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Back again, with my back pain, again.

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Unread 11-28-2011, 01:05 AM   #1
72daywmn
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Default Back again, with my back pain, again.

Hi again all. It's been a long time since I've been on the board here, mainly because I thought I'd achieved a reasonable level of pain control, but that seems gone now and I need some advice and information.

My *official* diagnosis is Disc herniations with spinal cord and nerve involvement at L4-L5 and L5-S1, peroneal nerve damage and a secondary diagnosis of chronic pain syndrome.


My current pain management doc is actually not a pain specialist but a family practitioner at our local small town clinic, and the "authorized treating physician" for the work comp back injury causing my intractable pain, but he has been quite compassionate and trying to get me to a decent level of pain control.
For more than 2 years before the WC finally was forced to pay for pain management, I had a P.A. (in small towns, they act as regular docs) prescribing 60 7.5/500 Lortab every 2 weeks, which left me at a steady 8-9 pain level all day with flares over the top, but it was all I had.

When I began seeing my current doc, he immediately put me on Morphine ER 15mg twice daily and we kept up-ing that dose until we reached 60mg twice daily, with 7.5/500 vicodin and 50mg Ultram each twice daily for breakthrough, until the morphine caused so much nausea I couldn't leave the bathroom or keep anything down at all.

So he switched to OxyContin ER 40mg twice daily, with 7.5 Percocet and 50mg Ultram twice daily for breakthrough. He increased the Oxy to my current dose of 80mg twice daily, with the same meds for breakthrough, and each time he ups the doses, I feel two things- #1, a cross of guilt and shame for needing that high a dose, with a reluctant acceptance of my current physical disabilities, and #2, a hope that maybe we've finally reached "it", the right levels of all meds.
I see the doc once every four weeks to refill meds, and
For a short while after each visit, usually 2-3 weeks, I feel as if maybe we're at the right dose, but then by the time its time to refill, I feel as if the current dose just isn't cutting it.

Right now I'm supposed to take 80mg OxyContin ER in the morning and 80mg OxyContin ER at night, with my two Percocet and two Ultram available at needed times throughout the day for the breakthrough pain. I've also got Lidoderm patches that helped a lot in the beginning but only sometimes now.
I told the doc at the last visit on November 9th that I feel as if I have somehow done something else to my back (though I am basically inactive and sedentary so I'm not sure what I could have possibly done) because my back feels worse and different than the regular pain I've been dealing with for more than 3 years.
I don't know if the 'baseline' meds of 80mg Oxy are what is not strong enough, or if my breakthrough pain is flaring up more than before, or if the breakthrough meds themselves are what are not strong enough, but where before the 2 Percocet and 2 Ultram each day for bt were ok, they are not now. It's only been 2 1/2 weeks since my last visit, when he gave me 60 Percocet, and I'm almost out ( 2 pills left), and even after taking them I still hurt, at about a 5-6 level. His (our) goal was to get my baseline at a 3/10, and although I can get that good of pain control about once a week, that is the exception not the rule.

When I began seeing this doc, I signed a pain contract, though since hes never urine tested me or questioned that I am taking the meds properly, I wonder if that wasn't just a formality required for him to cover his own butt for prescribing narcotics. Nevertheless, I am scared to contact him tomorrow about being out of Percocet, but I know I'll never make it until my next visit December 9th without something to control the pain.

My main questions are these-

1. Is it the baseline med (Oxy) that needs to be increased so I require less BT meds? Or do I need stronger, more or different BT meds? Or do both the baseline and BT meds need adjusted? I just don't know exactly how to explain the pain and situation to discuss it with the doc. In the past, he has just had me show him a chart of when I take my meds each day and the pain levels throughout the day, but I'm not sure that this is getting the correct treatments.

2. What is the strongest OxyContin ER dose, and what might be considered "average" or normal for my conditions? Like I said, I feel weird needing to go up in dose all of the time- it makes me feel strange because of the stigma associated with taking narcotic pain meds anyway, and though I've been going through this for more than 3 years, it is still hard for me to accept that I am only 39 years old, and will be in this condition and requiring pain meds for the rest of my life, (barring divine intervention or major medical or surgical breakthroughs). I also worry that at this rate, I will be at the maximum doses of everything soon, and there will be nothing else I can take, and then what will I do. Has anyone else dealt with these feelings? Why am I afraid to take the medications I clearly need? I think it's the need part that scares me.

Finally...since this is a work comp case, I have a court date on December 7th
which is a "Pre-Settlement Hearing Conference". They have previously offered 45k to settle. given that my pain meds themselves will likely cost in excess of $500 monthly, I feel like that is WAY too low an offer, and so far, my attorney tends to agree. However, I don't want to stretch this out much longer either. With Christmas around the corner, I'm more tempted to just take whatever they offer to get it over with (this will be my 4th Christmas without being able to afford any decent gifts for my kids - I know that it is not material goods that count, but still, I know we all want to be able to buy something nice for our kids. I'm not talking about any hundred dollar electronics, but even a 30 or 40 dollar something per kid would be nice.)
BUT, without being able to work or have insurance, I won't be able to afford the meds on my own either. Does anyone know if OxyContin and Percocet can be gotten through patient assistance programs?

Ok, I guess that's all for now. Boy do I miss this board, and the support of all of you!

Thanks in advance, and have a good week!
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Unread 11-28-2011, 11:57 AM   #2
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Hi 72daywmn,

Quote:
Originally Posted by 72daywmn View Post
1. Is it the baseline med (Oxy) that needs to be increased so I require less BT meds? Or do I need stronger, more or different BT meds? Or do both the baseline and BT meds need adjusted? I just don't know exactly how to explain the pain and situation to discuss it with the doc. In the past, he has just had me show him a chart of when I take my meds each day and the pain levels throughout the day, but I'm not sure that this is getting the correct treatments.
These are decisions for your doctor to make after you describe to him your pain and the effect it has on your day-to-day life. Review the articles that come up Google: talk doctor pain

The chart is a good idea for all chronic pain patients, whether their docs request/look at it or not.

Quote:
2. What is the strongest OxyContin ER dose, and what might be considered "average" or normal for my conditions? Like I said, I feel weird needing to go up in dose all of the time- it makes me feel strange because of the stigma associated with taking narcotic pain meds anyway, and though I've been going through this for more than 3 years, it is still hard for me to accept that I am only 39 years old, and will be in this condition and requiring pain meds for the rest of my life, (barring divine intervention or major medical or surgical breakthroughs). I also worry that at this rate, I will be at the maximum doses of everything soon, and there will be nothing else I can take, and then what will I do. Has anyone else dealt with these feelings? Why am I afraid to take the medications I clearly need? I think it's the need part that scares me.
With most opioid medications, medically there are no upper limits. Politically, however, is another story; some states (like WA) have actually legislated how much pain a person is "allowed" to have/be treated for (by legislating maximum levels of medications that can be prescribed). Let's not get me started...

The largest dose of oxycontin mfd. is 80 mg. They used to make a 160 mg., but again, politics stepped in and eliminated that. Doctors may still prescribe higher when medically justified. There are also other options, like fentanyl patches, implants (medication and/or electronic). (BTW, have you tried accupuncture? Google it for chronic pain). Another option is switching to methadone. Methadone carries some different risks than other opioids (requiring even closer monitoring during the phasing-in period - mrsD & I have both posted articles concerning benefits/risks of methadone) and unfortunately may also carry some stigmatic risks, however it's also different in how it works on pain control in the brain.
Quote:
Pain can be divided into two types of physiological explanations: nociceptive and neuropathic. Nociceptive pain is generally caused by tissue injury (somatic pain) or injury to internal organs (visceral pain). Neuropathic pain is caused by injury or insult to nerves in either the central nervous system or the peripheral body.

We are blessed with opiate receptors in our brains that allow our bodies to respond to opioid pain medications. The majority of these receptors are classified at mu and delta receptors and a smaller percentage are NMDA. Nociceptive pain is primarily mediated by the mu receptors and neuropathic pain by delta and NMDA receptors; morphine binds to mu receptors only, while methadone binds to mu, delta and NMDA. Morphine does an excellent job of treating many types of pain, but because of its ability to bind to 100% of opiate receptors, methadone may do it even better.
http://dying.about.com/od/opioidpain...doneVmorph.htm
Methadone is also extremely inexpensive.

All that said, while there are no upper limits with opioids, the higher the dose, the higher the risk for/of accidents and incidents. Vigilance and monitoring are imperative; opioids are never to be treated lightly (not implying you do).

There is one other thing I can think of at the moment that I think is worth looking into, but that your doctor may not be familiar with yet, and that is the depleting/suppressing effect intactable pain and opioids have on adrenal hormones. When patients with these hormones suppressed from pain or medications have them supplemented up to normal levels, they have reported up to a 50% decrease in pain levels, and that their medications work better again. I've been posting a lot about this subject in past months. It comes from Dr. Forrest Tennant, whose Handbook for Intractable Pain Patients you're probably already familiar with.

As for the WC, you're paying an atty for advice there, and I don't feel comfortable commenting on that.

Doc
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Unread 11-28-2011, 12:30 PM   #3
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One of the big risks of methadone is in patients requiring these high doses. Methadone leaves the pain receptors before it leaves the body...so accumulation occurs, over time. Doses overlap and eventually a prolongation QT event may happen. When pain relief stops because the receptors open again, but the drug is still in you exerting effects elsewhere, raising doses becomes problematic.
Also people do vary in how they metabolize this drug. It can be very dangerous in really high doses, therefore.

Also switching high dose methadone from high Oxy use, increases risk of cardiac events. Most methadone given in a stepwise fashion, allows the body and its metabolism to deal with it more safely. Jumping in to massive methadone dose, can kill you. We had another poster at our old board die the first night on high dose methadone, switched from Oxy! (It was several years ago). She was a spinal/ back pain patient.
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Unread 12-01-2011, 12:18 AM   #4
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Quote:
Originally Posted by mrsD View Post
One of the big risks of methadone is in patients requiring these high doses. Methadone leaves the pain receptors before it leaves the body...so accumulation occurs, over time. Doses overlap and eventually a prolongation QT event may happen. When pain relief stops because the receptors open again, but the drug is still in you exerting effects elsewhere, raising doses becomes problematic.
Also people do vary in how they metabolize this drug. It can be very dangerous in really high doses, therefore.

Also switching high dose methadone from high Oxy use, increases risk of cardiac events. Most methadone given in a stepwise fashion, allows the body and its metabolism to deal with it more safely. Jumping in to massive methadone dose, can kill you. We had another poster at our old board die the first night on high dose methadone, switched from Oxy! (It was several years ago). She was a spinal/ back pain patient.

Thanks for all of the information. I never even thought about methadone. I didn't realize it was prescribed for pain- the only time I have ever heard about it is as a withdrawal option for heroin addicts.
For the record, I have never asked my doctor for any medicine, or suggested any one course of treatment, except to say once that I wished I could shoot lidocaine into my lower back and butt cheek to numb the whole area, which then prompted him to prescribe the lidoderm patches which only sometimes work. The rest of the time, we just discuss the amount of pain control I have, at what times of day, what tasks I need to accomplish, and how the pain affects my abilities to perform those tasks. I really don't have "tasks" except to get myself around the house to use the restroom, fix food once in awhile etc. and occasionally make a trip to Wally World for fresh supplies. The doc asked me once a couple of months ago realistically how far or long could I walk, and that answer is fairly simple. While medicated, I can "walk" (that is, hobble, with cane) for up to about 20 feet without breaking, or move around continuously, such as in taking a trip to a store without a little electric shopping buggy, for about 30 minutes. I can get in and out of the car, lean over a shopping cart to shuffle through the store, and the sit upright to ride back home for about an hour of total activity, and then although I've been "able" to do these things, I know 150% without a doubt that I will PAY for it later with higher pain levels and less effectiveness from the meds, less overall mobility and so I don't push it unless I just absolutely have to.
I always hear that being sedentary is just as bad for injuries as wrong movements, so I have asked if there were some kind of physical therapy or mild exercises I could do myself to keep the rest of my body from atrophy, and I'm told that it's just too tricky with back injuries because one minor movement could trigger an inflammation or worsen a herniation and nerve impingement. That's just F@*!kin' great. :-/
(Pardon my language. sometimes my fingers just get the best of me)

Anyway, I've been battling through without any Percocet since Monday, but still fear calling the doc for more. I've been filling out the charts again so I can at least show him where and when the pain peaks and hopefully figure out the best course of action.
Are there any other meds besides Morphine Sulfate ER and Oxycontin ER? My little old lady neighbor also has back problems and her docs have tried her on most meds that she reports haven't worked for her, but she now takes Nucynta. I looked into this, but it sounds quite similar to Neurontin and Lyrica, both of which I reacted poorly to, so it may be why my doc has never mentioned it...

We've discussed the possibility of an SCS/Pain pump, but since my case is WC, of course, they refuse to pay for anything except basic, well known and widely used pills.

Thanks all for your help, though- I'll take whatever I can get~!
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Unread 12-01-2011, 08:18 AM   #5
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If you are looking for affordable pain drugs, Morphine extended release is the most affordable, after methadone, which is the cheapest but methadone remains risky.

Another option is Fentanyl patches, also expensive.

And some people use Suboxone, but that requires a special doctor who has a Suboxone permit license to give it.

There are other narcotics like Opana. Nucynta does not seem to be popular from what I've read.

Choice really depends on the doctor and patient-- some patients would not be candidates for methadone at all.
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Unread 12-01-2011, 12:13 PM   #6
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Quote:
Originally Posted by mrsD View Post
If you are looking for affordable pain drugs, Morphine extended release is the most affordable, after methadone, which is the cheapest but methadone remains risky.

Another option is Fentanyl patches, also expensive.

And some people use Suboxone, but that requires a special doctor who has a Suboxone permit license to give it.

There are other narcotics like Opana. Nucynta does not seem to be popular from what I've read.

Choice really depends on the doctor and patient-- some patients would not be candidates for methadone at all.
We did try the morphine er first, but it took a dose of 80mg twice a day to get any pain relief at all, and the nausea was unbelievable and I couldn't keep anything down if I even felt like trying to eat at all-- so he switched me to Oxycontin instead and it's worked ok without all of the side effects. I haven't had any of what I hear are 'normal' side effects- nausea, drowsiness, dizziness, etc except constipation. But it just seems like everything we try seems to work for a little while, and then it doesn't work anymore, and we keep increasing the dose, and I'm afraid that I'll be at the max of everything and still not be getting relief soon, and I worry about that. I know there have got to be people out there in worse condition than I am, so what do they take?
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Unread 12-01-2011, 12:30 PM   #7
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Originally Posted by 72daywmn View Post
Are there any other meds besides Morphine Sulfate ER and Oxycontin ER?
There are so many, individually and in combination, but it's not like going to the grocery store and choosing one.... This is why your doctor's knowledge and experience are not only helpful, but necessary. The PDR lists medications by disease/disorder, but they lump all pain medications (short and long-acting) together, and meds for neuropathic pain (and others) are listed elsewhere. For an overview of most medications used in the treatment of chronic pain, Google: medications for chronic pain but still, each one must be researched thoroughly; all pain is not created equal.

I just read your most recent response (while typing this) and see:
Quote:
But it just seems like everything we try seems to work for a little while, and then it doesn't work anymore,
This is why I mentioned the possibility of adrenal hormone suppression/depletion. There is no way to tell with certainty without a blood test, but I think it's worth discussing with your doctor (or an endocrinologist - most pain management doctors aren't up on this yet).

http://www.practicalpainmanagement.c...tractable-pain

http://www.practicalpainmanagement.c...in-update-2010

http://www.practicalpainmanagement.c...-pain-patients

Please don't balk/scoff at/dismiss the part about testosterone; women have, and need, it - just in much lower amounts than men. Nevertheless, those much lower amounts are still important, and can still make a difference if/when they are insufficient.

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Unread 12-01-2011, 10:19 PM   #8
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Default morphine, methadone, hormones, and everything else...

First, I would like to say, I am a patient of Dr. Forrest Tennant. His research results in him prescribing Human Chorionic Gonadatropin (HCG) along with Taurine, DHEA, Pregnenolone, GABA Amino Acid, and Glutamine at least in my case as a woman. You have to have a blood test done of your hormone levels at 8:00am. He is in CA, just outside Los Angeles. He has a few colleagues around the country that follow his protocol. He can be reached at 626-919-1323. However, his office is not open every day of the month. He runs a pain clinic week once monthly to care for all his patients. He is wonderful. This may be a direction you want to look into. The results are not immediate and involve self injecting the HCG up to three times weekly. Before seeing him, he agreed to issue blood test orders for me to avoid an extra trip as I live in CT. Currently, I am off his regimen as I need to follow up with him. It did help however. But, it was used in conjunction with my opioid regimen. It is well worth your time to download and read Dr. Tennant's Intractable Pain Guide regardless.

My opioid regimen includes 400mcgs of fentanyl patch for long acting pain relief, fentora...fentanyl buccal tablets for breakthrough pain, and methadone at 120mgs per day (30mgs four times daily) for my nerve pain. This combination is a very high dosage of opioids. I have RSD/CRPS along with other chronic pain conditions which preceded the onset of RSD/CRPS, including back problems in the same area as yourself. I have had back surgery, however. I also have other areas of my back and body involved with the chronic pain. I have lived with pain since age five. I am 41 now. I also use a topical compounded cream which has morphine, ketamine, flexiril (spelling?), ketoprofen, and procardia in it to rub on painful areas. the lidoderm does not help me.

In the meantime, the methadone was added when I had terrible side effects from neurontin and four other anti-convulsants. I do not know if you have nerve pain, but if you do, perhaps you can try an anti-convulsant to help add to your pain control. Personally, I only get nerve pain relief from methadone, even if does hit the other receptors. The improvement from it was marked and immediate. Perhaps it will work for all your pain. It comes in two dose types, 10mgs and 100mgs. The lower dosage is for chronic pain. The higher for former heroin addicts. Yes, it is cheap. I read some comments about finding cheap meds in the thread. My dosage started at 40mgs per day and has risen to the present dosage as stated above. If your doctor says he cannot prescribe methadone as only drug counselors with a special license can, he is wrong. He needs to write, "For Treatment of Chronic Pain," under the rx for methadone.

I personally love fentanyl as it has no highs. The only side effect for me is possible tiredness from a breakthrough dose. The patch makes it so I am not tied to the pill bottle as I was, beside BT dosages. The OxyContin you are taking is fairly high, but there is room to go higher. It does not work for me at any dose. There is also dilaudid which is stronger than the OxyContin. I do not respond to that either. Perhaps your OxyContin dose can go up, or dilaudid can be prescribed instead.

As for your breakthrough medicines, you are on medications that are much less strong than your long acting medicine. There are many options there from morphine sulfate instant relief (MSIR) to oxycodone. Some docs are hesitant to prescribe the oxycodone however. The ultram you are on is not an opioid, but an opioid agonist and is related to the nyucenta you mentioned. As far as Opana, it is a newer form of long acting morphine. As for The Percocet, it may work if it is increased.

I think it is important to understand, there is no formula that works for all. Everything I mentioned are just options to alter your current regimen. Adding methadone may be the cure all for you. Maybe not. Pain Management is really in its infancy still. Did you know that doctors receive about three hours of training in pain management in all of medical school. Have you asked your doctor if he thinks there is a procedure like a nerve block or a epidural which may benefit you? Procedures along with acupuncture and minimal exercise...walking...can be highly beneficial. I also use meditation as a form of pain control. Meanwhile, back to what I was saying about no cure all. It may take quite a bit of time before you find the right combination of therapies. You may even need to consult another doctor if this doctor is unwilling to work with you. Pain is a beast much like an ape running free and crazy through the streets. It needs to be reigned in and put under control. Doing this involves getting you on a sufficiently high dose of long acting pain medicine to where breakthrough meds are not being relied on beyond the dosage prescribed. it sounds like your regimen needs tweaking. it may be unrealistic to get to a pain score of three everyday. I have learned to live at a 5/6. You just must be willing to work with the doctor and find a doctor willing to work with you. I think keeping a strict pain diary at this point is important for you as it will reveal a pattern your doctor can work with to help abate the pain based on when you flare and when things subside. Doing your part shows the doctor you are a patient in pain trying to work with the doctor to help find a solution.

I wish you all the best in finding the best relief you can. If I am completely honest, I have to say it is not an easy road to follow. You will have ups and downs. Being open to some alternative treatments in addition to medication will surely benefit you. The worst that happens is a particular therapy does not work. At least you know you tried everything you can. I he this post helps you and clarifies some of the confusion as well as elaborates on other things people mentioned. Feel free to private message metaker his site. take care and be well.
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Unread 12-02-2011, 11:36 AM   #9
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Quote:
Originally Posted by Sloane View Post
First, I would like to say, I am a patient of Dr. Forrest Tennant.
Thank you for your input, and to NT.

You'll probably notice from many posts/threads that I've (and quite a few other folks) been reading/following Dr. Tennant's work as closely as I can (I'm on the other side of the continent) and I'm working with my own doctor, trying pregnenolone. My results so far are very encouraging.
http://neurotalk.psychcentral.com/thread156416.html

Doc
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Unread 02-21-2012, 02:42 PM   #10
Jameal Afzal
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Default Back Pain and Neck Pain ,findings cervical spine, disc osteophyte c5/6

I have had back pain and neck pain over 3 to 4 yrs i was supposed to have surgery to fix the C5/6 but was advised not to and carry on taking pregablin.
Went to see doctor yesterday for mri report: MRI Spine thoracic findings: There is straightening of the cervical spine with moderate disc Osteophyte at the level of C5/6 where there is uncinate process hypertrophy resulting in indentation of the thecal sac and foraminal narrowing on the left side. and my spine on touching the centre of the spine with finger and it hurts and pain goes towards your kidneys or back of ribcage and abdominal area,
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