For those who live with pain

I take the following for pain: Neurontin, Ambien, oxycodone, marijuana, and Cymbalta (an SNRI—selective serotonin and norepinephrine reuptake inhibitor). These drugs are what’s left of the 25 or 30 I’ve used, a list that includes every legal narcotic I know of, a half dozen sleeping pills, various anti-inflammatories, and, for good measure, Elavil. Cymbalta (see photo) has helped most, but, due to insurance changes, my cost for my next prescription will be $607 for a 90-day supply. While looking online for substitutes, I learned that Effexor (another SNRI) is equally good for pain and, because it has been around since 1994, comes in a generic form for $12.32. 

The high cost of Cymbalta is why, if you live in America, you are barraged with Cymbalta commercials, whereas you never see Effexor advertised. Along with price, other disadvantages to the latest “miracle drugs” is that their long-term downsides are unknown and they are rarely more efficacious than older drugs. So, why did my doctor prescribe an expensive medication before trying me on a dirt-cheap drug that is likely to be just as effective? Hell if I know, although I’ve noticed that doctors don’t usually know how much drugs cost. They also used to get kickbacks from pharmaceutical companies, although my understanding is that the government put an end to this.

It’s good to remember that you’re probably in a better position than your doctor to know which drugs might help you. For instance, if you suffer from ongoing pain, your medication options are limited, and with a little effort, you can learn what they are and stay abreast of the latest research. Of the drugs I’ve tried for chronic pain, I would say that narcotics are both the most heralded and one of the least effective. I mention this because some of you have trouble getting narcotics, and, as a consequence, appear to hold them in higher regard than they deserve. The reason for their relative ineffectiveness is that you quickly build up a tolerance, so if your starting dose is 5-10 mgs, you might be taking six times that amount (and incurring six times the risks) after a few weeks and still not get as good a result as you had with your initial dose. It is for this reason that I try to limit my narcotic intake to twice a week, but even then the tolerance problem remains. 

No doctor ever told me to take more than 20 mgs of oxycodone or Dilaudid at a time. This used to leave me in the troubling situation of thinking that, my god, I’m taking this strong narcotic that people rob pharmacies at gunpoint for, and I’m still in terrible pain—my condition must be hopeless. When I increasingly turned to the Internet for drug information, I learned about narcotic tolerance, and realized that my doctors simply weren’t taking tolerance into account, so I started increasing my own dosage, but no matter how much I took, I soon needed more. (If you should ever consider increasing drug dosage without your doctor’s consent, bear in mind the following statement from the American Centers for Disease Control and Prevention: “In 2008, more than 36,000 people died from drug overdoses, and most of these deaths were caused by prescription drugs.”)

Rather than the prescribed strength being too weak, I’ve also seen it go the other way. For instance, if I had used that 100-microgram Fentanyl patch that one doctor gave me, I’m pretty sure I would be dead. After another doctor started me on a triple dose of Demerol, I could hardly get out my chair for three days. Such overkill (ha) is another reason that you should do you own research.

Because of my positive experience with Cymbalta, I’ve become very interested in anti-depressants for pain relief. Some of you might know that the old tricyclic antidepressants (Norpramin, Tofranil, and Elavil, to name a few) have long been given for pain. Then came the SSRIs (Prozac, Lexapro, and Zoloft are three that I’ve taken), which weren’t good for pain by themselves but were good in combination with a tricyclic. The next advance was the SNRIs (Cymbalta, Effexor, Pristiq), which are effective for the pain of arthritis, fibromyalgia, and neuropathy, along with depression, panic disorder, social phobia, and obsessive-compulsive disorder.

As you can imagine, any drug that can do all that can also kick your ass, as I discovered when I stopped taking Cymbalta cold turkey last November and felt utterly exhausted, experienced excessive scalp sweating, had symptoms approximating the early stages of a horrendous cold, and wanted to rage one minute and cry the next, symptoms that continued for nearly two months. Since I had stopped taking narcotics at the same time, I assumed I was suffering from narcotic withdrawal and so did my doctor. When I finally went online, it didn’t take me any time to become convinced that it wasn’t the narcotics, it was the Cymbalta. Why didn’t my doctor know this? Maybe he didn’t sleep well the night before, or maybe he was thinking about his last patient or the fight he had with his wife that morning. I have no idea, but I do know that one should never go to any doctor with the assumption that everything that can be done will be done, and that it will be done right. I’ve experienced situations in which so many mistakes were made by so many people in so short a time that I imagined myself trapped in a Monty Python skit.

I’ve gone into some detail about anti-depressants for pain control because Cymbalta has worked fairly well for me without severe side-effects or a tolerance problem. It’s important to remember that chronic pain causes anxiety and depression, problems that worsen the pain, and that anti-depressants have the advantage of treating these along with pain. The worse downside to Cymbalta—so far, anyway—is that, having been through drug withdrawal a few times by now, I worry more about drugs that cause withdrawal than I do about drugs that I can easily stop. Whenever I start to focus on such concerns, I remind myself that living with pain and depression pose their own serious health risks. For example, chronic pain makes a person more prone to accidents; depression impedes his immune system; and the two of them together make it impossible to get adequate sleep. I, like so many of you, can no longer imagine a drug-free life despite the fact that I anticipate dying earlier because of it.

I have found living with pain—and the resultant disability—to be a major challenge to my desire to live at all. Many people experience this, and because of it, I have a great deal of sympathy for other sufferers. We share a problem that can be very hard to treat and that many people dont understand (especially if you “look normal”) and often seem bored by. I do understand what pain sufferers are going through, at least somewhat, and I am far from bored by it. Just as some of you worry about me, so do I worry about you. I am hardly the worst-off of those in my blogging community, and I can thank many of you for helping me keep my head above water.


PhilipH said...

Snowy, I doubt that I would be able to carry on with such chronic pain as experienced by you. I think I'd stick a dozen of those 'pain patches' on my chest and a few temazepan type pills and just back out of such a painful existence.
Many would say that it's a cowards way out but so what? A dead hero and a dead coward all end up in the same place, do they not?
This is why I am a strong supporter of 'assisted suicide' and think it's a basic human right NOT to suffer continuous pain, either physical or mental.
When Kenneth Williams (my favourite comic actor and raconteur) killed himself he left a simple message: "What's the bloody point!". I was shocked when I read of his death, but I fully understood his action.
There's a lot of brouhaha about our 'human rights' - something of a big problem with many Brits because we are bludgeoned by the Brussels beaurocrats to comply with THEIR interpretation of our 'rights' and yet they give nobody an easy way out of human pain and misery that is painless and swift.
Hope you continue recounting your life experiences as you are highly adept and learned with your blog.

Deb said...

Wow. I must have nodded my head a million times reading this, Snow. You are SO right --- you know, narcotics never worked for my pain very well, it made me sleep - and that was it. But the dosage when up'd --- yes of course, but that's when the dangers of overdosing is at risk. We had a friend of ours overdose on prescription pain relievers because she suffered so badly with back pain. They said it was "suicide" but it couldn't have been because she had JUST gotten her hair and nails done and made all these plans for the following week. I just couldn't accept suicide for an answer.

Anyway, I am a chronic pain sufferer myself. I have RA that was detected a while ago that I never bothered getting treated for. I have Dysmenorrhea which many people underestimate or downgrade because it's just a "woman's thing" ---- but usually, I'm hunched up in a corner either passing out or vomiting from the pain itself. It's one of the reasons why I couldn't hold a typical 9-5 job without calling in sick once a month. I even passed out at my desk where the ambulance had to shuffle me out on a gurney. How fecking embarrassing to say the least.

Since childhood, I have taken over 800mg of ibuprofen for my pain along with shots of brandy to complete the relief. Sometimes, it didn't even work at all. You are absolutely 110% correct when you said that chronic pain can lead to anxiety and depression ---- depression more so for me and anxiety when I anticipate a rough night.

Thank you for being so compassionate in this post. I'm sorry for all you go through and all the bullshit that comes with pain, doctors, scripts and so on. No one will truly understand the meaning of how hard it is to live with chronic pain unless they have experienced it. And that's a fact. Without experience, it gets downgraded to "aches & pains".

I hate it. Feel better!! And thank you for writing this post. I needed this today.

All Consuming said...

"Why didn’t my doctor know this?" - tha man was an incompetant buffoon. Twas the first thing said to me about them and has been repeated again and again on repeat prescriptions tsk. The cold turkey coming down off them is very bad indeed. It's similar with steroids too, and can be very dangerous. "I can thank many of you for helping me keep my head above water" - And thank you too sweetie, your a gem of a find for me on the web and have lightened my life without doubt. (Despite being a grumpy druggie. *smiles) xxx

Snowbrush said...

"I doubt that I would be able to carry on with such chronic pain as experienced by you."

Anti-depressants help as does having other people to live for. I would include my blog friends as "people to live for" because just as the intentional death of one of you would discourage me, so do I assume that my death would discourage you. I would also point out that I've grown accustomed to living as I do, so I don't usually rage against it to the extent that I once did. As with most problems, it's not the problem itself, but how I feel about it. Another thing I should point out is that I have improved far beyond how I once was, so I can now do most of the things I want to do as long as I take it easy doing them. A lot of people who kill themselves might not do so if they had given themselves more time to adjust to their situation.

"Many would say that it's a cowards way out but so what?"

I primarily blame religion for those instances in which people are reduced to having to blow their brains out, drink drain cleaner, lie in front of a train, die with their heads inside a puke-filled plastic bag, etc., in order to escape a life that they can no longer bear. I believe that all adults should have access to the means to take their lives quietly, peaceably, and with dignity, as well as help in doing so where necessary. Here in my own U.S. state (Oregon) suicide is legal for the terminally ill, at least, but they can't wait until they need help downing a prescribed overdose of barbiturates. Obviously, this puts a lot of people in the position of having to die before they want to for fear that they will wait too long and be trapped within their bodies.

"narcotics never worked for my pain very well, it made me sleep"

I wish. Once my brain says, "Hot damn but this high feels good," I can forget about sleeping.

"I couldn't hold a typical 9-5 job"

I look with nostalgia at those years when I could do "normal" work and carry on a "normal" social and recreational life. I stayed in bed ten hours last night, but still had to take a three hour nap because I've been in so much pain this week that I can hardly sleep. People often don't understand how pain affects every aspect of one's life.

"anxiety when I anticipate a rough night."

Yes, it's sad when a person becomes fearful of going to bed.

Sonia Rodriguez said...

Cymbalta helped me also but because of the high cost even with health insurance the cost went up and Im not working so I had to consider the cost each month on one income. And I had the same withdrawals as you went I did go off of it. I go to a pain specialist for the fibro first week of March. I can not have any narcotic because it makes the fibro pain worse as it wears off. Right now Im on Tramadol for pain. Lexapro, zoloft, xanax for emotional downs like crying for no reason. Its been a awful transition this last month. The fibro pain does make you depressed because the pain travels and you cant plan anything because you do not know how you will feel one day to the next. Ive had to do my own research for meds also. But I do miss the cymbalta just cant afford it. Love ya Snow xoxoxo

Snowbrush said...

""Why didn’t my doctor know this?" - tha man was an incompetant buffoon."

Yes, but he's MY incompetent buffoon. Actually, he was a doctor who was filling in for my regular internist that day, and I liked him overall (professionally speaking) and, if I didn't already have an internist I liked, I would probably go to him. A great many people think that, once a doctor screws up, it's time to find another doctor, but if I did that, I would never see the same doctor for very long. I think that a big difference between a lot of people and myself is that I am more likely to catch screw-ups and oversights because I do so much research both before I go to the doctor and when I get home. I take it that you are in the same boat, having narrowly escaped death at the hands of your caregivers on a few occasions now.

"...your a gem of a find for me on the web and have lightened my life without doubt. (Despite being a grumpy druggie."

Grumpy, perhaps, but not grungy, at least, as I do shower almost everyday.

Snowbrush said...

"I do miss the cymbalta just cant afford it."

Do you think you'll try Effexor?

"Tramadol." I couldn't tolerate that one for some reason.

"Lexapro, zoloft, xanax for emotional downs like crying for no reason."

You're not taking Lexapro and Zoloft at the same time are you? I've never heard of combining SSRIs.

Lisa said...

Hey Snow,
A blog post that resonates with me.
Drugs, I call them for what they are and I have tried so many in the pursuit of relief from physical and emotional pain.
I currently take a tricyclic called ( here is Australia) Deptran. It is a very old drug and i take almost maximum dose every night to assist with depression and anxiety. It knocks the beans out of me but it is the only drug out of the multitude i have tried that 'works' for me. I still have sad days but am no longer depressed. I have psychological therapy as well as pharmacological therapy. I use Lithium for mood balance but because of toxicity I am at the minimum dosage.
I also have a chronic pain situation so pain relief is required at times- I use a mixture of paracetamol and codeine but only at night when the pain seems the worst.
Lithium and Deptran are old drugs and therefore cheaper than many other drugs around these days.
The combination of lithium and Deptran causes issues with the thyroid gland so i am on meds for that as well. I keep a couple of Valium on hand just in case I cant control an anxiety attack.
So, yeah, colour me complicated but at least or at the most I am now regraded from 'treatment resistant depression' to 'treatable depression'.
The worst experience ? Zyprexa. A drug I was put on back in 2004 for three days which damaged the nerves in my face resulting in facial tics, muscle spasms and speech slurring. Not all at once I might add but it is getting worse as I get older and has a rapid decline as i get tireder. Catch me at breakfast and I will most probably talk your ear off but by afternoon tea I am monosyllabic by the nerve pain in my face. Valium helps that too.
Effexor ? Devil be thy name. I was on it for two years and that was okay- not perfect but okay but coming off it was a nightmare I would never hope to repeat. It was insanity and i know now that I should have been hospitalized for the duration of it. It was that bad.
So anyway, here i sit, medicated but functioning, unable to work, always tired and sore and (seemingly) complaining.
I do the most I can with the tools at hand and I live in hope that one day I may be drug free. The realist in me shakes her head but who knows ?
Maybe. xxx

Sissy said...

When my "Rich Uncle" dies I'm going to get myself a Biomat. I am at the end of my rope with doctors and their meds that don't help but make matters worse. The only period I've actually been without pain for 40 years is doing a good toxin cleanse or when I was using a good nutritional product/s. Money soon ran out with that little experiment though. I'm to the point that death would be a welcome release. Often wonder "what's the point". Even alternative healing methods are out of my reach now and they did work wonders - for me; so my next goal is some infra red treatment. Rush it up, dear uncle is all I gotta say. :)

CreekHiker / HollysFolly said...

The pain I have terrifies me... but the addictions I've seen my relatives go through keep me from trying drugs. I've been lucky in that exercise and stretching helps...but I fear it won't for the long term.

Stephen Hayes said...

My diabetes doctor put me on insulin and gave me samples that worked wonderfully at bringing down my blood sugar, but when I tried to fill the prescription the cost was six hundred dollars for a month supply, and my insurance wouldn't pay for it. This doctor had no idea what this stuff cost.

The Elephant's Child said...

Chronic ongoing pain? Oh yes. To date, nothing has really done more than take the edge of it. When I can I swim - and that does as much as any of the medications I have been prescribed. Sadly, it also increases my fatigue to almost intolerable levels. Swings and roundabouts. And there are far too many of us in the same (or very similar) boats. Sucky, sucky, sucky.

Myrna R. said...

I don't suffer from chronic pain, except some mild arthritis. Whenever I do have pain, I think of you. I hope you continue to cope by writing, searching and being your best pharmacologist. I hope thoughts have power because I send my best thoughts for your wellbeing.

Charles Gramlich said...

I tend to respond very strongly to morphine type drugs and less so to other types. But apparently it takes quite a bit to knock out my pain when I need it.

KC said...

Hello Snow,
It is a very cold and snowy day in Salt Lake today. To keep busy I checked my very neglected blog and noticed that you posted a comment back in October! So sorry I didn't respond. I lost interest in my blog but still read yours and others.
In response to this post have you tried Canada Pharmacy? I got a prescription that to my disbelief was $479.00 at our local Costco. A friend's suggestion led me to send my script to the Canadian pharmacy and it was $74.00 including shipping. The down side is that it took a couple of weeks to get it so it wouldn't do if you needed something right away but is good for refills that you anticipate needing in advance. The web address is:
The winter here in Utah has been especially difficult this year. To add to that we lost our Ruby after 14 and1/2 years in January. What a heartbreak.

Snowbrush said...

"The only period I've actually been without pain for 40 years is doing a good toxin cleanse or when I was using a good nutritional product/s. Money soon ran out with that little experiment though."

Does it really need to be so expensive? For a few years, I fasted one 24-hour day a week and lived almost entirely on a diet of blended juices (smoothies, some people call them), and I felt pretty good, so I sometimes wonder why I don't go back to that. If you should want a cheaper alternative to what you were doing, why not try that route? It's cheap, requires no cooking, doesn't mess up a lot of dishes, and you can get an impressive variety of foods that way. I used to put fruits, veggies, grains, nuts, and seaweeds, into the blender, and drink the whole 42 ounce container three times a day.

"i take almost maximum dose every night to assist with depression and anxiety. It the only drug out of the multitude i have tried that 'works' for me."

Have you tried the SNRIs (Effexor and Cymbalta)? Some people who haven't had much luck with the SSRIs do well on it, which is why I mention it. The tricyclics are certainly tried and true, but do seem to come with more annoying side-effects, although I don't know that they're anymore dangerous.

"Effexor ? Devil be thy name. I was on it for two years and that was okay- not perfect but okay but coming off it was a nightmare I would never hope to repeat. It was insanity and i know now that I should have been hospitalized for the duration of it. It was that bad."

Yep, you've tried Effexor. Going nutso seems to be a common SNRI withdrawal symptom. On the one hand, doctors pooh-pooh the idea that the SSSRIs and SNRIs can be difficult to stop, but then you have newsgroups that are overrun with people who write as you do. I've gone through withdrawal with three drugs: Zoloft, Klonopin, and Cymbalta, and it was indeed a trial by fire every time. Of course, I stopped them all cold turkey, which is exactly what you're not supposed to do. Is that what you did? I hate to think it would have been that bad if you had cut back slowly.

"In response to this post have you tried Canada Pharmacy?"

Not yet, but I have done some pricing through them and others. Our next big drug dilemma is Peggy's migraine medicine, which now costs $20 a pill for weekly migraines that sometimes require two or three pills. I can order them cheaper (though they're still expensive) from Canada, but if I can get a generic form of a related drug here, it would be even cheaper, so I'll probably try that first and see how she does with it. So far, the US feds have been content with seizing and returning a small proportion of Canadian drugs (which are simply repackaged and resent), but are now talking about destroying them all, so I don't see Canada as a preferred option due to never being able to know if my drugs are going to arrive.

Snowbrush said...

"I send my best thoughts for your wellbeing."

I like that, thank you. Thoughts, not prayers. I can hear that and not feel conflicted.

"I live in hope that one day I may be drug free. The realist in me shakes her head but who knows ?"

I suppose most of can relate to having once been afraid to take so much as an aspirin for a headache, and now we take one dangerous pill after another.

"I tend to respond very strongly to morphine type drugs and less so to other types. But apparently it takes quite a bit to knock out my pain when I need it."

You can usually feel the pain even with narcotics, but they do ease it somewhat and also make you so that you're aware of it, but don't seem to care about it so much. It's as if the pain is still there, but seems almost external to you.

"The pain I have terrifies me... but the addictions I've seen my relatives go through keep me from trying drugs."

I've been plenty scared myself, night after night spent sitting in a chair petrified that the pain might get even worse. A drug like Effexor might very well help you more than the kinds of drugs that people abuse. I've read that even it can be abused, but damned if I know how because there's no high to it. It can be hard to stop, but it's not like you're longing for it, and having to slap your hand away from the medicine bottle. Why not try it? It comes in a generic.

Snowbrush said...

P.S. I heard on the news last night about a new breast cancer drug that will prolong life for about six months but at a cost of $100,000. I think that America is moving more and more in the direction of being a society in which rich people can get really good medical care while the poor and middle class will be left to suffer and die. This is, as I understand it, the Republican vision for our country. They talk of medical care as if it were the moral equivalent of a luxury car, something that you can either afford or you can't, and if you can't, tough shit.

lotta joy said...

Cymbalta is highly advertised because doctors follow their patients. If enough patients show up in their office requesting a particular drug, the next time the drug representative is there, the doctor will ask for free samples. Free pens and mouse pads follow. Maybe a free trip thrown into the bargain. Yet you say they have stopped that practice? I wish.

All the drugs advertised on television are always followed with the fast talking small print: "if this drug doesn't kill you, it just might help".

Effexor caused too many side effects for me to even bother taking a third pill. I was SO disappointed.

My beloved Indiana surgeon always sent me home with lots and lots of Percocet. Fearing the build-up of tolerance, I still had most of them when we moved, and I came to Florida with enough pain meds to set up my own clinic.

Which is a good thing, because the Indian/Hindu doctors here, refuse to prescribe anything for pain other than Tylenol.

I've got some extremely painful surgery happening in April, and I'm definitely glad I still have my SIX YEAR OLD bottles of Percocet.

Snowbrush said...

"the doctor will ask for free samples."

I would assume that drug reps are eager to provide as many free samples as a doctor will accept. As for actual gifts (meals, vacations, money), the Department of Health and Human Services complained loudly, but maybe it stopped short of actually doing anything. I just remember the stink that it (and consumer groups) raised, which was followed by silence, suggesting that had steps had been taken.

"the Indian/Hindu doctors here, refuse to prescribe anything for pain other than Tylenol."

Florida is so desperate that it's bringing in doctors from overseas? Maybe the foreign doctors are even more afraid of the Drug Enforcement Administration than are the native doctors. Maybe there's also a religious or cultural bias. I do believe that the more religious a doctor is, the less likely he will be to prescribe pain meds, at least in adequate strengths, due to the religious view that suffering is redemptive. Since the South is more religious than other parts of the country, this would hold true there more than it would here in heathen Oregon. Nurse Peggy did seem to find that to be true.

Linda said...

All this is why I refuse to take the pain meds offered me. I have a cabinet full of pain meds that I refuse to take. I take an aspirin about once a month.

Other than that, I take premarin, levothyroxin. I have valium that I take about three days each month. I am too afraid of it to risk more. Melatonin seems to release me from pain as I go to sleep.

So, I hurt!

Phoenix said...

I am very, very lucky that I live a physically pain free life, although I have a little PTSD from my childhood that can be triggered occasionally, and that's no fun. But on a day to day basis, for the most part, I have my good health, and I try to never take that for granted.

I recently had minor surgery that required a strong dose of Ibuprofen as the painkiller of choice, and of course I couldn't take it before the surgery because I hadn't eaten breakfast. So there I was, howling in pain at the doctor's office, and went home and lay in bed and felt sorry for myself - until I realized that this was one moment in my life, and that the next day I'd be in much less pain, and some people live with pain every single day. My thoughts are with you and every one else who's in pain. I wish I could do something to alleviate it, but I can't. So I'll just say: I care about you and hope you're doing well. And I miss you too.

kylie said...

i have been lucky enough to not have a lot of physical pain in my life. I've had a number of serious knee injuries when function was more an issue than comfort and a couple of (to my mind) seriously painful and debilitating lower back injuries. The difficulties i suffered with those opened my eyes just a little to just how pervasive pain can be and they also convinced me that anyone who is somehow morally superior to using pain meds doesnt really know what pain is.
i'm so sorry you have to limp through life, rather than skipping but i appreciate that you keep going, showing us all just what can be achieved.

for your readers with dysmennorea and fibromyalgia, i apologise if i insult you with useless advice but both of those problems have been known to be cured under chiropractic treatment.