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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 8:20 am 
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Unfortunately:

Hospitalist : The doctor who prescribed my current medications is a hospitalist; he only treats patients who are actually in the hospital, and won't be giving me any future prescriptions. I can't even talk to him; the hospital says he's off duty until early next month.


Neurologist : My new neurologists (the first one crossed Wifehorn, always a mistake) won't get involved in pain medication and won't see me at all for a couple weeks. They do have patient records of treating me in the hospital (my first neurologist didn't have privileges there, poor bunny) and they have assigned me a doctor, but for pain management I'm on my own. Which is funny, since there's no additional treatment available after the IV-IG, and the ONLY thing any doctor can apparently do from now on is pain management. Guess I won't be making $350 appointments so they can tell me how much progress I've made without any help at all from them.


Primary Care Physician : That leaves my primary care physician, who probably has never had a GBS patient in his life before (incidence of the disease is apparently 1 in 100,000 or less; many doctors don't treat 100,000 patients in their careers). Yesterday he was out of the office (and I can't possibly travel to his office for now), but when he comes in this morning I'll get him on the phone.


Drugs : I still have leftover Tramadol and Vicodin, but I suppose I shouldn't mix those with oxycodone. The amount of pain is not going down from the meds I have. I'll try the Lidocaine patches (I can get a few of those from a friend with no prescription, but I understand they're very costly), and I'll ask about the Gabapentin ...

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 9:41 am 
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My personal observations with chronic pain do not apply to Foggy's condition, where it is the nerves themselves that are damaged. They also do not apply to most of the other conditions that FogBowers have been enduring for months or years.

For lower back pain, I have found that a back supporter (available at any sporting goods store) offers both immediate and day-long relief. Standing in front of a classroom for 50 or 75 minutes without that back supporter was basically impossible for me. I have also found that a flare-up of sciatica can be halted by (a) sitting down for a while if I have been standing or walking or (b) standing up for a while if I have been sitting down. A really good office chair at both home and work seems to make a huge difference. This combination of non-drug solutions permits me to avoid even the mild painkillers in almost all cases, although I take a low-dose aspirin once daily as recommended by my physician.

Surgery presents an entirely different kind of challenge. Sinus headaches are now gone because a surgeon rebuilt the sinuses on both sides, but for a while I had to take Vicodin with all of its attendant side effects.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 10:13 am 
Quote:
(I can get a few of those from a friend with no prescription, but I understand they're very costly),

My sense is that is not a good path to start down.
Quote:
Primary

At the GBS Intl Foundation website is a list of hospitals they call Centers for Excellence
http://www.gbs-cidp.org/
Quote:
These Centers of Excellence work as a network of resources for patients who are unable to consult with local experts.

I'm thinking maybe your primary can call one of these Centers of Excellence and get some guidance on your care.


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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 10:38 am 
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Maybe I missed it, but has anyone mentioned Acupuncture?

Acupuncture is highly effective for pain relief. I don't know if it fits with Fogster's situation or not, but I know from personal experience that it really, really works. In my case, I had a serious neck injury which led to chronic pain. I was discouraged to find that the mainstream medical folks only had two solutions to offer: addictive pain medications or surgery. Those were the only tools at their disposal. I was desperate to find an alternative so I tried acupuncture. I went into it with a healthy dose of skepticism, but was pleased to discover that it actually worked. It was even covered by my insurance plan.

I suggest you try it. You have nothing to lose but your pain.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 11:34 am 
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If I were you I would find a pain management physician. ie, anesthesiologist, neurologist, etc. there is a website that is helpful as well http://www.partnersagainstpain.com/pain ... /tips.aspx there are several options to treat neuro pain, flector patches which deliver an nSAID directly to an area. Lyrica and percocet. although to achieve workable levels you have to take lyrica a few days to maximum effect. I was misdiagnosed with trigeminal neurlagia and given lyrica and percocet and it worked for the most part when in fact I had a horrible tooth abscess and resultant loss of a bridge and 1 tooth. but the stuff worked even when I couldnt open my mouth. ther are natural suppliments that help pain, bromelian, for one, ie, Boswella 90 mg x3 day
Bromelain 1500 /.day,Glucosamine ,Harpogophytum 960 mg 1 twice day, with physician consult . RX lidoderm patches used mostly to reat post herpetic neuraliga, RX fentanyl patches for severe pain, once you get to a pain person, who knows what and how, you will feel much better. Not every physician knows how to treat pain and most under treat in my opinion due to being afraid of being sued or abuse etc. when in fact less than 1 percent of real pain patients abuse drugs. so says Dr. Portnoy. Hope this helps.


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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 11:52 am 
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Would Lidocaine patches help Foggy? I know someone :- who has a lot of these patches that s/he didn't need from a recent traumatic injury. They're very expensive and beautifully packaged (so I am told).

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 1:03 pm 
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Lidocaine patches, no. My problem is nerves, not skin pain.

Talked to my primary care doc, the nurse practitioner had some good experience with GBS, she talked it over with the doc, and here's my new regimen for now:

  • Stop taking Percocet
  • Oxycontin 20mg, still 2x daily
  • Tramadol, 50mg, 3x daily
  • Lodine (an anti-inflammatory that I've taken for back pain for years and really like, you can drive a car and it's not addictive) 400mg, 2x daily

We'll see how that goes, and then report back to the primary care doc early next week.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 2:14 pm 
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the nurse practitioner had some good experience with GBS


Woot! :-bd Hope the new regimen works!

Edit to add: Fish Oil (Triple Strength, Nature's Bounty) is an excellent anti-inflammatory. ( Add dead horse beating smiley, 8> )


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 Post subject: Hijack this thread
PostPosted: Fri Oct 28, 2011 3:23 pm 
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LM K wrote:
Hey Emma,

My comment wasn't directed at you personally; I was addressing the issue on a whole as it applied to Foghorn's situation. I honestly wasn't criticizing your comment at all; your info was very useful and helpful!!

I'm sorry!! [-o<

Please, please, please don't bow out of this topic! You have fantabulous info to share and do so fantabulously! :xo


No no no no ... you have nothing to be sorry for hun. I didn't take your post as being critical, but it did cause me to sit back and take a good hard look at everything I'd said here. When I responded I was very angry --- at MYSELF.

Although I was speaking directly to Foggy and what he is going through, I was posting some very specific and detailed advice regarding specific medications and treatments. I know that the active members here would understand that what I was saying was for Foggy's benefit and that I was not directing him to disregard his doctor's decisions in his care, but this is an open forum that can be read by anyone and it was horribly irresponsible of me to post what I did knowing that someone else could have taken that advice for themselves. As a licensed professional, I should have known better than to do such a thing. That's what I meant when I said I should "bow out". It's ok to give information, but I went too far out here and should have instead pm'd Foggy about what I thought he should discuss with his doctor.

It would be like one of the attorneys here giving legal advice to a specific person, and then someone else taking that advice and applying it to their situation. It was a very stupid thing for me to do. My only defense is that you all feel like family and I didn't even consider that my posts could be read by an even bigger audience. I'm horrified to think that someone could have been harmed by what I posted here. I will do my best to keep this in mind before I post anything else like this again.

I really hope I'm making sense here, because ironically enough I'm under the influence of a narcotic as I speak lol. (been sick for a while and finally had to break down and take that damned cough medicine)


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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 3:51 pm 
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MsDaisy wrote:
Foggy, I’m so sorry you have to go through this, but I’m glad you’re home. It’s true that docs do tend to under-treat pain as LMK said, even though pain is now classified as a vital sign. There are two reasons for this, first because of “seekers” who know exactly what to say to get loads of pain meds, and many of them actually sell the drugs instead of taking them. And seekers can be anyone, even LOLINADs, so they never know.

(Pronounced “Lolly-Nad”= Little old lady in no apparent distress.)




There are people who do play the system and just want to get high, but I cringe when I see patients labeled as 'drug seekers'. I've never worked ER, so I suspect my attitude might be a bit different if I had, but far too many of these 'drug seekers' are simply people whose pain is grossly undertreated.

Countless times I've gotten report that so-and-so is a seeker and what a pain in the ass they are and how disruptive they'd been all day. The first thing I do when I meet the patient is sit down and discuss their pain issues, and reassure them that I will do all I can to see to it that they are kept comfortable and that I will bring them their pain meds when they are due. Then I do just that. Once they realize that they can trust me to treat their pain in a timely and effective manner, not surprisingly they calm down and often require less medication. It's the mistrust and fear that they won't get what they need when they need it that causes most of these people to act out.

Besides that, most ARE seekers --- they are in pain and need relief. I'd be seeking too if I were in their shoes. So the label means nothing to me.

One of the most infuriating examples happened not too long ago. One of our docs adamantly refused to give this elderly lady any additional pain medicine and it was obvious she was in excruciating pain. He actually wrote in her chart that she was a 'drug seeker' and that he wouldn't be ordering her anything and even stated he wanted to decrease her medication. Well, it turned out that her cancer had spread to her bones and she had pathologic fractures in her neck and and hip and an impending fracture in her right arm. Luckily, that asshole doc was not on call when I was working with her, and I was able to get an order to start a continuous morphine drip on her and she was finally able to get some relief. That is the kind of crap that just makes me want to spit. Sorry for the rant.


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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 4:10 pm 
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Unfortunately, you have to take this into consideration when dealing with the medical profession and pain:

Drug Control vs. Pain Control

Since pain cannot be verified objectively, there is only so much a conscientious doctor can do to make sure a patient is not a malingerer, an addict, or a drug dealer. At a certain point (Jacob Sullum, reason.com), he has to choose between trusting his patients and helping the government enforce its arbitrary dictates regarding psychoactive chemicals. If he sides with his patients, he risks his license, his livelihood, and his liberty. If he sides with the government, it is inevitable that some patients will suffer needlessly.

Doctors are less inclined to prescribe opioids, even to legitimate patients in horrible pain, when they worry that regulators, police, and federal drug agents are looking over their shoulders, ready to second-guess every decision and transform honest mistakes or medical disagreements into felonies. Every additional layer of scrutiny only compounds the drug war's chilling effect on pain treatment.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 4:13 pm 
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Foggy wrote:
Lidocaine patches, no. My problem is nerves, not skin pain.

Talked to my primary care doc, the nurse practitioner had some good experience with GBS, she talked it over with the doc, and here's my new regimen for now:

  • Stop taking Percocet
  • Oxycontin 20mg, still 2x daily
  • Tramadol, 50mg, 3x daily
  • Lodine (an anti-inflammatory that I've taken for back pain for years and really like, you can drive a car and it's not addictive) 400mg, 2x daily

We'll see how that goes, and then report back to the primary care doc early next week.


Foggy, I forgot to mention this earlier, but ask your pharmacist to help you set up a regimen as to what times you should take these meds for maximum benefit. If you stagger them so that one is kicking in as the others are beginning to wane, you may have better results. For example, take oxycontin at 8 and 8; ultram at 5am, 1pm and 9pm (to help get you through the night) ... not sure where to plug in the lodine lol ... anywho, the pharmacist would best know how to set up a schedule for you.


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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 5:56 pm 
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A problem with "drug seekers" is that they can be experiencing acute pain for quite a while before anybody takes their pain seriously. It's a bind they have created for themselves, with the help of a prescribing physician.

My mother became addicted to Demerol, a narcotic analgesic that changes the perception of pain. Her physician prescribed Demerol for her migraine headaches; as I recall, back then there were none of the medications that can be taken at the first sign of a migraine. My father injected the Demerol intramuscularly. Whether because she experienced a real increase in the number and severity of her migraines or because she was becoming addicted to Demerol (or both), she more and more often demanded Demerol. I can remember as a school kid of the early 1950s coming home to a darkened house that had to be absolutely quiet. These headaches would go on about three days. She also developed problems with her cardiovascular system, leading to several replacement surgeries in her legs in the 1960s.

By the 1970s she was no longer able to work (she was in her 50's). I had long since moved out of the house, but my sense was that her migraines came even more often. Then she and my father chose to make a road trip from East Texas to Chapel Hill to see my newborn son.

Somewhere along the road or while visiting with us, she had at least one mesenteric thrombosis. She complained of pain, which my father treated for two days with injections of Demerol. I don't think she ever told him (or me) that the pain was in her abdomen, not her head. Finally, I convinced him to take her to the ER at NCMH, where she was admitted almost immediately. Surgery early the next morning revealed that almost all of the intestine was dead and had to be removed. The surgeon left the OR to ask us what to do: leave her without an intestine, which he considered an act of cruelty, or sew her up and medicate her pain with morphine in increasing doses. My father and I chose the latter; she lived about 24 hours longer. Her first trip on an airplane was in her coffin.

I tell this story because drug seekers can do themselves immense harm. If the drug they crave does not do them in, then something like what happened to my mother can happen. For that reason, if the pain persists for a long time, I think it may be important to find a pain physician who knows exactly how to use the non-narcotic, non-addictive pain medications (some of which have been mentioned above). There is a national society of such physicians, but I cannot remember its name. There is a telephone number on their Web site to call to find one of these physicians in your area. It is a specialty within a specialty.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 6:11 pm 
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I'm sorry about your mom, Toll. There was not the awareness back then of the dangers of addiction to prescription meds.

I had surgery about 30 years ago and was given a prescription for Demerol. I liked it. When they ran out I called my doc. She said

"You shouldn't need them still."
"Well, I quit smoking the day of the surgery and I'm going crazy and still have some pain from the incision."
"Let me think about it, I'll call you back."

A few hours later my doorbell rang. I opened it to find my doc in the hallway with a bunch of flowers in her hand.

Me
"Hi. :o "
"Hi." She hands me flowers, I invite her in, we chat, she gets up to leave.
"Here." She hands me the prescription. "No refills, no matter what. These are dangerous."

She wanted to see if I looked addicted, I guess. :D I loved that doctor. I picked her out of the phone book because I had a friend with the same name. I later found out she had been a mentor to half of the female OB/Gyn's in LA and was beloved.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 6:35 pm 
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I'm very conscious of the addictive power of the drugs. My mother and grandmother were both alcoholics, and I've got the addictive gene, whatever it is. But I do need the pain control, and the most effective painkillers are addictive.

On the bright side, as my doctor's nurse practitioner said today, I WILL recover from this nightmarish disease. It didn't hit me as badly as it hits some folks (it is potentially fatal) and I was in relatively good shape for my age. I'm being as active as possible, and I expect a full recovery within 3 months (positive attitude).

I quit smoking cold turkey two years ago, when I was smoking almost 2 packs a day; I quit drinking hard liquor and drink beer or wine only occasionally and in moderation; I once lost 95 lbs. in a year and a half. I have iron discipline when I need it, so if I do become addicted to, say, oxycontin, I'll unaddict myself at the earliest opportunity.

Heck, I could probably even quit Fogbow if I needed to ... maybe ... I think ...



OK, never mind. Some addictions are too strong even for me. :oops:

Fogbow is digital crack. ?(

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 6:57 pm 
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kate520 wrote:
I'm sorry about your mom, Toll. There was not the awareness back then of the dangers of addiction to prescription meds.

I think that her physician knew what was happening. She told me of at least two times he had asked her to see a psychiatrist. She refused and each time considered leaving him; the reason she stayed was obvious, I think. She said that she had been greatly insulted.

I don't really blame her local physician for this; it was and is hard to deal with drug addiction. Bayer's great OTC drug, Heroin, addicted some people for life. Once while she was hospitalized in New Orleans at the Ochsner Medical Center, one of her hospital physicians asked a psychiatrist to visit her for a consult. She packed herself up and left Ochsner against doctor's orders.

When patients fight all attempts to help them, there is not much more that anyone can do.

It sounds like your doctor was a great doctor and a super human being.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 6:59 pm 
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Pappy, it's strange, but opiates are not addictive as long as they are really dulling real pain. Once you continue to take them for pain you believe you might get, then they become addictive.

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 7:21 pm 
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Foggy wrote:
. I have iron discipline when I need it, so if I do become addicted to, say, oxycontin, I'll unaddict myself at the earliest opportunity.


Please, when it gets to the point where you don't feel you need the oxycontin any longer, let your doc taper you off of it slowly.


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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 7:48 pm 
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Pappy, are you confabulating a little? When was the first time you decided to quite smoking?

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 8:44 pm 
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Sterngard Friegen wrote:
Pappy, are you confabulating a little? When was the first time you decided to quite smoking?

Uhh, when I quit at age 18 and didn't start again until I was 35 ... but I smoked other things during those years ... :oops:

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 Post subject: Treating chronic pain
PostPosted: Fri Oct 28, 2011 8:45 pm 
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Thot sew. [-X

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 Post subject: Treating chronic pain
PostPosted: Sat Oct 29, 2011 8:33 am 
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Emma wrote:
There are people who do play the system and just want to get high, but I cringe when I see patients labeled as 'drug seekers'. I've never worked ER, so I suspect my attitude might be a bit different if I had, but far too many of these 'drug seekers' are simply people whose pain is grossly undertreated.

Countless times I've gotten report that so-and-so is a seeker and what a pain in the ass they are and how disruptive they'd been all day. The first thing I do when I meet the patient is sit down and discuss their pain issues, and reassure them that I will do all I can to see to it that they are kept comfortable and that I will bring them their pain meds when they are due. Then I do just that. Once they realize that they can trust me to treat their pain in a timely and effective manner, not surprisingly they calm down and often require less medication. It's the mistrust and fear that they won't get what they need when they need it that causes most of these people to act out.

Besides that, most ARE seekers --- they are in pain and need relief. I'd be seeking too if I were in their shoes. So the label means nothing to me.

One of the most infuriating examples happened not too long ago. One of our docs adamantly refused to give this elderly lady any additional pain medicine and it was obvious she was in excruciating pain. He actually wrote in her chart that she was a 'drug seeker' and that he wouldn't be ordering her anything and even stated he wanted to decrease her medication. Well, it turned out that her cancer had spread to her bones and she had pathologic fractures in her neck and and hip and an impending fracture in her right arm. Luckily, that asshole doc was not on call when I was working with her, and I was able to get an order to start a continuous morphine drip on her and she was finally able to get some relief. That is the kind of crap that just makes me want to spit. Sorry for the rant.



It is all very true that true pain suffers suffer more because of provider’s fears of being taken in by seekers and you have every right to rant about that. It’s so wrong. But its not just true pain suffers or drug addicts that seek, and that’s the problem. Oxycontin can sell on the street for up to $100 a pop. A RX for 30 days twice a day can net $6,000 a month. I’ve known providers to drug test patients they weren’t too sure about that they’d prescribed these kinds of drugs and some have come up negative on a tox screen because they weren’t actually taking it at all, they were selling it.

I remember one patient I’d received a call from a CVS pharmacist on once, just a couple of days after my doc had given him a 30-day RX for Oxycontin. The man had been getting the same RX from 4 different docs and filling all the scripts at various CVS pharmacies through MD, VA, and DC. The dude was cleaning up until he got busted, and he’d been coming to us for nearly a year. My doc could have been knocked over with a feather when he found out that this guy was a fraud.

True pain suffers really are the ones most harmed by abusing seekers and often it’s a big dilemma for the docs. Sometimes it just comes down to a contest between the best bull shitter and a doc’s best judgment call. Docs that have been repeatedly taken in by experienced seekers are likely to be the most skeptical, and when their license to practice can be on the line you can’t really blame them for being cautious. At the same time it’s not right that innocent people should have to suffer god-awful pain because of it. So what do you do? Going with your gut is about all you can do.

It not just pain drugs either. I had this crazy patient once that use to come in every week and holler my name through the front window asking, “Hay you got any samples of Viagra back there?” The dude was kind of creepy and I couldn’t imagine that he could have as many opportunities to need as much Viagra as he was always wanting. He was a 30 something grungy kind of loud mouth guy. And as it turned out, he wasn’t taking it at all, but trading it to taxi drivers for rides around town.

Kudos to you for helping the LOL!

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 Post subject: Treating chronic pain
PostPosted: Sat Oct 29, 2011 8:49 am 
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MsDaisy wrote:
Oxycontin can sell on the street for up to $100 a pop.

:shock:

I'm rich! Richer than Santa Claus!! Richer than Soros! :-bd \:D/

OK, not richer than Soros. ?(


I can't even detect that oxycontin works. I took one at 8 a.m. and can't feel any difference hardly. I guess it must have some effect on some people if it goes for $100 a pop, huh?

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 Post subject: Treating chronic pain
PostPosted: Sat Oct 29, 2011 8:59 am 
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They, (being those that pay the $100) crunch up the extended release pills that are supposed to last for hours so they get one big blast of a high at a time.

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 Post subject: Treating chronic pain
PostPosted: Sat Oct 29, 2011 11:03 am 
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This may be a little too personal, but one of the major side effects of narcotic pain meds is constipation. Seek advice from your health care provider on which kind of stool softener Is best for you.

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