Phentonal?? Mispelled probably

[WonderDerek]

I finally got to go to my pain doctor today and he gave me some Phentonal(sp?) patches and I was wondering how well it works? I haven't gotten the patches yet and might not tomorrow unless my insurance stops being retarded. The doc. said he's going to start me on a lower kind of dose but it it doesn't work enough he said I'll be able to put two patches on instead of one. Anyone have any experience with these patches? Thanks

[bob clark]

fentanyl, with an analgesic potency of about 80 times that of morphine

fentanyl (http://www.streetdrugs.org/fentanyl.htm)

Newer Info (http://www.streetdrugs.org/pdf/fentanyl.pdf)

It's a very potent synthetic opioid. Par----Tay!

Be careful.

Sold under the brand name of the DURAGESIC Patch (http://www.duragesic.com/index.jsp)® (fentanyl transdermal system) CII patch is a strong medication for moderate-to-severe chronic pain, available only by prescription, that can provide long-lasting relief from persistent pain.

[David Berg]

I finally got to go to my pain doctor today and he gave me some Phentonal(sp?) patches and I was wondering how well it works?
It depends. Even Fentanyl, like any other opiate, can fail in treating neuropathic pain, but some do report at least limited effectiveness. The problem is that you're not dealing with "conventional" pain, but pain from the nerves themselves and opiate receptors are famously inadequate in blocking this type of pain, regardless of the drug in use. But, it should do very well with any pain you have that's not neuropathic, and perhaps even some that is. Like Bob said, use it with care, Fentanyl is about as serious as it gets.

[Tarkus]

It depends. Even Fentanyl, like any other opiate, can fail in treating neuropathic pain, but some do report at least limited effectiveness. The problem is that you're not dealing with "conventional" pain, but pain from the nerves themselves and opiate receptors are famously inadequate in blocking this type of pain, regardless of the drug in use. But, it should do very well with any pain you have that's not neuropathic, and perhaps even some that is. Like Bob said, use it with care, Fentanyl is about as serious as it gets.

Agreed. Period.

Fentanyl is really a last resort. As stated Neuropathic pain is a bitch to deal with.

I'm lucky as a little Valium helps a lot.

One other note about Fentanyl is that it will constipate you, even worse than other opiates. Be careful

Regards,
Alan

[WonderDerek]

Thanks guys. I think I need something pretty heavy because my pain can get HORRIBLE. I'm not going to be using it for neuropathic pain but for the other pain. Gabapentin works fine for my neuro pain when I have it. As for the severity of the Fentanyl, my doctor said he's starting me off on the lower dosage and it that doesn't work then to call him. He's an awesome doctor so I trust him. Also, he did tell me never to put the patch on before bed, he told me to put it on in the morning. Why not before bed? And as for it constipating me, that's fine because my bowel program works better when I am constipated. And I'm more confident that I won't have an accident :) . Thanks again

[Tarkus]

Thanks guys. I think I need something pretty heavy because my pain can get HORRIBLE. I'm not going to be using it for neuropathic pain but for the other pain. Gabapentin works fine for my neuro pain when I have it. As for the severity of the Fentanyl, my doctor said he's starting me off on the lower dosage and it that doesn't work then to call him. He's an awesome doctor so I trust him. Also, he did tell me never to put the patch on before bed, he told me to put it on in the morning. Why not before bed? And as for it constipating me, that's fine because my bowel program works better when I am constipated. And I'm more confident that I won't have an accident :) . Thanks again

If you trust your doctor then go for it. I judge every thing around constipation, my bowel nemesis.........:agog:

I wish you the best with this.

Alan

[WonderDerek]

I have the patch on right now, it's the 2.5mg one and it's working okay. I think I'll have to get bumped up to the next dose though. My back still hurts, just not as bad. The patches are small lol

[metronycguy]

what have your doctor tried previous to the patch wonderderek?

[WonderDerek]

Percocet, Vicodin, Ultram, and I have tried other pills that I got from friends. So basically everything. The 2.5mg of the Fentanyl is alittle to weak so i'm going to double it. Doc said it was okay

[WonderDerek]

Percocet, Vicodin, Ultram, and I have tried other pills that I got from friends. So basically everything. The 2.5mg of the Fentanyl is alittle to weak so i'm going to double it. Doc said it was okay to

[Jadis]

hope it works for you! I was taking Fentanyl for headaches when I was younger, then tried it again at some point for back pain, but was unsuccessful in getting relief. I personally don't like the opiates because they don't seem to help for very long--I seem to be left with side effects and no relief before I need to get a refill.

[sjean423]

Derek, I have been using the Fentanyl patches since I came home from the hospital. Sometimes I don't think they help, but then one wears off, and I realize just how well it is working. Mine are good for 72 hours. It takes about 12 hours for the patch to get into my system, then continues for 72 hours. SO that when I replace it after 3 days, the OLD patch had 12 hours of medicine in my system left for the next 12 hours, while the new patch ramps up. I have to be careful that it doesn't come off, and you have to be VERY careful disposing of them. Read the inserts.

Also, he did tell me never to put the patch on before bed, he told me to put it on in the morning. Why not before bed?
My guess would be that he didn;t want you to use it the first time, and go to sleep, and not be awake for any reactions.

There are a lot of precautions regarding heat and pressure on the patch, which will cause too much medicine to be released at once. And there have been reports of deaths due to lowered respiration and problems with overdoses with the patch. So be VERY careful, but I have found that it does make a big difference on my non-neuro pain. I still have percocets for break through pain as well. Watch carefully if you have any respiratory (sp?) issues.

My dosage is 50 mcg/h over 72 hours. Are you sure yours aren't 25 and not 2.5? I was on 75 at the hospital. Since I started with the Lyrica for my neuro pain, my SCI doc and I plan on dropping the fentenyl to the 25s and see what happens, but right now I am dealing with DVTs in both legs, and that has upped my pain levels greatly, so now is not the time to lower anthing!

I find the combination of neuro pain meds and "regular" pain meds works best with me, keeping everything at a level that I can tolerate. I can handle a little of either or both, but if either one gets too high, I can't tolerate the other at all. (DOes that make sense?)

Hope it works for you, but be very careful with it. I decided the benefits outweighed the risks.

[David Berg]

Percocet, Vicodin, Ultram, and I have tried other pills that I got from friends. So basically everything. The 2.5mg of the Fentanyl is alittle to weak so i'm going to double it. Doc said it was okay
I know a lot of people who would love to have a doctor as accomodating as your's. Glad to hear it's helping.

[duge]

Derek I also am on the patch, 50Mcgrams I started on 25 and had to have it bumped up to 50. I've been on it since I came home also, I tried the Generic form and was allergic to it. Also my Dr. said it was Dangerous, I've had many a go-rround with my insurance over this med So I am on the Duragesic.
Like other's have said sometimes you don't think it does a whole lot till it pretty well runs out and then you find out just what it does do!!!
Good luck
Doug

[sjean423]

Yup, after missing "change the patch" day once, I learned to be much more careful with my calendar!!!

[metronycguy]

pain management is a tough science.
if it was neuropathic pain i would have though they would have tried a lot of the anticonvulsants first such as neurontin ,lyrica topamax .
the big problem i see when you start with the strong narcotics like fenatil is they are very hard to stop, at least with lyrica or neurontin, when you decide they really aren't helping or want to try without them, its pretty easy to taper off .
if its not neuropathic pain that the narcotics will probably be necessary, even with neuropathic pain the narcotic are usually necessary, however the anticonvulsants work well with narcotics and help to keep the narcotic dose down

[WonderDerek]

I looked at the patch and I was wrong, it is 25mcg... Oops lol. It does help but I still have bad non-neuropathic pain so I'm going to up it to 50mcg in 4 days. My patch came off last night when I was at a friends get together, drunk people hugging on me to much :zombie: , and I waited until about 1pm to put a new one on and wow did my back hurt when I woke up. How much of a difference would an extra 25mcg's make?

[sjean423]

An extra 25mcg should make quite a bit of difference. I have trouble keeping the patch on sometimes as well, have found a small piece of tape on each end helps. Keep in mind that the lost patch could be dangerous to others, (especially drunken others!) I have also experemented with placement, especially in the summer. In winter I put it on my upper arm (long sleeves and all) but during warm weather I put it on my side. Hope it helps!

[MattGimpin]

That shit made me break out in hives

[michaelricky]

Like it has been mentioned above, you must watch the heat because way too much drug can be released if it gets too hot.

I have see quite a few overdoses in the ER from heating pads, heated waterbeds, even just being in the sun too long.

Great medicine. Just be careful.

MIke

[David Berg]

Thanks for that warning, especially with the hot weather in so much of the US lately.

[sjean423]

How is it working out?

[afkap]

I have been using Duragesic for more than three years. It has been the most effective medication in providing some relief from neuropathic pain. I usually change the patches at night.

[WonderDerek]

How is it working out? The 25mcg wasn't working well enough so I upped it to 50mcg's today and I still have horrible pain, or at least earlier I did. I had a few beers with a friend not to long ago and took 3 Vicodin and my pain still is shitty. I don't want to but I might have to go up to 75mcg's :( . The Fentanyl constipates me like you wouldn't believe but the pain really is screwing me over. I can't sit in my wheelchair without being in severe pain and college starts in less than a month. I don't use my pain medicine to get high like alot of people do, I take my medicine to get relief. Sometimes the relief is there and sometimes there is nothing. I went see my rehab doctor today and told her about my pain problem and she told me that if it continues to get worse like it has been, I'm going to have to have some tests done to check if there's a problem with my muscular skeletal system(don't know if that's it). I THINK the Fentanyl is working but I still have horrible pain. I was given a prescription of Vicodin with the Fentanyl for breakthrough pain but it seems as if I ALWAYS have breakthrough pain. I don't know what's going on but I have to wait and see.

[metronycguy]

the muscle skeleton they are talking about is to see if there is something wrong inside you they can fix, could be anything from a loose or broken screw or bone pressing on nerves.

[darkeyed_daisy]

The 25mcg wasn't working well enough so I upped it to 50mcg's today and I still have horrible pain, or at least earlier I did. I had a few beers with a friend not to long ago and took 3 Vicodin and my pain still is shitty. I don't want to but I might have to go up to 75mcg's :( . The Fentanyl constipates me like you wouldn't believe but the pain really is screwing me over. I can't sit in my wheelchair without being in severe pain and college starts in less than a month. I don't use my pain medicine to get high like alot of people do, I take my medicine to get relief. Sometimes the relief is there and sometimes there is nothing. I went see my rehab doctor today and told her about my pain problem and she told me that if it continues to get worse like it has been, I'm going to have to have some tests done to check if there's a problem with my muscular skeletal system(don't know if that's it). I THINK the Fentanyl is working but I still have horrible pain. I was given a prescription of Vicodin with the Fentanyl for breakthrough pain but it seems as if I ALWAYS have breakthrough pain. I don't know what's going on but I have to wait and see.

Derek
Im not trying to be mother hubbard but drinking and Fentonyl is a very bad combination and add vicodin to that.......you may be making an appearance at the ER for overdose/poisoning.

Please be careful. Fentonyl is a very powerful drug. I had to change my father's patches when he was dying of lung cancer.....he was only on 50mg. There is a warning that comes with it that it slows your breathing..........when combined with alcohol you could stop breathing all together.......

[sjean423]

I second Daisy's Mom vote here Derek .... pick your poisen, don't mix em.

[thenose]

Derek,
If you dont go over what the doc says, dont sweat the meds for breakthrough.

That being said, you should not be eating your "Viccccies" daily. If you do, you need to ramp up the patches.
Also, since you are young...think about dumping the acetominophen in the Vicoden.
Drinking ANYTHING with tylenol is a big no-no.

I would try to ramp up on the opiate and find the lowest possible amount of tylenol that makes it work. I found the 7.5 percs split in half worked just as well as a full 3.5 perc did.
(Same pain control, half the acetominophen)

I really posted here to warn about something concerning the patches.

For me, they worked great on pain. Best pain control I ever had.
HOWEVER, they made me a raving A-hole to live with.
I was Mr argue, nasty, sarcastic, bad choices right and left.
Worst part is, I did not see it till my wife showed me by threatening to move out.

I would watch how you feel emotionally. Talk to close friends, family.

Also, DO NOT cold turkey off of them.
You can DIE. If you have been on them for a few weeks even, ramp slowly off. I was on 100's for 9 months and stopping cold turkey was worse than my SCI.
There have abeen a few people who were not even told about this.
If you are on 75's for a month and you forget to change it, you will know what a junkie goes through when they kick dope.

[Tarkus]

Derek,
If you dont go over what the doc says, dont sweat the meds for breakthrough.

That being said, you should not be eating your "Viccccies" daily. If you do, you need to ramp up the patches.
Also, since you are young...think about dumping the acetominophen in the Vicoden.
Drinking ANYTHING with tylenol is a big no-no.

I would try to ramp up on the opiate and find the lowest possible amount of tylenol that makes it work. I found the 7.5 percs split in half worked just as well as a full 3.5 perc did.
(Same pain control, half the acetominophen)

I really posted here to warn about something concerning the patches.

For me, they worked great on pain. Best pain control I ever had.
HOWEVER, they made me a raving A-hole to live with.
I was Mr argue, nasty, sarcastic, bad choices right and left.
Worst part is, I did not see it till my wife showed me by threatening to move out.

I would watch how you feel emotionally. Talk to close friends, family.

Also, DO NOT cold turkey off of them.
You can DIE. If you have been on them for a few weeks even, ramp slowly off. I was on 100's for 9 months and stopping cold turkey was worse than my SCI.
There have been a few people who were not even told about this.
If you are on 75's for a month and you forget to change it, you will know what a junkie goes through when they kick dope.

Yep, don't just stop taking the neds with out first talking with your doctors.

At some point you will need to re-think the amount of opiates etal your taking with out results.

If your kicking up the dose and get little help from it. getting stoned is not the long term answer.

Neuropathic pain does not always respond to these drugs.

Alan

[David Berg]

How's it going Derek, have you found a dosage that helps yet? Does you doc know you're changing doses? If not you could land yourself in a heap of trouble being identified as an abuser and he could pull all narcotics. Don't land yourself in a situation where you run out of meds before he'll let you have a refill, that would force you to go cold turkey. NOT fun.

[duge]

I can tell from experience that it's not fun. A couple yr's ago I decided I was going to go off of it against my Dr.'s wishes. I did but All I could do was lay and shake for about a week, then I couldn't do anything at all for hurting so bad and the Dr. told me to put it back on. I try to change it on time now and Never change ths dose without my Dr's advice.

[WonderDerek]

How's it going Derek, have you found a dosage that helps yet? Does you doc know you're changing doses? If not you could land yourself in a heap of trouble being identified as an abuser and he could pull all narcotics. Don't land yourself in a situation where you run out of meds before he'll let you have a refill, that would force you to go cold turkey. NOT fun.Well, they work sometimes, I don't understand it. Like earlier today, still had pain but wasn't unbearable like usual. Now, the pain is horrendous again. I talked to my doctor and he told me it was okay and said he would call in some more patches so I don't learn the hard way about just stopping. Why do the patches sometimes work and then sometimes it feels almost like it used to? My pain doc is the guy that gave me the Vicodin for breakthrough pain.

Also, do you have to get used to the patches? My appetite has gone to crap after putting two patches on(50mcg's) and I can only eat a few bites of a meal before being full. I wake up and my stomach is KILLING me until I take my Nexium and eat something. Will this go away because it sucks.

Another thing, I THINK I MIGHT need a stronger dose than 50mcg's and please believe me when I say I'm not trying to get high. That is the last thing on my mind, I don't want to get that euphoric feeling, I just want my pain to always be bearable. It's hurting so bad right now... I notice that when I'm in my chair for a long time that's when the pain gets worse. I'm going to college in less than a month and will be in my chair from the time I wake up to the time I go to bed which will drive me crazy. I'm going to start working out again in 15 days and I think that might put a toll on it as well. I do NOT want to get high/loaded/whatever I just want my &#*(ing pain to subside. I've had this pain for 6 months and it's really starting to piss/depress/screw with my head. Should I just tell my doctor that? I don't want him, or anyone else, thinking I'm only doing this to get high.


Everyone keeps saying that Fentanyl doesn't always work for neuropathic pain but that is not what I'm trying to control. My neuro pain can be controlled by my Gabapentin just fine. The neuro pain comes and goes but it is seldom that the neuro pain gets horrendous. The non-neuro pain is just unbelievable.

Thanks for telling me not to stop the Fentanyl cold turkey, guys. That's how I usually stop medicine but I don't want to go through withdrawls, especially knowing they can kill you.....

As I've been on these patches I actually find that I'm a better person.. It's weird, I'm more generous to people, I try harder to please people, and I have the feeling that I need to get my life straight. It makes me WANT to succeed.

as for what daisy said, I don't like mixing them. It messes with my stomach if I mix them, but the 25mcg's weren't cutting it so I needed something to take. The 50mcg's work sometimes but the breakthrough pain is so wicked. I'll have to talk with my pain doc about all of this. He's a good doctor and I trust him.

I don't know how many of you guys have had INSANE pain that literlly runs your life but that's how mines been these past 6 months. I used to just lay in my bed all day, not doing anything, because of my back. I don't know why but the pain seems to increase every now and then. I don't know if this has anything to do with it but in my car accident I was ejected from my truck and thrown in front of it. The truck flipped and eventually flipped onto my back. I say this because I want you guys to know I AM in pain. I'm not trying to get a "high". I did that earlier in my life, I went through my drug phase, I've lost friends due to them, I've seen bad things happen, I just want to be able to get my life going and with the pain I don't know if I can do that. It took me almost losing my life to realize how special life is, how delicate, how meaningful, and have seen my calling... I want to help people, I don't want to be on the road I was before my accident. I repeat that I am not trying to get a eupphoric feeling. Thanks, guys

[darkeyed_daisy]

Derek
You keep repeating about getting high. Im not really sure what kind of pain you are having. You say your neuro pain is well controlled. Is it bone pain? Exercising helps my pain. I had the insane pain you are talking about last year but my pain meds didnt make me more giving and more generous. I was a major bit** on the pain meds. Im not sure how you are going to do in school if your pain is this bad. Usually you can't concentrate with pain such as what you are describing.

As I've been on these patches I actually find that I'm a better person.. It's weird, I'm more generous to people, I try harder to please people, and I have the feeling that I need to get my life straight. It makes me WANT to succeed.

This paragraph makes you sound like you might just like the high your getting.

Derek you are going to have good days with pain and bad days with pain. We all do. Im not sure there is anything in the world to take it all away. But you have got to be careful with all these pain meds. The addiction is hard to kick. It is a major concern also that you are drinking with these pain drugs.......I can tell you alcohol and vicodin will put you on dialysis. I have a friend of my family who died two years ago because of this same combination......You are playing with fire that Nexium is not going to be able to put out.

I think you are headed for a hefty addiction.

[bob clark]

Hi WonderDerek,

My suggestion would be, since you're young and healthy except for your SCI that you get outta the house and exercise in the fresh air. Wheel your chair a couple/few miles each day or get one of those hand cycle bikes and do some "exploring".

Do you live with your parents or are you on your own?

What do you do all day long to keep yourself occupied? It seems like you're hanging around the house all day long getting high and lazy concentrating on your pain. Or hanging out with your friends getting high. You need to find something active and hopefully constructive that you enjoy doing to take your mind off the pain and minimize your drug intake.

I don't know your full situation, all I know about you is what you write here at CC and it's coming across to me as though you're depressed, feeling sorry for yourself because of your great loss (which is very understandable) and focusing on your pain and looking towards drugs to alter your condition. Be it pain or the loss you've experienced

How are you going to concentrate and remember anything that you read or are taught in school when you're blitzed as hell on one of the strongest narcotics that exists. Like you, I'm on gabapentin and it makes me very forgetful.... add a strong dose of fentanyl and whatever else you're taking and you may as well not even start school. Just mope around the house a bit, lay on mom's couch for awhile and watch the Springer show.

I think you need to make a decision about what direction you want to go in and the deadline is approaching fast..... school.

You didn't even take the time or expend the effort to learn how to spell "fentanyl" correctly yet you have a patch of it on your person. You even misspelled the word "misspelled" in the title bar of your own thread. IMO spelling doesn't matter on the Internet but it's an indication of laziness and a snapshot of just how out of it you are because of the many drugs you're on. It's only a Google away yet you didn't bother.... something needs to change in your life if you expect to make it in school. And I assume you drink a bit too which is definitely a deadly combination when mixed with fentanyl and other opioids.

I don't use my pain medicine to get high like alot of people do, I take my medicine to get relief.

And when junkies run out of dope they call it being "sick" and not what it really is, a lifestyle of chasing instant gratification and an unwillingness to get their mind and life back in order.

Being in a coma or dead will bring you relief too.

Three Vicodin and a "few" beers, is that what the doctor prescribed?

You're newly injured and I hope that you don't make any stupid decisions that will further permanently injure you and that you'll regret for the rest of your life.

I hope I'm not being too hard on you and also hope that you'll be able to work through your pain without being on so many strong pain meds. SCI sure does suck but at your age and short time period post-injury, it should get easier for ya. I hope it does.

Do you have access to any professional psychological services? Everyone who can should get some psychological help after an injury as severe and life altering as a SCI. You're suffering through a great loss. There's no shame in it and ya never know, it might help to talk with someone who you can confide in and who can objectively counsel you.

Good luck.

[David Berg]

Derek, as long as you keep in close contact with your doctor about what you're taking (including alcohol) and how much, you stand at least a fair chance of avoiding serious overdose and other problems. There's certainly no guarantee because of all the variables involved. As you're quickly learning, there's a lot of instances where drugs simply won't scratch the surface and it's hopeless to think you'll win. That's where you can easily get into trouble.

There's a fine but important distinction between addition and dependance. This is a grossly oversimplified example, but a diabetic is dependant on insulin and a druggie is addicted to meth. There's no shame in being dependant. What you have to be very careful of in your situation is when the patches start to lose effectiveness and you have to use more for the same effect. You're already at a very high dose and you're just starting. Hopefully research will come out with better alternatives down the road, but still you have to look at where you'll be years down the road if Fentanyl is the strongest option available.

As always, I highly recommend you be an informed consumer. Study up:
http://www.duragesic.com/

Oh yeah, how are you distinguishing between neuropathic pain and "normal" pain? Any non-neuro pain should be wiped out pretty quick by the levels you're taking. I can't recall now what other options you've tried for neuro pain, e.g. Neurontin, anti-depressants, etc.

[WonderDerek]

.... I repeated the not wanting to get high because I DO NOT WANT TO GET HIGH but now you guys think I only want to get high. I didn't know how to spell Fentanyl because my doctor told me about it and wrote it on the prescription and we brought the prescription to the pharmacy rfight away and I didn;t look at it. I spell something wrong and that means I'm lazy? I sit around all day because I want to get high and I'm lazy. Whatever. You don't know me, you don't know how I am, and you certainly don't know my situation. I'm asking information about this damn patch and you're critiquing my spelling and telling me I like to get high...... Thank you

"I hope I'm not being too hard on you and also hope that you'll be able to work through your pain without being on so many strong pain meds. SCI sure does suck but at your age and short time period post-injury, it should get easier for ya. I hope it does."

^^I've posted in this thread that the pain continues to get worse.

"Do you have access to any professional psychological services?"

^^ This will help my pain how? I don't need that shit. I'm doing fine psychologically whether you believe me or not, probably won't because I'm using this shit to get "high"

"IMO spelling doesn't matter on the Internet but it's an indication of laziness and a snapshot of just how out of it you are because of the many drugs you're on. It's only a Google away yet you didn't bother.... something needs to change in your life if you expect to make it in school. And I assume you drink a bit too which is definitely a deadly combination when mixed with fentanyl and other opioids."

^Spelling something wrong means I'm lazy and a "snapshot of how many drugs I'm on"...... Do you know me? No, then stop assuming shit that you don't know about. I'm on 3 medications now. Who the hell are you to tell me that something in my life needs to change when you don't know anything about me? I was asking for help in this thread, not your bullshit assumptions. I drink a bit to much? If you only knew how LITTE I drink. I might drink every now and then and I don't drink to get drunk anymore. Wait, you might assume I'm an alcoholic from that sentence.... I appreciate your help regarding my last post. :rolleyes:


Thank you, David... I know the difference between addiction and dependance and I won't be embarassed about me being dependant on a drug to help the pain. I am learning about this drug and that's why I made a thread about it. I had never heard of it and I've learned alot from this thread. I'm still getting the neuro pain but it doesn't come as often. When I do have it that's when I'll take my Gabapentin. I use the Gabapentin as needed. I try to take as little medicine as possible, I taking medicine :mad: . And I'd like to thank you for not saying, assuming, or calling me an addict or saying I'm "just doing this to get high." I do appreciate that.

[sjean423]

DErek,

I am on Lyrica for nerve pain, so I am not sure if it works the same, but I understood with the Lyrica that it had to build up to a certain leval to work, and that I had to take it steadily to have it work. Not on an as-needed basis like you would take an aspirin. It makes me wonder if more of your pain is "nerve pain" than you realize. I also have both going on and I find that if the nerve pain gets too high I have little tolerance for "regular" pain and need more break-through meds, if the nerve pain is in control I can handle the non-nerve pain better as well. Check with your pain doc if you should be taking the Gabapentin steadily. I know you want to avoid taking as much med a possible, but it might be better to take more of that and less of the other.

[darkeyed_daisy]

Derek
We only know what you write here on CareCure. Your pain should be well controlled on the amount of meds you are taking. I am just concerned about you. As you get older your pain will get worse and if you are requiring this much pain medicine now.....you will require much more later. I am not saying your pain is not real.......Depression will make your pain 10 times worst than it is if you are not depressed. I know I have been there too. I hurt so bad last year that I was ready to commit suicide. Drugs didnt help me either. The depression I was experiencing exacerbated my pain to a level I didnt want to live. I had a surgery to relieve the physical pain but I could not just lift myself out of depression on my own. I am on no pain meds now except for ultram ER and I am exercising to help bring myself out of the hole I dug last year. It can get to be too much.

Derek I only want to help you understand. You are new to this injury...at times the pain is going to be more than you can bare. Just adding drugs is not going to help if the pain is due to something else. You are a bright young man.....you have shown that through your posts. College is going to be a wonderful experience for you but not if you are miserable with pain and strung out on meds. They give Fentanyl to cancer patients who are getting ready to die. It is a very powerful drug. I am in no way saying their are not people out there that needs it but it seems you are increasing your dose at a fast rate. I hope you get all this worked out and start to feel better. You are going to have so much fun in college. This post about depression was not just about the meds....didnt you also break up with a significant other? This could be affecting your body in relation to your pain. You said it has gotten worse in the past 6 months and this is the time you were having problems with your Girlfriend also. Your mind has everything to do with your pain. I like you were slow to realize it too....... I just dont want you to end up with an addiction or worse yet labeled by your doctors as a drug seeker. I used to work in a hospital and they actually label charts to alert other doctors.....I am not saying you are one.....just take care of yourself. You have alot of potential even with an SCI.

[WonderDerek]

Derek
We only know what you write here on CareCure. Your pain should be well controlled on the amount of meds you are taking. I am just concerned about you. As you get older your pain will get worse and if you are requiring this much pain medicine now.....you will require much more later. I am not saying your pain is not real.......Depression will make your pain 10 times worst than it is if you are not depressed. I know I have been there too. I hurt so bad last year that I was ready to commit suicide. Drugs didnt help me either. The depression I was experiencing exacerbated my pain to a level I didnt want to live. I had a surgery to relieve the physical pain but I could not just lift myself out of depression on my own. I am on no pain meds now except for ultram ER and I am exercising to help bring myself out of the hole I dug last year. It can get to be too much.

Derek I only want to help you understand. You are new to this injury...at times the pain is going to be more than you can bare. Just adding drugs is not going to help if the pain is due to something else. You are a bright young man.....you have shown that through your posts. College is going to be a wonderful experience for you but not if you are miserable with pain and strung out on meds. They give Fentanyl to cancer patients who are getting ready to die. It is a very powerful drug. I am in no way saying their are not people out there that needs it but it seems you are increasing your dose at a fast rate. I hope you get all this worked out and start to feel better. You are going to have so much fun in college. This post about depression was not just about the meds....didnt you also break up with a significant other? This could be affecting your body in relation to your pain. You said it has gotten worse in the past 6 months and this is the time you were having problems with your Girlfriend also. Your mind has everything to do with your pain. I like you were slow to realize it too....... I just dont want you to end up with an addiction or worse yet labeled by your doctors as a drug seeker. I used to work in a hospital and they actually label charts to alert other doctors.....I am not saying you are one.....just take care of yourself. You have alot of potential even with an SCI.I am not all strung out on my pain medicine. I don't feel any different other than my stomach but that is getting better. Just by your last post, as well as bob clarks, it seemed as you two were saying I only wanted to get high which is bullshit. That pisses me off. I also didn't say I was upping the dosage again. I would talk with my doctor before doing that, I'm not stupid. I have pain that the doctors told me would subside, and no one believes that either.... I broke all my ribs in my accident and they still hurt 6 months after. If I get slightly touched on my ribs, it hurts and yet no one believes me but I don't care anymore. I don't want to be labeled a drug addict so I will just keep my mouth shut so everyone doesn't start assuming more stuff.

[dan_nc]

Derek, how do you distinguish the neuropathic pain from non-neuro pain or referred pain. It all seems to just "hurt."

[Broknwing]

Derek-
Don't quit discussing your pain & issues b/c one or two people have gotten the wrong idea about why you're taking the meds. PLEASE continue to discuss the issues that you're having. Hopefully someone will have some insight or be able to help...Even if no-one can help, in the future what you've gone through may help someone else going through similar issues.

Unfortunately sometimes the fentanyl patches do not work for the pain...one of my friends went through that for a long time, absolutely NOTHING worked for his pain....You are very fortunate in that you've got a pain mgmt dr that is so willing to help you find something that works and help get your pain under control....Sometimes that's the biggest hurdle that you've got to encounter in order to work towards pain relief.

I do wonder if some of the pain you are having might be neuro pain that's not being controlled by the Neurontin...Neuro pain manifests itself in a lot of different feelings, so it may feel different in one area of your body than it does in another...Neurontin worked some for me, but not well...Topamax works MUCH better w/out evil side effects that I had with Neurontin. It wouldn't hurt to try an additional or different med for the neuro pain, you may learn that the Neurontin isn't doing as well as you think it is(I did)...

Please continue to update on how your pain is doing....I hate to see that your pain is increasing, I hope that it gets better and you find the med that works best for it....

[darkeyed_daisy]

I just read my post and you are exactly right Derek. I didnt word it right. I am sorry to have made that sound the way that it did. Rib pain is excruciating.......I thought you were talking about your back pain that was getting worse. I am so sorry you are having to deal with this. It takes ribs a long time to get better. It may be that they need to try you on a combination of drugs and find the right combination that works to control this pain. I misread your post because I thought you said you were going to a stronger dose......anyway. It doesnt matter. What really matters is that you keep working with your doctors to find what does work.

None of us here think you are an addict Derek. I was just trying to explain that it is very easy to become one with the class of drugs you are taking. I think that was the concern of everyone who responded to your post. However you did need a scolding for drinking with all these meds......LOL

I think that we were all trying to explain what has worked for us. I take an antidepressant/Cymbalta in combination with Ultram ER and that relieves my neuro pain as well as my regular bone pain.

If all of your ribs were broken then I certainly understand now why you are hurting so bad. It wasnt clear in the beginning and I think most of us thought you were talking about your neuro and back pain. I hope the pain eases for you soon Derek.

[dan_nc]

I, for one, don't think Derek is just trying to "get high." I think it was sort of rude to imply that, but hey, CareCure is an open forum and we're all entitled to our opinions.

I know some people must not have as much pain as others. I wonder, though, whether patients with chronic pain from SCI might erroneously be labeled as having drug-seeking-behavior. I asked my doc for some medication to manage the pain, and basically was given some NSAID and was sent on my merry way. Obviously the NSAIDs aren't doing much for the pain (acupuncture is definitely helping, though). I don't understand why I'm not given something stronger for my chronic pain.

[darkeyed_daisy]

Dan
From working in the hospital viewing ER records......that is exactly what happens. I have had some docs tell me that I just had to deal with it the best way I can and then others who write scrips as freely as I can buy tylenol.

But it is a bad day when a drug seeker shows up to the ER and finds the doctor who will be treating him is in a chair with his own SCI. I have seen that same doctor go balistic on drug seekers..... If you read the records enough you begin to see patterns with some people. Also in my hospital we had a looney in a wheelchair who faked not being able to walk and stayed in the nursing home a month. It was the doctor in the chair who finally found her out and sent her on her way. I have never figured her out.....she had AFO's like mine too. Now she walks around town perfect. Ive seen her since. Her daughter played softball with my own daughter.

You need to find another doc if that is all he is willing to give. I don't like docs who push me to take meds but I dont like docs who tell me it is in my head either. I have experienced both in my 17 years with SCI. I find that for me female doctors work the best.

By the way I never said Derek was an addict!!!!!!!!! Although my sentence did run together in that paragraph, that is by no means what I was meaning.

[dan_nc]

But it is a bad day when a drug seeker shows up to the ER and finds the doctor who will be treating him is in a chair with his own SCI. I have seen that same doctor go balistic on drug seekers..... If you read the records enough you begin to see patterns with some people.

Stuff like that pisses me off. Just because the doctor has SCI does NOT mean he has experienced equal pain. It seems like there are a bunch of people with SCI are not in pain and don't need drugs to manage that pain. Those are the lucky ones. I've read too many posts where these lucky well-meaning individuals criticize those who actually need painkillers to manage their pain levels.

[darkeyed_daisy]

YOU are missing the point I was trying to make Dan. There are people who come to the ER seeking drugs.......back pain, migraine, toothache, pain in the foot...... those who work in the ER can recognize the patterns in these people. The doctor I was referring to is one of the best doctors around and he shows no mercy on those that just want to get high. He does have pain, bowel/bladder, and other issues. I am not criticizing anyone because they need medicine to kill their pain. But if you repeatedly show up in the ER complaining of pain and requesting Demoral/Percocet or whatever the drug may be then by all means you or anyone else with this behavior should and is labeled as a drug seeker. We are not talking about Derek here because is obviously under the care of a pain management physician which is totally different than going to the ER.

All I did in the previous post was mention that the class of drugs Derek is on is highly addicting and repeatedly expressed my concern. You automatically assume I am labeling him a drug seeker. Before you get all pissed off about someone not getting pain drugs just because they say they are in pain you need to know the whole story.

Just because some of us choose not to take pain meds does not mean we are not in pain. I know that I have a high tolerance for pain. I have not been able to feel an ear infection since I had my accident. I am talking about ear infections that burst both ear drums before I even know I have them. I dont know about you but most people feel ear infections. I am not giving anyone a hard time for taking pain drugs.

It is no ones fault but your own if you have a physician that won't give you anything but NSAIDS for pain........

[dan_nc]

Actually, I think we're talking right past each other.

I think there's a huge disconnect here. I am not missing your point; I'm trying to make a different one. You're clearly not understanding mine.

Not once did I say "YOU" or "DARKEYED_DAISY" in my statements/claims. If I had meant, you, personally, I would have said it. You are the one who has internalized and personalized the general statements I've made.

To set the record straight:

I'm not a medical professional, so I can't comment on whether or not Derek's behavior constitutes DSB. Apparently, you are, and of course, are you're free to comment on what constitutes drug seeking behavior.


But if you repeatedly show up in the ER complaining of pain and requesting Demoral/Percocet or whatever the drug may be then by all means you or anyone else with this behavior should and is labeled as a drug seeker.


I'm not sure who you're referring to here, when you say "you." I have never shown up in the ER complaining of pain. The only time I have ever visited an ER was the night I was driven then by ambulance, after having sustained a burst fracture of my lumbar spine and incurred spinal cord injury.


Just because some of us choose not to take pain meds does not mean we are not in pain. I know that I have a high tolerance for pain. I have not been able to feel an ear infection since I had my accident. I am talking about ear infections that burst both ear drums before I even know I have them. I dont know about you but most people feel ear infections. I am not giving anyone a hard time for taking pain drugs.


Again, I don't think you're one of the people I'm referring to when I mentioned the people on CC who piss me off for minimalizing the pain of others. From all your posts, you seem quite compassionate about the pain situation of others. Furthermore, I'm glad you have a high tolerance for pain.

That said, there are a load of guys I've talked to on CareCure who do not need any drugs to manage their pain because they simply don't experience pain[<--i'm not referring to you, darkeyed_daisy]. That's cool, and a blessing for them as well. What is inexcusable is for these people that do not experience pain to minimize the pain complaints of others. [<-- again, i'm not referring to you, darkeyed_daisy]


It is no ones fault but your own if you have a physician that won't give you anything but NSAIDS for pain........

I was simply curious why he didn't prescribe anything stronger. I wasn't assigning blame, or bitching, or anything else. But you're absolutely right. It's my own fault that I'm perfectly happy with my doctors and their prescribed course of treatment in the management of my pain. I'm currently going to acupuncture and massage therapy and neither take NSAID nor narcotics.

[darkeyed_daisy]

Well I do believe you are right about a disconnect......When you take a paragraph and quote it.......are you not referring to what that person said as in post #45 under this thread where you stated that it pissed you off. Im not internalizing or personalizing anything just reading what you wrote in response to my quoted words.

I should have used "a person" instead of the word you.

You don't have to be a medical professional to read "drug seeker" written on a chart Dan. By the way, I am not a doctor just an unimportant medical records person who can read.

I also never implied Derek was a drug seeker. I was and am still concerned about the chance for a very real addiction to Fentanyl for him. The high dosage is still not working or else he wouldnt be still seeking information.

[dan_nc]

Well I do believe you are right about a disconnect......When you take a paragraph and quote it.......are you not referring to what that person said as in post #45 under this thread where you stated that it pissed you off. Im not internalizing or personalizing anything just reading what you wrote in response to my quoted words.


No. When I take a paragraph and quote it, I'm responding to the words, not the person.


I should have used "a person" instead of the word you.

I probably should have left out the quotes. Sorry.


You don't have to be a medical professional to read "drug seeker" written on a chart Dan.

But to have access to the chart, you should be involved in the person's care (that is, a medical professional)


I also never implied Derek was a drug seeker.


My apologies. In reply to his post (in post # 33) you stated, "I think you are headed for a hefty addiction." I see the difference now.

I was and am still concerned about the chance for a very real addiction to Fentanyl for him. The high dosage is still not working or else he wouldnt be still seeking information.

I agree. The high dosage is still not working. I hope Derek finds something to help manage his pain levels better.

[darkeyed_daisy]

Dan most doctors do not recognize us as medical professionals......LOL we are pions.........

[David Berg]

OK folks, play nice, lol. ;)

Daisy, I will comment on one thing you said about folks with doctors who only want to prescribe NSAIDS. Unfortunately, there's a major problem for a lot of folks with very serious pain issues, and I'm talking about folks who would never in a thousand years consider abusing drugs and they're often seniors, who have doctors who either outright refuse to prescribe adequate pain meds or they're simply afraid to because of over-aggressive tactics by the feds that have been in the news lately. Many, many people with pain problems have doctors that simply "don't get it". I'm really happy to see that Derek has a doctor willing to work with him and is willing to try aggressive pain meds. I've had numerous people email me and practically beg for where they can find such a doctor.

Dan and Daisy, I think you've sorted this out well enough at this point so lets get back to Derek's problem that was the original purpose of this whole thread, he's getting lost in the argument here.

Derek, I hope you still feel you're able to come and discuss what's going on in your life right now. I know a couple of people said things that may have sounded like a personal attack, but don't give up on us. I know you're not a druggie and you're just trying to find something that will make it possible to survive each day. You have a HUGE challenge ahead of you to tackle college in the face of all this and you have my sincere respect for even considering it at this point in your life. I wish you all the best.

BTW, I'm still curious how you're distinguishing between neuro and normal pain. There's several different possible manifestations of neuro pain beyond just the burning, such as muscle and gut pain. Do a little reading here and see if anything sounds like a possibility.
http://painonline.org/mnem.htm

[darkeyed_daisy]

There was no argument.....just a colision of one track minds with different ideas. You know how women are.......we ironed it out in IM's. I agree 100 % with what you said. But the fact remains that even at high doses Derek says the Fentanyl isnt working.......I think that was the only concern here or my only concern anyway. I want to see Derek succeed and graduate from college!!!!!!!

[thenose]

While I warned you about watching the patch's emotional impact, please don't put me on the "Derek is getting high" list.

You are NOT on a huge dosage. I know an RSD guy who runs 2 100's on his chest and a 50 on his arm...and pops about 150 percocet a month on top of it.
Each person is different in the way they react to the patch (or any med for that matter) and no two injuries are alike.

There is nothing wrong with this method of pain control.

A common mistake people make is to "just take the edge off" instead of trying for freedom from the pain.

Your want to eat or not eat is one of the very common side effects. This may sound stupid, but saltines worked the "grinding" out for me. At night was the time it bothered me. Ten crackers with peanut butter or just plain and some herbal tea with a touch of honey worked very well. (I had to force myself to eat them, but it calmed everything within 15 minutes.) It stopped after a couple of weeks.

I was on the patch for a good while.
PM me if you need to chat about it or you need a sounding board and you are too pissed off to continue this thread in public.

[thenose]

PS
Derek, you have not been using the patch long enough to even adjust its proper level.

Sorry Daisy, but saying it did not stop his pain is a huge assumption.
Give it a chance.
It can take a while to find the right level.

[darkeyed_daisy]

Well, they work sometimes, I don't understand it. Like earlier today, still had pain but wasn't unbearable like usual. Now, the pain is horrendous again.
Another thing, I THINK I MIGHT need a stronger dose than 50mcg's and please believe me when I say I'm not trying to get high. That is the last thing on my mind, I don't want to get that euphoric feeling, I just want my pain to always be bearable. It's hurting so bad right now...
as for what daisy said, I don't like mixing them. It messes with my stomach if I mix them, but the 25mcg's weren't cutting it so I needed something to take. The 50mcg's work sometimes but the breakthrough pain is so wicked. I'll have to talk with my pain doc about all of this. He's a good doctor and I trust him.



I didnt make an assumption about anything, he said it.





David, That is a really good link. I am going to store it in my favorites. I totally agree with you about doctors. That is why it is important to find one that knows Spinal Cord Injury pain. It is hard to explain to someone who has no background in SCI.

Derek- I hope this link helps you understand what pain you are having. Maybe you can use it to talk to your doctor.

[sjean423]

Derek, One thing I have found as well, is that even tho' the fentenyl is not for neuro pain, if it can control the "regular pain" the neuro pain is easier to control as well. The other day my patch came off, and I didn't realize it. I had other issues going on (and ANYTHING painful below my level that I dont "feel" causes what I was told is "referred" pain in my back) so I never suspected it was the patch. That night I was literally sitting in bed sobbing while I was waiting for the breakthrough meds to kick in. Not only did my back pain skyrocket, but the neuro pain in my legs and lower back was through the roof as well. I know I have said this before, but try to find the balance of meds that will keep you comfortable, without fogging your brain to much for school. Good luck with it. I personally find the pain the biggest issue to deal with for the SCI.

ps just reread your posts and you mentioned working out again soon. That should help things some as well! I also realized that you said you don't have as much neuro pain as well, so some of what I said doesn;t really apply.

[WonderDerek]

Just to end this thread I found the correct dosage. Thanks to all who have helped me with this topic. I also had to go a day and a half without the patch because of my dad forgetting to get them from the pharmacy. It was a BAD night. Thanks again

[dejerine]

"...please believe me when I say I'm not trying to get high. That is the last thing on my mind, I don't want to get that euphoric feeling, I just want my pain to always be bearable.?"

Derek, I am deleting the post because it was only meant to be humorous and sympathetic, not accusatory. (see below)

[WonderDerek]

"...please believe me when I say I'm not trying to get high. That is the last thing on my mind, I don't want to get that euphoric feeling, I just want my pain to always be bearable.?"

Come on Derek. You are lying. You expect US to believe you? Get off it. You can't kid a kidder.

Every one of us just wanted to get high. That is why we all went to such carefully executed lengths to acquire spinal cord damage and central pain just so we could have a socially acceptable way to beg our doctors for pain medicines and then get high AND very constipated.

I know of no more effective way of getting high than cord damage, with the help of course of the really expensive set of drugs you may sometimes be able to wrest out of the hands of your pain management center.

So don't tell us this was not all premeditated. You are a drug seeker, just like the rest of us. I can't believe you thought we would fall for it.Although you seem to be being 'sarcastic' or whatever, FUCK YOU. I hate pricks like you. You might be the only person I'd wish my pain on just so you could shut your fucking mouth. Take my pain and you'd never open your fucking mouth again you fucking asshole. You deserve to die.

[WonderDerek]

****************************NOTE****************** ***********
THE PAIN I AM HAVING IS NOT NEUROPATHIC PAIN. The problem I'm having is with the NON-neuro pain

One thing that I have just read is that people seem to overlook that I'm not looking for something to control my neuropathic pain. My neuro pain is more often than not bearable. The Fentanyl does, however, help with the neuro pain as well. I forgot to add earlier that I am now on the 50mcg patches and they work fine most of the time. I have one on now and although it is helping ease the pain it is not allowing me to sleep. I do not plan on upping my dosage either. Also, will someone ban the dejerine prick?

[bob clark]

****************************NOTE****************** ***********
THE PAIN I AM HAVING IS NOT NEUROPATHIC PAIN. The problem I'm having is with the NON-neuro pain

One thing that I have just read is that people seem to overlook that I'm not looking for something to control my neuropathic pain. My neuro pain is more often than not bearable. The Fentanyl does, however, help with the neuro pain as well. I forgot to add earlier that I am now on the 50mcg patches and they work fine most of the time. I have one on now and although it is helping ease the pain it is not allowing me to sleep. I do not plan on upping my dosage either. Also, will someone ban the dejerine prick?

Hi WonderDerek,

You take a shot of heroin (purest form of opioid??) and you fall asleep so fast you dont have time to get the damn needle out of your arm. But with all the synthesized "opioids", Big Pharma must put something in them to keep you awake.... aside from all the ear ringing you get from all the damn aspirin/acetemetaphine they include in the mix. They probably don't want people falling asleep at the wheel (if driving) or falling and getting hurt at home or wherever. Lawsuits. If I'm taking oxy or hydrocodone (Percocet or Lortab whatever) I can't sleep for as long as I'm taking them..... well the first 3 or 4 days. They're almost like speed.

So you may want to wait awhile (until you're ready to sleep) before taking your neuro-pain meds like Neurontin/gabapentin. These will help you sleep.... they're like sleeping pills to me if I'm in bed. If I'm up and in my chair I can tolerate the drowsiness... if I'm concentrating on something they don't make me tired at all.

I don't know what dose of Neurontin/gabapentin you're on (I'm on 500mgs x 4) but you could double the dose at bedtime to help you sleep. Cut back on the opioids (although kinda hard to do with the patch I imagine... without testing it) a few hours before your bedtime and take the Neurontin/gabapentin when you want to sleep. It may help. Or take your Neurontin/gabapentin with 5 or 10mgs of Valium/diazepam after laying off the opioids for a few hours. Maybe remove the patch a couple/few hours before you want to sleep.

Long term users of pharma opioids don't have this problem... but the pain relieving properties reduce as well.

Opioids make my neuro-pain worse by relieving all my other aches and pains leaving me to concentrate or focus on the stabbing neuro-pain in my right side. I don't have a prescription for any opioids but do them once in a while when I can get my hands on some. I do them more or less to get high on.... a "stay at home" mini-vacation as I refer to it as. :)

[Obieone]

Hey Derek ....
I've been following this thread and just thought I would pop in with my 2 cents worth here. My husband Bill is on a 25mg fentanyl patch as well as 20mg oxycodone. He takes extra strength tylenol for breakthrough pain. He is a 6'1 ex-logger, pipeliner, heavy equipment operator, hunter bushman type .... and I have seen him crushed by his pain on bad days. He was the type that wouldn't take a pill for anything (not manly you know) pre sci ..... he would absolutely agree the pain is the worst part of living with this injury. I could be wrong here but I think dejerine was making fun of the idea that you were only after a cheap thrill by looking for stronger pain meds ... and yeah you went out and got sci so you could get good drugs to get high ...... right :wtf: . Of course we know that's not the case ... he/she was just making the point ..... you need to do whatever it takes to stay sane and lead as "normal" a life as possible .... it sounds like you've found a doc that understands the nature of this injury so you can do that.
Derek this forum is one of the most valuable here at CC ..... everyone here comes from a place of experience that is invaluable. Remember knowledge is power .... Don't be scared off ....
Good luck with school ..... you're an amazing guy and I'm so sorry this happened to you .... hang in and stay strong and remember you're among friends here always !

Obieone http://www.clicksmilies.com/s0105/natur/nature-smiley-016.gif

[darkeyed_daisy]

Derek,

I am glad you finally found the correct dosage to somewhat relieve your pain most of the time. I hope you also find a way to get some sleep. Don't stop posting here. This, as obione said, is a very valuable thread with lots of useful information.

I am looking forward to hearing you do great things in college. I really hope your pain gets to a tolerable level so you can enjoy all the things you deserve. But given that you cant sleep, you may be the one to outlast your buddies at all those frat parties. LOL

Good luck......

[David Berg]

Derek, I 'm glad to hear you found a dosage that works for you. For someone with the kind of pain you're facing that's a HUGE accomplishment. And it comes at a perfect time before your fall classes start. That must have been a hellish night without your patch, hopefully your dad got the message on just how vital they are for you.

I realize this is a sore point for you, but Dejerine has a pretty sarcastic sense of humor that comes out of a lot of bitter experiences very similar to yours. He's been coping with full-body, severe neuro pain for something like 20 years and has had doctors insist that the pain isn't real and he's crazy, literally yell at him and rip him a new one because their treatments didn't touch his pain, and had friends and family and many other ignorant people run him down for his efforts to get his pain under control. If you read some other Dejerine's other posts you'll see him use this sarcasm to attack research funding issues like how NASA is getting a huge budget while pain research is starving, and other injustices. He also has a lot of valuable knowledge to share that's helped a lot of people better understand what's going on with their pain. He definitely was not attacking you and if you read his post again you'll see that he's using sarcasm to sympathize with your plight because he's been there for a long time, so hold off on your attack, OK? I didn't appreciate the accusations against you, but I don't want to see them going the other way, either.

BTW, as a side note I'll mention that I sometimes watch House on TV and one thing that really bugs me is how the other doctors run down House for being "addicted" to drugs for his pain. It annoys me to no end (and that's putting it politely) that they're equating legitimate dependance with addiction. There's a big difference, people!!!

[dejerine]

Derek, I was one hundred percent being ironic, not sarcastic. I am like you. I have heard so much about "secondary gain" etc. from people who didn't know about pain, that I thought I would show sympathy by poking fun at all the ridiculous accusations people make toward us, by "putting a little English on it", and exposing the ridiculousness of their claims. I meant to help you smile and to make you LESS vulnerable to their judgings.

I guess when you are in pain, you deal with it differently. I try to use humor. No one would deliberately subject themselves to spinal cord injury or CP. I love you man and am sorry if I hurt your feelings. I meant the opposite of what I was saying, you know, IRONY. If you follow my posts, they usually are jokes, not serious. This one backfired. Sorry.

When you have CP a long time (I think I have had it longer than you have been alive), and have spewed out all the serious frustrations, you sometimes find you have nothing left to say but humor, kind of a gallows humor, but humor nonetheless. I find Bob Clark can get me laughing when no one else can, when he decides to let out a little humor (You will also find he has insightful clinical information you can't get anywhere else).

For reasons I cannot explain, the ones here who display a little humor occasionally remind me I am human. Often they are the very sickest ones. When Alan said "whinefest" it made me smile, and I still think of it, because Alan is so sick, but still had that little bit of humor in him. I can laugh at my own predicament a little more easily. Thanks, Alan.

Even your anger leaves you because you realize your language on the unknown condition of CP cannot be heard, so you either withdraw entirely or sometimes like me you reach that point where you go into the hospital for something and smile at the ineffective pretense of some teeny bopper, just out of school, nurse (who turns out not to be a nurse, just a clerk) trying to write down your history, then you repeat the same symptoms to the doctors as before, and then you leave saying the whole business is a joke.

I consider it a good day if I refrain from including spoof symptoms just to wake them up, like "the episodes of spontaneous combustion are growing worse" or "I think my mitogen activated protein kinase level is increasing--how did my test results come out", or "How do you feel about Schlepeldigger's ideas on this condition?", or whatever.

I think maybe it is the medication that does it to me. Silly, drunk, isolated out of my mind, whatever you want to call it. Life is easier to endure if you try to look at it sometimes as an episode of "MASH".

I don't have enough energy to get upset much. I am actually glad to see you still do, although I apologize for causing it. I think what I was trying to say is "Don't waste energy trying to defend yourself because the accusations are so silly and don't make any sense, so why respond." Anger kept me going for a long time too, but eventually, it was too exhausting.

When a person feels impotent, sometimes they think anger preserves some power to them, but it winds up backfiring. People get tired of sacrificing animals to the angry God, and leave.

You need the help of your family, so try not to show your anger to them, eventually they give up.

[rfbdorf]

Derek -
Excellent that the fentanyl is producing some results for you.
My wife used 150 mg patches (actually, a 100 and a 50) for about 6 months before switching to methadone.
Bob suggested removing the patch a few hours before sleep. That's probably not a good idea, as once removed, the patch will dry out and be unusable. I assume the patches you use are intended to be replaced every 3 days; it would get real expensive to replace them daily.

Bob -
That's a nice tip about the gabapentin; we might try changing times of gab dosage from morning to evening. Thanks.

- Richard

[sjean423]

Derek,

I find that the percocets that I take for breakthrough pain keep me awake as well. Reaing this thread I am realizing that I shouldn't let my pain get to the point of needing them at bedtime, or I will be awake until 4am. Haven't solved this myself yet. I don't thing playing with taking the patch off and on will help, as the meds take a while to get into your system, and your current pain is being relieved by meds that got into you body several (supposedly 12) hours earlier.

Good luck with this. Hope your issues stay resolved and school goes well.

[rfbdorf]

...I am realizing that I shouldn't let my pain get to the point of needing them at bedtime, or I will be awake until 4am. Haven't solved this myself yet.
Our pain specialist said her goal is to get the primary medication tweaked until breakthrough meds are needed only once or twice a week.

I don't thing playing with taking the patch off and on will help, as the meds take a while to get into your system, and your current pain is being relieved by meds that got into you body several (supposedly 12) hours earlier.
Yes. It takes many hours to ramp up its effectiveness, and longer to ramp back down. It's intended to be long-term.

- Richard

[sjean423]

Our pain specialist said her goal is to get the primary medication tweaked until breakthrough meds are needed only once or twice a week.

- Richard

Sounds like I need more tweaking ...... am using the breakthrough meds twice a day, or more.

[mike bauer]

I always thought that Morphene was the real big near last resort pain med.... at any rate, Im on Morphene , Avinza and Lyrica... Results??? eehhh.. OK.. Not great, Just OK. But Im going to try a stimulator. Trial Soon . Constipation ? Big Time. Solution: Lots of Stool Softners with Active Laxitive additive. Thaniks., Mike, FLA

[rfbdorf]

Morphine is quick acting, better used for breakthrough pain than maintenance.
- Richard

[Broknwing]

Morphine is quick acting, better used for breakthrough pain than maintenance.
- Richard

Morphene does have an extended release version as well...The combination of Morphene extended release(I can't remember the letter attribution anymore) and short acting Morphene was the only thing that worked for me when in rehab...

[Junebug]

I am new to the board, my name is Jani, and I was once on three 100 mcg Fentanyl patches. Now I have the Synchomed pump with Dilaudid in it ( I get itchy with morphine and Dilaudid is stronger ). I have arachnoiditis, which is extremely indescribably painful, constantly.

Do not take your patches off in the 72 hour period. Sometimes you can change patches in a 48 hour period with your doc's permission. I had a hell of a time keeping them on, with getting a breakout, etc.

The pump works better for me. I am glad I have a great pain magmt doc who also prescribes breakthru meds. I take Baclofen for spasticity, Reglan and Nexium for stomach problems, Effexor, Colchicine, etc. I have been through so many pain meds I could prolly help anyone who has questions.

Hello to all of you, and Derek, please don't mix any alcohol with Fentanyl and Vicodin, it's a great way to end up dead. That's all the preaching you'll get from me. When you wean from the patch, it's hard, you'll get cold sweats, etc. Enjoy your time as a student, good luck with the grades while on the meds, it does complicate things.

Jani:p