....it's all working on the same pain center and tolerance can build up quickly.

These are just the things I would consider if I were you. When I switched from Oxycontin to MSContin 10 months ago I was on it, I was at 160mgs a day...but when Purdue changed their formula to make the Oxy less tamper-able with, they screwed up the med...it just didn't' work as well anymore and didn't last but about 4 to 6 hours. Lots of people had this same problem. When I started the MSContin we started at a lower dose and have raised it twice, I'm now only taking 120mgs MSContin (morphine) daily and use Percocet 10/325 for Breakthru, up to 6 a day if necessary. So there's my opinion, hope it helps.

Let us know how it turns out or what you decide to do.

kat

 
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Old 08-03-2011, 09:25 PM   #3
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Re: Where to from here?

Hi Kat,

That is excellent information and advice - thank you.

Yes, OxyNorm is Oxycodone. It is the same med, just a short acting one to boost pain relief. Not sure how often percocet if prescribed here?

I saw my doc today, I needed new scripts and some forms filled out. I have booked an extended appointment for next week to have a more detailed discussion about the overall approach to managing the pain.

How is MS Contin different to OxyContin? I'm a bit of a novice at all of this. Is it short acting or long acting? I have definitely been better on the LA meds.

I think my doc also wants me to do an inpatient pain clinic - however, I have been through inpatient rehab/physical therapy already this year. It did help, however, once I came out of that cosseted environment, (heavy meds, meals made, no cleaning/washing to do, no car travel) I found that as I tried to regain some semblance of a life, my pain gradually increased along with my activity. When I was in hospital all I had to do was lie down all day and go to two 1 hour physio sessions each day. It was definitely beneficial in learning some exercises and regaining some muscle tone, but was difficult to transfer into everyday life.

I've also joined a waiting list to see another pain management specialist. I'm currently also working with a psychologist who specialises in pain management. I'd rather do it this way, parallel with my life, than take a step out of my life and then try to integrate an inpatient experience into my life afterwards. Am I making sense?

Are there any other medications I could use for breakthrough pain? The thing is, I avoid taking the BT med when I really should, as I don't want to build a tolerance to it too quickly. If this turns out to be something I have ongoing/for life - what are my options? I don't want to just keep upping the doses but that looks like what I am going to have to do.

On the plus side, I have a great GP (general practitioner - I think in the US this would be the primary care physician?) who has been really helpful and cares about the health, wellbeing and comfort of his patients - so not all bad.

 
Old 08-04-2011, 08:28 PM   #4
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Re: Where to from here?

Well honestly, you're making some excellent choices and that's important. Having a good doc that you can rely on and not be intimidated by is very important. Your psychologist with PM exp. is great, I also see a psychologist w/PM expereince and it makes a very big difference. They GET IT, they don't expect you to work it all though and just be better, they know why it's not that easy.

Let's see, Oxycontin is solid Oxycodone, very potent. MSContin is morphine also very potent. Personally I think they work about the same, Oxy is supposed to be stronger than Morphine...but for me it's a pretty even exchange. They are both LA meds with 12 hr. dosing. Side effects are pretty much the same.

As for what else you can take for break through pain, the list is extensive here in the States, I'm not sure for you where you live. There is Dilaudid, Percocet, Percodan, Vicadin, oxycodone, Ultram, and many more combinations. The thing is many drugs although having different names are the same basic med....so it really boils down to what works best for you? And unfortunately that sometimes take trial and error. It's hard to think of one that I haven't tried throughout the years, but when you find what combination works,you stick with it.

As to what you do if this is a lifetime situation. Once again, it depends on the person and the problem. Are there surgical options? Are you willing to try them? I've had over 20 surgeries in the last 11 yrs or so....they've helped, not much choice in whether to have them or not...they were all necesary. I have at least 4 more major operations to look forward to...I"m just taking some time off! *s* My pain issues are not "fixable" they are manageable through surgeries, medication and other modalities. (swimming, heat and ice, certain RX gels, tens unit, things like this)

I've been doing this since I was 17 and am now 42.....I know that I'll have to deal with pain for the rest of my life, I've made my peace with that, it wasn't easy. Trust me, I'm not one of those folks that wish to live until their 80 or more. *l* So deciding what to do, how to do it, if it's right or not? Those are all things that each person has to decide for themselves. You're the one who has to live this life, so You're the one who has to decide. Haveing great doctors and supporting family and friends make a big difference. Don't ever think that you can do this journey alone...trust me on that.

I hope that things go well at your next appointment. Just voice your opinions and research clearly, and listen to your docs side....the 2 of you should be able to come up with a good plan on how to deal with this for now. *s* Don't think that it will be the plan for life, because as with everything in life, it is constantly changing. Just live for today and be thankful for each day that your pain is controlled and stable. Don't worry about the bad times until they're here and then you deal with them the same way, one day at a time.


Take care, stay strong, and I wish you well on this journey.

Kat

 
Old 08-05-2011, 08:11 AM   #5
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Re: Where to from here?

Hi Missciss...Welcome to the boards....You've gotten some great advice already...

I hope that you and your Dr. can go over some options at your next visit..I am very blessed to have a wonderful PM Dr. who works with me to live the best life possible with chronic pain...

I'm not quite sure if you don't like the Dr. where you are now and it's just about finding a better medicine and modality combination? Or you really don't like this Dr. and that is why you have an appt. to see another PM specialist...

As far as MSContin and Oxycontin....the easy way to know those two are by the 'contin'...which means continuous....So they are both Long Acting medicines...I take the MSContin but the generic form which is Morphine Sulfate ER (extended release)...exact same thing just generic...I switched from Oxycontin years back when the patent ran out on the generic so I couldn't afford it anymore...

And since you aren't in the US...as mentioned above...the names for some of the BT medicines might be different for you...or you may have other options that we don't have...

I actually switched from Percocet to OxyIR...which they are both Oxycodone Immediate Release...but the Percocet has Acetaminophen in it...and after a few years...it was starting to make me have nausea a lot of the time. So the OxyIR is 5mg...and just plain Oxycodone...and the way my Dr. writes my prescription...I am very flexible in the number that I can take when needed....as in 1-2, every 4 hours...maximum of 8 a day...But I don't usually take the max.....as a BT medicine is meant just for that...only breakthrough pain..

The key I think for those of us who are going to be having this chronic pain for years to come...is to have medicine as just one small part of our way to manage our pain..This helps keep the tolerance level down..I've only had to raise my dosage once in 2 years...

I also use daily walking 30-45 minutes a day, yoga/stretching, acupuncture, injections when needed, massage, aqua therapy, as well as I did see a counselor for awhile to get tools to manage my pain. I switched to all Organic foods which has helped with energy level and inflammation.

I also use a muscle relaxer..Flexeril..which really helps as the opiates are not directed at that type of pain.

I also used to be on Cymbalta...which is used off label for nerve pain..(there is also Lyrica or Neurontin too)...again...that works specifically for that type of pain..

And then I use a sleep medicine...This helps me tremendously as I need to switch positions each hour while sleeping...It's been so great for my energy level and pain levels the next day..We forget how crucial this really is to pain management...

So...a good PM Dr. is going to want to tackle the pain using a combination of modalities...this way, as I mentioned...you just aren't relying on one thing.

And of course there are injections and minor procedures to help with disc issues...or if needed...a fusion surgery. But the latter is certainly the last choice..and it's used more to help with a mechanical fix of the disc..but not to take away all the pain. For some it does...which is wonderful but it's good to be realistic going in.

Please keep us posted!

 
Old 08-05-2011, 07:40 PM   #6
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Re: Where to from here?

thanks for the info - great and encouraging that you haven't had to up your meds for an extended period of time, as that is one of my major concerns. I've had extended bouts of gastric pain in the past, but OxyContin wasn't around, and the drugs that I used certainly built up a tolerance quite quickly.

Sorry, I wasn't very clear about the docs...I saw my GP this week, and will see him again next week (he is my prescribing doc. As I live in a rural area, most care is delivered through local GPs). At my last visit he has referred me to see a PM specialist (I had seen one in the past when I was in hospital).

I think you are so right when it comes to thinking of meds as an element of the solution, rather that as the solution itself. In the first couple of weeks I thought of the meds in that way, I thought if I just take these everything will be ok and I can just go about my life. How wrong I was!

When you were in your acute stage - how did you get through so that you are able to walk/excerise now? I used to love to take my lovely little jack russell for a walk, I was very active and loved to be outside. My life has changed so much - I just want to have even a small piece of it back. I do force myself to do things, and go through phases of pushing through and past the pain in order to be able to do some things, and then regret it and pay for it for the following week.

BTW - what do you mean when you say Cymbalta is used 'off-label'. Does that mean there isn't any evidence?

thank you again for sharing your experience with me.

Miss C

 
Old 08-06-2011, 06:30 PM   #7
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Re: Where to from here?

Cymbalta is an SSRI Anti-Depressant, generally used for Depression, SAD, and sometimes Bi-Polar although it can cause manic phases in some patients. "Off lable" just means that they are now using it for conditions that it was not originally meant for.

kat

 
Old 08-09-2011, 06:52 PM   #8
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Re: Where to from here?

thanks Katlin09 - that's what I thought it meant but wasn't sure. It seems Cymbalta is used for this quite widely.

Well, I went to the GP yesterday and he recommended that I do an inpatient pain management program. The only problem I have with this is that it is so far removed from my day to day lifestyle. I did a two week PT rehab earlier this year (inpatient) and while I made a decent amount of prgoress, all I had to do was my physio sessions and rest. I was doped up to the eyeballs, didn't have to cook, clean, do washing etc. I found when I came out that once I started doing these things, my back went downhill again quite quickly.

I had an acute episode start on Friday night, and still every step I take is like a huge shockwave through my whole body - is this what nerve pain feels like? I'm still not really good at telling where/what the pain is coming from...nerves, muscles, bones, discs etc. I just know the general vicinity where it orginates, and that when I take a step it seems to 'echo' throughout my entire lower body. Doc recommended to take more OxyNorm 20mg (short acting oxycodone). He has prescribed up to three a day, but said if I need more to take up to 5. He knows I won't be silly with my meds. Still, when the pain is like this, OxyAnything doesn't touch it! If I lie down I can get some relief, but if I need to get up it is excruciating. Well, I've had this before and it settled down, and I imagine I will have it again. It is just a matter of time.

My mum is staying with me 4 days a week to help out, and I was just talking to her about my situation. She thinks that if I am still like this at the end of the year, I should get a 2nd opinion. But, I would need to make appointments now to get one by the end of the year. The surgeon I have seen previously is considered one of the top in his field, and the man you go to for 2nd opinions, so I guess that is why I haven't thought of doing this sooner. But my life has become absurd without my even realising it! So, it isback to bed for a few days, with the pain killers and ice/heat as appropriate.

The only thing I can think is that I seem to be getting worse, not better. I'm waiting to hear from the PM specialist's rooms about how soon I can get in to see him. Initially they said November, but my GP wrote an excellent referral, so hopefully I will get in a bit sooner.

MissC

 
Old 08-17-2011, 04:12 PM   #9
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Re: Where to from here?

UPDATE: last Sunday was admitted to hospital for emergency surgery to remove L4-5 disc. It was 1.5 days between being admitted to the ER and having the operation - the hardest days of my life so far. I didn't know it was possible for the human body to feel pain like that.

I'm still in hosp trying to get through to the pain team that taking Endone for breakthrough pain is useless when you're taking 100 mg OxyContin. I've lost a lot of the feeling to my foot - they said it may/may not come back.

Time will tell

Miss C

 
Old 08-18-2011, 10:08 AM   #10
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Re: Where to from here?

I hope you feel better soon. As I read this I was going to ask if you had a surgical consult yet and apparently that's what was needed!
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Old 08-18-2011, 10:52 AM   #11
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Re: Where to from here?

MisC, I hope your recovery goes well. Now you'll be entering a whole different phase of Chronic Pain Mgmt. post surgery.

Take care,

kat

 
Old 08-21-2011, 08:31 AM   #12
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Re: Where to from here?

Thanks all - pain is under control for now - but I am only lying in a hospital bed all day. They have increased my OxyContin and Cymbalta, and added Gabapentin. I expect to be going to rehab in the next 1-2 days. Then I know I'll start to feel it more.

Miss C

 
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